Bi Polar Christmas.
The holidays are certainly hectic, but there is time for quiet reflection. Through the melee of shopping for gifts, or the opening of parcels there are continual flashbacks of past times.
As each season passes, we see the growth of our children. Every Christmas we add 2 more notches to the old barn post at the end of our kitchen and our experiences and recollections of Christmases pasts provide a festive milestone for their development and give us hope for the future.
Three Christmases ago, we were all sleep deprived, as our son would have struggled to be calm from Halloween ‘till New Years Day. Any change in his life would keep him up at night. We invested hours of planning, verbal preparation, picture schedules, and social stories to help him cope, in the hope that we would all get some sleep. Most children get excited around this time of year, but for a child with Autism needing the stability of a predictable routine each day, the holidays unfold into a nightmare of change and unpredictability.
Transition trauma.
After starting school in April, and a summer of Extended School Year, our 3-year-old son relied upon the regularity of a school day. Following a consistent routine would help him sleep, and we would see less teeth grinding, mouthing, and a decrease in his frustration levels meant less tantrums and screaming fits. Our family would dread long weekends and school holidays, as we knew he would become unbalanced, and literally fear sleep. In September of that year he completed a successful transition into a new classroom, with prior visits to take pictures of the classroom and meet hi new teachers, we were confident that we had done all we could to help him adjust. But the holidays are full of surprises, and he literally froze at the door of his newly ‘spookified” classroom. From there on we could read his sleep diary and see that any unexpected change be it seasonal decorations, fire drills, or 4 days out of school, would be enough to keep him awake for weeks. Now, our son is 6 and his sister is 5, and like many families with ‘typical’ children, we plan for the new school year by counting the ‘home’ days, and minimizing the impact of the return to school.
They both love ‘home’ days, but once back at school seeing their friends, they’ll love that too. We still rely on social stories and continual verbal reminders to help us all get through the days and nights, but in 3 years, the change is miraculous.
Extreme Gimmies.
Our son like many kids with Autism Spectrum Disorder (ASD), the pursuit of his “objects of desire” or obsessions are at times, extremely intense. Both our children sometimes display the shopping isle meltdowns, but we have a plan, which involves maintaining a wish list. Each child has a wipe-able pad on the fridge, items are written up, and requests are relayed to friends, family, and even Santa! Our reply to unreasonable demands is “Is it on your wish-list?” We know it’s not a long-term solution, and when they’re are older we’ll need some sort of reward chart for earnings and deficits toward their allowances, but for now the wish list works, and ‘toy-isle-tantrums’ are avoided.
Food barometer.
Mealtimes with folk on the spectrum can be tricky at the best of times, and “special meals” are viewed with absolute suspicion. The holidays are traditionally times when friends and family gather around the table, and enjoy home cooking with special recipes handed down through generations. “I don’t like fancy food,” said our son as we laid the table with red and green placemats this Christmas. Over the years, we have had many issues with food, and like many ASD kids, our son hated to try new food, and would become nauseous if exposed to foods with certain textures or smells. We had planned a ‘slightly festive’ meal; as we have learned from previous at-the-table experiences that we need to take small steps toward a ‘typical’ Christmas feast, but we are determined to ‘de-sensitize’ our whole family in order to allow us all the experience the traditions together.
We pulled crackers, told jokes while wearing paper hats, and our son amazed us by just by asking for many second helpings of the roast lamb, but refused to eat the brussel sprouts.
Yep, ‘typical’ feels good.
HAPPY NEW YEAR TO ALL!
Sunday, December 30, 2007
Thursday, August 30, 2007
Update to New Hampshire Leadership
My Name is Liz Macdonald, and I am a ’05 Leadership graduate.
This is my first update since graduating from the Leadership training, and truthfully, I thought I did not have much to share. Not that leadership did not give me the tools I needed to “go out and make a difference” for it surely did. I just thought my life was not worthy of note. ‘I’ll write when I’ve done something’ I said to my self each time I received the prompt email from devoted Beth Dixon.
This year is different, and in comparison to most of the updates I have been reading, especially Laurie Mc Cray ( wow!) – my contributions are not on the same scale, Yet since 2005 I have accomplished many things – and so has my son.
John will begin 1st grade next week, and in the midst of new construction at his school, I met with the new principal sharing with him my vision for my son, the school and our community. I also uncovered his “self interest” and established the beginning of what I hope will be a fruitful relationship.(I wouldn’t have done that before Leadership!)
Leadership introduced me to post graduate learning. Now I ‘need’ to keep learning and have attended several conferences, workshops, and last year I studied at Antioch New England, completing the Autism Spectrum Disorder Certificate Program. It was a brilliant opportunity to work with such high-liners in the field as Stephen Shore, Larry Welkowitz and Teresa Bolick. I met many people dedicated to the education of those on the spectrum, and was able to apply everything I have learned to my own situation, with many positive results.
This is my first update since graduating from the Leadership training, and truthfully, I thought I did not have much to share. Not that leadership did not give me the tools I needed to “go out and make a difference” for it surely did. I just thought my life was not worthy of note. ‘I’ll write when I’ve done something’ I said to my self each time I received the prompt email from devoted Beth Dixon.
This year is different, and in comparison to most of the updates I have been reading, especially Laurie Mc Cray ( wow!) – my contributions are not on the same scale, Yet since 2005 I have accomplished many things – and so has my son.
John will begin 1st grade next week, and in the midst of new construction at his school, I met with the new principal sharing with him my vision for my son, the school and our community. I also uncovered his “self interest” and established the beginning of what I hope will be a fruitful relationship.(I wouldn’t have done that before Leadership!)
Leadership introduced me to post graduate learning. Now I ‘need’ to keep learning and have attended several conferences, workshops, and last year I studied at Antioch New England, completing the Autism Spectrum Disorder Certificate Program. It was a brilliant opportunity to work with such high-liners in the field as Stephen Shore, Larry Welkowitz and Teresa Bolick. I met many people dedicated to the education of those on the spectrum, and was able to apply everything I have learned to my own situation, with many positive results.
Earlier in 2006 I gathered members from school and community to form a playgroup here in Hinsdale. My motivation was to be a local version of ‘Child-Find’, to help us identify children that may be at risk for developmental delay. The play dates continue to be successful and parents report smoother transitions into school for their youngsters who regularly attend and tell us they have made lasting friendships with folks they met at one of the play session. Our efforts were recognized by the Family Support Council (Affiliated with our area agency- Monadnock Developmental Services) who presented the playgroup with a check$ last spring to help sustain the group. The playgroup is also supported by the Hinsdale Prevention Coalition, who are invested in prevention of drug abuse along with Family Strength. We also team-up with New Hampshire Healthy Kids, and Cheshire Smiles who use the playgroup setting to educate children and their parents.
In retrospect, I realize that my family has moved from isolation to involvement through collaboration. And Leadership bought about this change.
Back in Feb. 06 The Collaboration for Autism initiative from New Hampshire Connections gained momentum here in the Monadnock region, and in June 07 a group of us completed the first stage of ‘Camp Inclusion’. Representatives from MDS, Antioch, New Hampshire Connections, and the Family support council, Monadnock Family services and more coordinated a full days training for over 50 local and regional camp directors and personnel. We are delighted at the success of the training that featured Cathy Apfel and surrounded the issue of how to increase the opportunities for AS kids in a multitude of recreation environments.
Recently, The Parent Information Center provided me with the training needed to become a surrogate Parent, and as I wait to be of service, I have become a parent advocate for families who need support to navigate the world of special education. My second advocate IEP meeting is next week, and I hope to be of service to more families as we head into the school year.
As the summer ends we the Macdonalds ‘brace ourselves’ for the transition back to school, we plan our next action,,,, which is to apply for citizenship and then to vote!
Thank You Leadership for making me more accountable.
Best to all, Liz Macdonald
Thursday, May 24, 2007
parents supporting parents
In response to -:
Observation of a Parent Support Group Antioch University New England
Advocacy Applications for Working with Individuals on the Autism Spectrum
5/14/2007
Elizabeth Macodnald May 18, 2007.
Everything we do as parents and educators has a tremendous impact on outcomes for our children. Educators and families are fortunate to have the resources to give their utmost to the children in their care, and should give thought to the sustainability of those resources. It seems all too common that the parent, predominately mothers have "put everything on hold" while they ‘fight’ for their child. As a parent with a child who has Autism, I know there is little choice in how we spend our time. No other parent however invested will do for our children what we do, and no teacher however dedicated is held accountable in the way that I hold myself responsible for the well being of my child.
The parents in the support group you experienced are undoubtedly relentless in their pursuit of the best education for their children, but they as individuals themselves may be in a holding pattern, waiting to return to the person they used to be before the diagnosis, before the challenges of behaviors, before the stakes became so high. In these circumstances families may be vulnerable; relationships may be under pressure and children might feel that they are at the center of the stress and anxiety. The support group is hopefully part of a larger wrap-around network of family, friends, educational and other professionals coming together for the good of everyone, but especially for the good of the child. It saddened me to hear that the group was not well attended, and I hope that the two are not discouraged and continue to find support from one another at the very least.
Observation of a Parent Support Group Antioch University New England
Advocacy Applications for Working with Individuals on the Autism Spectrum
5/14/2007
Elizabeth Macodnald May 18, 2007.
Everything we do as parents and educators has a tremendous impact on outcomes for our children. Educators and families are fortunate to have the resources to give their utmost to the children in their care, and should give thought to the sustainability of those resources. It seems all too common that the parent, predominately mothers have "put everything on hold" while they ‘fight’ for their child. As a parent with a child who has Autism, I know there is little choice in how we spend our time. No other parent however invested will do for our children what we do, and no teacher however dedicated is held accountable in the way that I hold myself responsible for the well being of my child.
The parents in the support group you experienced are undoubtedly relentless in their pursuit of the best education for their children, but they as individuals themselves may be in a holding pattern, waiting to return to the person they used to be before the diagnosis, before the challenges of behaviors, before the stakes became so high. In these circumstances families may be vulnerable; relationships may be under pressure and children might feel that they are at the center of the stress and anxiety. The support group is hopefully part of a larger wrap-around network of family, friends, educational and other professionals coming together for the good of everyone, but especially for the good of the child. It saddened me to hear that the group was not well attended, and I hope that the two are not discouraged and continue to find support from one another at the very least.
Thursday, May 10, 2007
Why Lable?
The week started with an article in New Scientist Tech “When sociable computing meets autism”
The researchers were interested by a film created by Amanda Baggs’s “In My Language”.
While reading the article, I began to feel uncomfortable. If scientists could invent a “mind reading tool” to help individuals with Autism to understand emotions, “then everyone will know what I’m thinking!” I said it aloud, Homer Simpson-style.
Luckily, I can’t stay on one topic for long, so I visited Antioch First Class to see what’s up for next weekend. Amanda Baggs is one of the people we can research for a brainstorm session during our first class with Stephen Shaw. I am delighted as the first time I ‘met’ Amanda she was a major contributor to autistics.org The real voice of Autism one of the many websites added to ‘my favorites’ when we first realized our child was on the Autism spectrum. The site was refreshing but sometimes shocking suggesting that other Autism websites and organizations we built by neuro-typical people who were ignorant of Autism and that their assumptions were insulting to those on the spectrum. It was the first site to make me think about how we as a family perceive Autism and how we frame it at home, in school and in our community. We thought we needed to make a positive introduction of Autism to our then 2 and ½ -year-old son who was diagnosed with Pervasive Developmental Disorder Non Otherwise Specified (PDD NOS), but we were not sure how. Did he need to know? When should we tell him? What should we say?
I had read books by Luke Jackson a young author with Asperger’s Syndrome from the UK. Luke compels parents to tell their children what “the thing” is as soon as they can. Others in the fields of therapy and research working with children on the spectrum, describe seeing a huge weight removed once they understand that the difficulties and differences that they experience have a name, and that there are other people like them.
Amanda defers to Jane Meyerding for her explanation of “why label?”. Jane describes her acceptance of the Asperger’s label “If I could understand my life for the first time only by understanding how my brain was different from the majority of brains, how much did I really have in common with all those neuro-typicals (NTs) out there, compared to whom I'd been judged inadequate so many times.”
As our family navigated our son’s early intervention process, we accepted the labels as signposts. The signposts told us which way to go. Rather than categorizing, or stereotyping behaviors and personality, the explanations of our son’s Autism also helped his sister, his peers, our friends and extended family. All of who now have experience of one person’s Autism to include in their understanding of the diagnosis. We chose to tell our son (and our daughter) about how we understood his Autism, and how others may understand it too. As our son grows, we hope he will find the explanations, labels and signposts helpful. We hope he will not be limited or undermined by the diagnosis and others perception of his ‘disorder’ Each day our soon-to-be six- year-old son shares more of his Autism with us, and as we build a better understanding, we make the least dangerous assumptions possible.
In her video Amanda states, “This is not a freak show.” And raising awareness and creating positive perceptions and changing society’s negative viewpoint can be a painful and slow process, so we take time to introduce people to Autism and we ‘show off’ our son as proud parents do. And every day he reminds us that he is truly an individual with Autism, and not “an Autistic’.
Research links-:
http://www.newscientisttech.com/article/mg19325917.100-when-sociable-computing-meets-autism.html Accessed 2.19.2007
http://www.youtube.com/results?search_query=Amanda+Baggs&search=Search Accessed 2.24.2007
http://amanda.autistics.org/ Accessed 2.19.2007
http://www.autistics.org/ Accessed 2.19. 2007
http://www.inlv.demon.nl/subm-brain.jane.eng.html Accessed 2.10.7007
http://www.jacquijackson.com/books/freaksgeeks.html Accessed 2.20.2007
The researchers were interested by a film created by Amanda Baggs’s “In My Language”.
While reading the article, I began to feel uncomfortable. If scientists could invent a “mind reading tool” to help individuals with Autism to understand emotions, “then everyone will know what I’m thinking!” I said it aloud, Homer Simpson-style.
Luckily, I can’t stay on one topic for long, so I visited Antioch First Class to see what’s up for next weekend. Amanda Baggs is one of the people we can research for a brainstorm session during our first class with Stephen Shaw. I am delighted as the first time I ‘met’ Amanda she was a major contributor to autistics.org The real voice of Autism one of the many websites added to ‘my favorites’ when we first realized our child was on the Autism spectrum. The site was refreshing but sometimes shocking suggesting that other Autism websites and organizations we built by neuro-typical people who were ignorant of Autism and that their assumptions were insulting to those on the spectrum. It was the first site to make me think about how we as a family perceive Autism and how we frame it at home, in school and in our community. We thought we needed to make a positive introduction of Autism to our then 2 and ½ -year-old son who was diagnosed with Pervasive Developmental Disorder Non Otherwise Specified (PDD NOS), but we were not sure how. Did he need to know? When should we tell him? What should we say?
I had read books by Luke Jackson a young author with Asperger’s Syndrome from the UK. Luke compels parents to tell their children what “the thing” is as soon as they can. Others in the fields of therapy and research working with children on the spectrum, describe seeing a huge weight removed once they understand that the difficulties and differences that they experience have a name, and that there are other people like them.
Amanda defers to Jane Meyerding for her explanation of “why label?”. Jane describes her acceptance of the Asperger’s label “If I could understand my life for the first time only by understanding how my brain was different from the majority of brains, how much did I really have in common with all those neuro-typicals (NTs) out there, compared to whom I'd been judged inadequate so many times.”
As our family navigated our son’s early intervention process, we accepted the labels as signposts. The signposts told us which way to go. Rather than categorizing, or stereotyping behaviors and personality, the explanations of our son’s Autism also helped his sister, his peers, our friends and extended family. All of who now have experience of one person’s Autism to include in their understanding of the diagnosis. We chose to tell our son (and our daughter) about how we understood his Autism, and how others may understand it too. As our son grows, we hope he will find the explanations, labels and signposts helpful. We hope he will not be limited or undermined by the diagnosis and others perception of his ‘disorder’ Each day our soon-to-be six- year-old son shares more of his Autism with us, and as we build a better understanding, we make the least dangerous assumptions possible.
In her video Amanda states, “This is not a freak show.” And raising awareness and creating positive perceptions and changing society’s negative viewpoint can be a painful and slow process, so we take time to introduce people to Autism and we ‘show off’ our son as proud parents do. And every day he reminds us that he is truly an individual with Autism, and not “an Autistic’.
Research links-:
http://www.newscientisttech.com/article/mg19325917.100-when-sociable-computing-meets-autism.html Accessed 2.19.2007
http://www.youtube.com/results?search_query=Amanda+Baggs&search=Search Accessed 2.24.2007
http://amanda.autistics.org/ Accessed 2.19.2007
http://www.autistics.org/ Accessed 2.19. 2007
http://www.inlv.demon.nl/subm-brain.jane.eng.html Accessed 2.10.7007
http://www.jacquijackson.com/books/freaksgeeks.html Accessed 2.20.2007
Perception is Everything
Autism on the air.
Building on last year's successful campaign, Autism Speaks and retailer TJ Maxx partnered again this April on a month-long fundraising and awareness program. From April 8 through April 28 at 800 TJ Maxx stores nationwide, customers were be invited to purchase an Autism Speaks puzzle piece at the checkout for a donation of $1, with all proceeds benefiting Autism Speaks. A store casting voice stated that every 20 minutes a family receives the ‘devastating’ news that their child has Autism.
4 years ago, we were one of those families. Our son’s development had halted, and then rapidly regressed. He was withdrawing from the world, and our family. For us, not knowing what was happening was devastating, followed by a mix of relief and grief on receiving the diagnosis. It was the beginning of our journey to understanding autism and our son’s autism. Early interventions enabled him to ever so slowly progress into an amazing young man with a passion that drives him to succeed, vastly different from our initial perception of someone with autism. As our children mature, our own knowledge of the varying perspectives and approaches to their education mature too. We document our journey and we have witnessed a transformation over the years, and we consider how our son would react to being told that he ‘devastated’ us.
Voices of Autism.
According to the Center for Disease Control the incidences of autism have increased to one in 150, and the numbers of people with autism finding their voice is on the rise too giving us plenty of opportunity to listen and understand. After all, how better to learn about autism than from an autistic. Adults, clinically or self-diagnosed with autism, have found many avenues to share their opinions. Stephen Shaw, and Phil Swartz both confirmed that most people with autism do not object to the term ‘autistic’. Indeed they may prefer “autistic”, to “person with autism”, explaining that they are unable to separate or distinguish themselves from their autism or in Phil’s case – Asperger’s. Through the discussion in class, I now appreciate that it is not the label, or language that is used to identify an individual that is contentious, rather, it is the assumptions that can accompany the labeling that can be infuriating to ‘autistics’ or ‘aspies’. Some autistics make huge efforts to re educate society on the positive aspects of their differences, and they point out that many of terms used in association with autism are disrespectful and insulting to those on the spectrum. In an essay titled Autism, Genius, and Greatness written by Frank Klein an adult with autism, he objects to the term “intervention” stating that is … “offensive to autistic people that do not hold that they are the result of something awful. Indeed, there is good that comes from autism, even though the distraught parents of newly-diagnosed autistic children may not be able to see it”. Some web sites of organizations claiming to be a “voice of Autism” host postings where the ‘A’ word is aligned to the ‘C’ of Cancer. The ‘search for a cure’ continues and as parents and families consider extreme measures such as ‘chelation’ to “ rid their child of autism” and many of them have plunged themselves into debt following the promise to ‘defeat autism now’. Others have a more fatalistic approach, and prescribe limited interventions and maximum respect and tolerance. Such sites like neurodiversity.com, and the Blogs of people like autism diva have some extreme reactions to society’s treatment of their population. I believe it’s easier for our family to promote acceptance and tolerance because our son seems on the surface to be better adapted that many on the spectrum. I would be wary of asking the same acceptance from a parent that struggles to engage their child who demonstrates severe self-injurious behaviors, a parent who is exhausted, barely coping with the daily challenges.
Disclosure for a child.
When asked when at what age a child should be told that they have autism Stephen said that he could not recall exactly when he was told. Autism was a familiar word in his home and one that he grew-up with. I was relieved to hear that Stephen supported early parent-to-child disclosure. Autism is a word my son, who has just turned 6, knows very well. We discuss autism as a possible explanation as to why he was so good at knowing his shapes when he was little, and why he could spin almost anything. We tell him what we think explains his autism and what other people think about it, in an attempt to expose him to the variances of society’s perception of autism, and the individuals who live with exceptional challenges everyday. Our daughter has who has ‘Princessism’ is younger, but emotionally her brother’s equal, She competes for attention, so we list the strengths that accompany the diagnosis. We hope that both children understand that their individual qualities are perceived, evaluated and attributed. We teach them self-determination.
By describing our own strengths and challenges we reinforce their understanding of us, while sending a message of acceptance. We see every moment as a teaching opportunity, giving examples like how most people do better when they know what to expect, or what’s expected of them.
Fighting the fear.
We review the studies that investigate such topics as complex brain function or heavy metal retention. We have learned to be sensitive to the facts, rather than the news grabbing headlines. Our son’s regression into autism might well have been caused by an array of separate or combined environmental triggers. Research into the cause of autism continues and it seems that each week findings shift from confirmation to denial. There is no doubt that our family’s heritage contributed to the genetic pre cursive or susceptibility in our son. I have 2 nephews diagnosed with ASD, and other members in both families have many of the exceptions associated with autism. Their strengths have served them well. The adults in our families live interdependently; some are over achievers, and many have some unusual characteristics that the English may describe as mere eccentricities. Our family grew up in a world where we did not purposely uncover our weaknesses or vulnerabilities; we could be ‘a little quirky’, but we had to overcome any challenges often without support. My nephews family have not disclosed their children’s disability. They tell the stigma attached with formalized diagnosis is too great, and may prevent their children from getting a job in the future. So far I have not found a way to advise that unless they have access to all the services that a formal diagnosis would yield, they may not gain the skills needed to maintain employment.
The fear of being different, standing out or being singled-out is understandable. In the book Perfect Targets, Rebekah Heinrichs explains why the bullying of asperser kids in almost inevitable; involving power balance issues, challenges with social interactions, emotional vulnerability, anxiousness, inability to easily adapt to change, and clumsiness add to the likelihood that children with AS will become targets for bullying. But these issues alone are not necessarily contusive to bullying. It takes two or more to bully. The reaction of others unaware or not accepting of autism or Asperger’s creates the setting for bullying.
Disclosed futures.
Society’s attitude toward autism may be changing for the better, but the progress is sensitive to setbacks. I refer to Virginia Tech incident where many were killed at the hands of a loaner reported to be autistic. Generally, people understand that exceptional people archive exceptional feats but any individual strengths can be outweighed by another’s poor perception of autism. Autistics may struggle to make a ‘sure thing’ judgment about disclosure. How can they effectively assess their peers, their boss, and their bank manager when their ‘veil’ obscures their perception? During the informal interview session with Andy – a member of the panel at Antioch, we discussed Internet and e-mail security. When Andy realized that his e-mail exchanges at work may be monitored he said, “ Then I may have already disclosed” He looked concerned, and unsettled. His work environment was not safe. He was not secure. He may have lost the choice to disclose or not.
For our son the teaching of self-determination and self-advocacy has already begun. We use modeling, and social narrative in our every-day-life family classroom. These subjects are a challenge to teach, and we know it may take him a while to learn when to disclose and to whom. Using tools like the self disclosure worksheet from Ask and Tell (Shore, Ruth Elaina Joyner Hane 2004. page 25) will certainly help. There are social goal on his IEP that involve building an understanding of what makes a goof friend, and which remarks are meant as a joke, and which are intended to be hurtful. Our son also needs to begin learning about disclosure, and we have to begin with respecting his individual choice. Stephen’s class made me realize that we should find means to advocate for our son, without disclosure. Up until now, we had ‘used’ his autism to promote awareness, but we can no longer make that choice for him.. Today I asked him if he wanted people to know about “His Autism” I asked if he wanted me to tell people, or if he wanted to choose. He said that other people autism was better than his, that he’s six, maybe when he was 7/8/9, maybe. His words drifted off, and I could tell he was really considering it, but that he also wanted to get home to play. I said that we could talk about it again some time.
References -:
Autism Speaks TJ Maxx, In-store Fundraising CampaignApril 8 - April 28
Center for Disease Control
Frank Klein, 2001 Autism, Genius, and Greatness http://home.att.net/~ascaris1/index.html accessed May 5, 2007 12.48 am
Parent Information Center’s ( PIC)
Rebeka Heinrichs, Perfect Targets review Jan 2003 http://www.socialworktoday.com/archive/swnov2006p18.shtml
accessed 5/8/07 10:15 pm
Shore,S. Ask and Tell: (2004) Self-Advocacy and Disclosure of people on the Autism Spectrum Autism Asperger’s Publishing Co
Building on last year's successful campaign, Autism Speaks and retailer TJ Maxx partnered again this April on a month-long fundraising and awareness program. From April 8 through April 28 at 800 TJ Maxx stores nationwide, customers were be invited to purchase an Autism Speaks puzzle piece at the checkout for a donation of $1, with all proceeds benefiting Autism Speaks. A store casting voice stated that every 20 minutes a family receives the ‘devastating’ news that their child has Autism.
4 years ago, we were one of those families. Our son’s development had halted, and then rapidly regressed. He was withdrawing from the world, and our family. For us, not knowing what was happening was devastating, followed by a mix of relief and grief on receiving the diagnosis. It was the beginning of our journey to understanding autism and our son’s autism. Early interventions enabled him to ever so slowly progress into an amazing young man with a passion that drives him to succeed, vastly different from our initial perception of someone with autism. As our children mature, our own knowledge of the varying perspectives and approaches to their education mature too. We document our journey and we have witnessed a transformation over the years, and we consider how our son would react to being told that he ‘devastated’ us.
Voices of Autism.
According to the Center for Disease Control the incidences of autism have increased to one in 150, and the numbers of people with autism finding their voice is on the rise too giving us plenty of opportunity to listen and understand. After all, how better to learn about autism than from an autistic. Adults, clinically or self-diagnosed with autism, have found many avenues to share their opinions. Stephen Shaw, and Phil Swartz both confirmed that most people with autism do not object to the term ‘autistic’. Indeed they may prefer “autistic”, to “person with autism”, explaining that they are unable to separate or distinguish themselves from their autism or in Phil’s case – Asperger’s. Through the discussion in class, I now appreciate that it is not the label, or language that is used to identify an individual that is contentious, rather, it is the assumptions that can accompany the labeling that can be infuriating to ‘autistics’ or ‘aspies’. Some autistics make huge efforts to re educate society on the positive aspects of their differences, and they point out that many of terms used in association with autism are disrespectful and insulting to those on the spectrum. In an essay titled Autism, Genius, and Greatness written by Frank Klein an adult with autism, he objects to the term “intervention” stating that is … “offensive to autistic people that do not hold that they are the result of something awful. Indeed, there is good that comes from autism, even though the distraught parents of newly-diagnosed autistic children may not be able to see it”. Some web sites of organizations claiming to be a “voice of Autism” host postings where the ‘A’ word is aligned to the ‘C’ of Cancer. The ‘search for a cure’ continues and as parents and families consider extreme measures such as ‘chelation’ to “ rid their child of autism” and many of them have plunged themselves into debt following the promise to ‘defeat autism now’. Others have a more fatalistic approach, and prescribe limited interventions and maximum respect and tolerance. Such sites like neurodiversity.com, and the Blogs of people like autism diva have some extreme reactions to society’s treatment of their population. I believe it’s easier for our family to promote acceptance and tolerance because our son seems on the surface to be better adapted that many on the spectrum. I would be wary of asking the same acceptance from a parent that struggles to engage their child who demonstrates severe self-injurious behaviors, a parent who is exhausted, barely coping with the daily challenges.
Disclosure for a child.
When asked when at what age a child should be told that they have autism Stephen said that he could not recall exactly when he was told. Autism was a familiar word in his home and one that he grew-up with. I was relieved to hear that Stephen supported early parent-to-child disclosure. Autism is a word my son, who has just turned 6, knows very well. We discuss autism as a possible explanation as to why he was so good at knowing his shapes when he was little, and why he could spin almost anything. We tell him what we think explains his autism and what other people think about it, in an attempt to expose him to the variances of society’s perception of autism, and the individuals who live with exceptional challenges everyday. Our daughter has who has ‘Princessism’ is younger, but emotionally her brother’s equal, She competes for attention, so we list the strengths that accompany the diagnosis. We hope that both children understand that their individual qualities are perceived, evaluated and attributed. We teach them self-determination.
By describing our own strengths and challenges we reinforce their understanding of us, while sending a message of acceptance. We see every moment as a teaching opportunity, giving examples like how most people do better when they know what to expect, or what’s expected of them.
Fighting the fear.
We review the studies that investigate such topics as complex brain function or heavy metal retention. We have learned to be sensitive to the facts, rather than the news grabbing headlines. Our son’s regression into autism might well have been caused by an array of separate or combined environmental triggers. Research into the cause of autism continues and it seems that each week findings shift from confirmation to denial. There is no doubt that our family’s heritage contributed to the genetic pre cursive or susceptibility in our son. I have 2 nephews diagnosed with ASD, and other members in both families have many of the exceptions associated with autism. Their strengths have served them well. The adults in our families live interdependently; some are over achievers, and many have some unusual characteristics that the English may describe as mere eccentricities. Our family grew up in a world where we did not purposely uncover our weaknesses or vulnerabilities; we could be ‘a little quirky’, but we had to overcome any challenges often without support. My nephews family have not disclosed their children’s disability. They tell the stigma attached with formalized diagnosis is too great, and may prevent their children from getting a job in the future. So far I have not found a way to advise that unless they have access to all the services that a formal diagnosis would yield, they may not gain the skills needed to maintain employment.
The fear of being different, standing out or being singled-out is understandable. In the book Perfect Targets, Rebekah Heinrichs explains why the bullying of asperser kids in almost inevitable; involving power balance issues, challenges with social interactions, emotional vulnerability, anxiousness, inability to easily adapt to change, and clumsiness add to the likelihood that children with AS will become targets for bullying. But these issues alone are not necessarily contusive to bullying. It takes two or more to bully. The reaction of others unaware or not accepting of autism or Asperger’s creates the setting for bullying.
Disclosed futures.
Society’s attitude toward autism may be changing for the better, but the progress is sensitive to setbacks. I refer to Virginia Tech incident where many were killed at the hands of a loaner reported to be autistic. Generally, people understand that exceptional people archive exceptional feats but any individual strengths can be outweighed by another’s poor perception of autism. Autistics may struggle to make a ‘sure thing’ judgment about disclosure. How can they effectively assess their peers, their boss, and their bank manager when their ‘veil’ obscures their perception? During the informal interview session with Andy – a member of the panel at Antioch, we discussed Internet and e-mail security. When Andy realized that his e-mail exchanges at work may be monitored he said, “ Then I may have already disclosed” He looked concerned, and unsettled. His work environment was not safe. He was not secure. He may have lost the choice to disclose or not.
For our son the teaching of self-determination and self-advocacy has already begun. We use modeling, and social narrative in our every-day-life family classroom. These subjects are a challenge to teach, and we know it may take him a while to learn when to disclose and to whom. Using tools like the self disclosure worksheet from Ask and Tell (Shore, Ruth Elaina Joyner Hane 2004. page 25) will certainly help. There are social goal on his IEP that involve building an understanding of what makes a goof friend, and which remarks are meant as a joke, and which are intended to be hurtful. Our son also needs to begin learning about disclosure, and we have to begin with respecting his individual choice. Stephen’s class made me realize that we should find means to advocate for our son, without disclosure. Up until now, we had ‘used’ his autism to promote awareness, but we can no longer make that choice for him.. Today I asked him if he wanted people to know about “His Autism” I asked if he wanted me to tell people, or if he wanted to choose. He said that other people autism was better than his, that he’s six, maybe when he was 7/8/9, maybe. His words drifted off, and I could tell he was really considering it, but that he also wanted to get home to play. I said that we could talk about it again some time.
References -:
Autism Speaks TJ Maxx, In-store Fundraising CampaignApril 8 - April 28
Center for Disease Control
Frank Klein, 2001 Autism, Genius, and Greatness http://home.att.net/~ascaris1/index.html accessed May 5, 2007 12.48 am
Parent Information Center’s ( PIC)
Rebeka Heinrichs, Perfect Targets review Jan 2003 http://www.socialworktoday.com/archive/swnov2006p18.shtml
accessed 5/8/07 10:15 pm
Shore,S. Ask and Tell: (2004) Self-Advocacy and Disclosure of people on the Autism Spectrum Autism Asperger’s Publishing Co
Friday, April 27, 2007
Interview with an educator
Interview with A special Education Professional. March 29th 2007.
Why did you choose to become a special educator?
I was 11 when I saw the movie “The Miracle Worker” and I wanted to be Ann Bancroft
I began working with the Death and taught myself finger spelling.
YMCA Perkins school for the blind and I was a coordinator for the homeless. It was way back in1974 before the days of IEP’S. I remember when IEP’s were 3 page carbon copied.
What is the best part about your work? Seeing people empowered by the small things I do.
What is most frustrating? Each week it changes. The biggest issue is the anti special education attitude which is due to limited funds and resources. Trying to get school board members to accept and understand the needs of Special Education is a challenge. The “duel system” is tough and a daily frustration.
What does your daily schedule look like? It varies – sometimes I am in my office fielding questions and other times out visiting school in the district, but the rise in responsibility means I spend more time in the office.
How much preparation time and time to consult with colleagues do you have in your schedule? Yes, I do have some preparation time, but not so much consultation with individuals. We tend to work as a group.
What would you want your students’ parents to know? How to advocate properly. The parents have a lot of information but they need to know how to advocate effectively for their children – it’s not about ego.
What is your experience of IEP meetings? In the past, I have been in all positions- Teacher, Special educator, and now as the Local Education Authority (LEA).
What might parents do to improve their relationship with their child’s educator and school system? The school needs to continue to work with partnering – do not take ‘No’ for an answer – and while some parents refuse to come to IEP meetings, we need to work to bring those who may need a little help to join the circle, over time.
How might the relationship with parents be improved? (As discussed above) – refer to a book by Ruby Payne, A Framework for Understanding Poverty. In considering what makes communication difficult we need to understand their own experiences, establish their strengths and their limitations. We need to appreciate that developmentally parents go through a process to understand, and accept their child. Communication can be difficult at times due to their degree of acceptance for who their child truly is, it is important for educators to take readings on this and realize they might be in one place and the parents in another, it is not a bad thing, just a thing to note when communication flow stalls.
Parents of spectrum kids may also be on the spectrum. We need to establishing were parent’s are developmentally – just as we would a student – that’s a great idea.
Continued on page 2
What might parents do to improve their child’s education? Some parents need more skills, others have an attitude of entitlement and there is some lack of responsibility. Parents need education too, so we need to find a way to empower everybody.
Why do you think educators and parents often have an adversarial relationship?
We have to consider that the parents own educational experience has a bearing on how their view school “ I had trouble at school” a parent may eventually admit after several difficult meetings. For some parents school is very authoritative and coming to school brings back memories.
How might this be improved? These cases need constant tending and we need to reaffirm that their voices are heard.
How do you feel you contribute to the improvement of education for all children in New Hampshire (Qualified – how do you affect education, at state level)?
I attend regular meetings with all Special Education officials and collaborate with others – we all have the same concerns and address them through advocacy to the state. I was involved in the Brail bill and ongoing we need to lay the groundwork for people to come into the profession and replace the outgoing teachers who will be retiring. There will be great drain very soon.
Other comments -: Planning trip to Galway University to complete a study comparison on education.
Hope to find ways to reach those parents I describe as “catchable” those who with (just a little more time, educations or one more successful approach) would come on board to support their child’s education.
Easy IEP – It will improve over time.
Questions for the interviewer.
Can we collaborate? Yes absolutely!
Code of ethics for IEP teams (work in progress from educational interventions course at Antioch)
Keep me up to date with proposed parent support/action group, and the Person Centered Vision Planning services
Why did you choose to become a special educator?
I was 11 when I saw the movie “The Miracle Worker” and I wanted to be Ann Bancroft
I began working with the Death and taught myself finger spelling.
YMCA Perkins school for the blind and I was a coordinator for the homeless. It was way back in1974 before the days of IEP’S. I remember when IEP’s were 3 page carbon copied.
What is the best part about your work? Seeing people empowered by the small things I do.
What is most frustrating? Each week it changes. The biggest issue is the anti special education attitude which is due to limited funds and resources. Trying to get school board members to accept and understand the needs of Special Education is a challenge. The “duel system” is tough and a daily frustration.
What does your daily schedule look like? It varies – sometimes I am in my office fielding questions and other times out visiting school in the district, but the rise in responsibility means I spend more time in the office.
How much preparation time and time to consult with colleagues do you have in your schedule? Yes, I do have some preparation time, but not so much consultation with individuals. We tend to work as a group.
What would you want your students’ parents to know? How to advocate properly. The parents have a lot of information but they need to know how to advocate effectively for their children – it’s not about ego.
What is your experience of IEP meetings? In the past, I have been in all positions- Teacher, Special educator, and now as the Local Education Authority (LEA).
What might parents do to improve their relationship with their child’s educator and school system? The school needs to continue to work with partnering – do not take ‘No’ for an answer – and while some parents refuse to come to IEP meetings, we need to work to bring those who may need a little help to join the circle, over time.
How might the relationship with parents be improved? (As discussed above) – refer to a book by Ruby Payne, A Framework for Understanding Poverty. In considering what makes communication difficult we need to understand their own experiences, establish their strengths and their limitations. We need to appreciate that developmentally parents go through a process to understand, and accept their child. Communication can be difficult at times due to their degree of acceptance for who their child truly is, it is important for educators to take readings on this and realize they might be in one place and the parents in another, it is not a bad thing, just a thing to note when communication flow stalls.
Parents of spectrum kids may also be on the spectrum. We need to establishing were parent’s are developmentally – just as we would a student – that’s a great idea.
Continued on page 2
What might parents do to improve their child’s education? Some parents need more skills, others have an attitude of entitlement and there is some lack of responsibility. Parents need education too, so we need to find a way to empower everybody.
Why do you think educators and parents often have an adversarial relationship?
We have to consider that the parents own educational experience has a bearing on how their view school “ I had trouble at school” a parent may eventually admit after several difficult meetings. For some parents school is very authoritative and coming to school brings back memories.
How might this be improved? These cases need constant tending and we need to reaffirm that their voices are heard.
How do you feel you contribute to the improvement of education for all children in New Hampshire (Qualified – how do you affect education, at state level)?
I attend regular meetings with all Special Education officials and collaborate with others – we all have the same concerns and address them through advocacy to the state. I was involved in the Brail bill and ongoing we need to lay the groundwork for people to come into the profession and replace the outgoing teachers who will be retiring. There will be great drain very soon.
Other comments -: Planning trip to Galway University to complete a study comparison on education.
Hope to find ways to reach those parents I describe as “catchable” those who with (just a little more time, educations or one more successful approach) would come on board to support their child’s education.
Easy IEP – It will improve over time.
Questions for the interviewer.
Can we collaborate? Yes absolutely!
Code of ethics for IEP teams (work in progress from educational interventions course at Antioch)
Keep me up to date with proposed parent support/action group, and the Person Centered Vision Planning services
Sunday, March 11, 2007
Preparing for the Introduction of Cognitive Therapy treatment model.
Laying the foundations for self-awareness, and assuming the inevitable need for therapy.
It is very likely that my son will at some time in his life benefit from Cognitive Therapy (CT), therefore it seems logical to begin establishing the underlying principals now.
Rationalizing the practices of introducing the CT treatment model to an adult or an adolescent would require the use of different approaches. There is a need for some creativity when to introducing the idea to a younger child. Just as considering the client’s developmental levels and their diagnosis (DX) is important when relating the treatment model, the language and props used for a adolescent would be considerably different when helping a child of Kindergarten age.
Friedburg describes the first steps of introducing the CT model pointing out that a younger child may lack experience in articulating their emotional state, and recommends teaching children how to report their mood prior to beginning cognitive interventions. Once a range of emotions is easily identified, the work of rating intensity begins.
We began the process of identifying and labeling emotions in our family a before my son entered preschool. Once there, emotions were explored by use of positive modeling in class, a variety of books, and Second Step, a violence prevention curriculum. Second Step uses puppets to describe emotions such as “Glad, Mad, Sad and Scared’. And is very dependant on the skills of those who deliver the program. The puppets can be difficult for children on the Autism Spectrum to related to. My son related better to representations and descriptions of emotions in books such as “How are you peeling? Foods with moods”. We also found that using social stories or scripts to help both our children gain a better understanding of feelings. Recently we have started to relate a typical situation where one of us would display and identify a feeling, and narrate or interpret ‘in-the-moment’ event to explain what circumstance may produce feeling in each of us. For example-: “When mummy rushes around she might be worried and anxious about being late”. The ‘real-time’ example would be “I am getting worried about being late. Please get dressed so we can get ready to go because I am anxious about being late”.
My son can identify and label a variety of feelings and emotions and using the social stories or narrative interpretation can increase his emotional vocabulary. He learns well by associating one emotion to another in a context that he is failure with and I can introduce the concept of rating with the appropriateness of the words I use. For example, I combine ‘worried’ with ‘anxious’, but would avoid saying I ‘hate’ that TV show. At age 3 he struggled to get beyond ‘mad’ and ‘glad’. Now at the age of 5 he can identify excited, frustrated, mad, worried, scared, jealous, calm, sad, relaxed, disappointed, bored, upset, distracted and more. He can be extremely kind and thoughtful but a bit of a sore looser at times so we have begun to discuss those qualities and how when he behaves in a certain way it can effect how others feel. He is learning rapidly to identify and name his own emotions. He will spontaneously state how he feels, and how others’ actions made him feel, or how certain events made him feel. Sometime he seems to be confused and will make statements such as “Waiting ‘till my birthday will be just too boring!” I believe that “boring” is not the feeling that he is describing as his vocal tone suggests something more intense, so I reply. “Maybe boring is not quite what you mean. Perhaps you feel a little frustrated, or a bit impatient.” He replies that he is both frustrated and impatient. I say that I understand and we count the days until his birthday. I distract him with a discussion of what gifts he would like to receive.
Intensity teaching.
It seems more natural to combine recognizing feelings and emotions with some references to intensity. At this time, we have yet to establish a rating scale with more that 3 degrees. For example, yesterday my son was waiting for me to play “Go- Fish” with him. He had waited too long, and he came to protest. I asked “ When mommy takes too long at the computer, does that make you a little bit mad, are you very mad, or is it the end of the world (an idiom well used and accepted as an over statement) Of course he chose ‘the end of the world’. He had been waiting a very long time.
He is learning how to use his voice and his tone will change with intensity although he often uses impatient sounding voice. His use body language to enhance his communication is emerging and he is able to exaggerate his body movement in order to make is reason or justification more compelling. His ability to read others emotions seems to be improving but he frequently objects to any exaggerated body gestures that we use in an attempt to give him clues as to our emotional states. Because his sense of and control over his own body language is still emerging using ‘the body read’ to understand his responses to particular questions or circumstances may be difficult.
How to show a 5-year-old that feelings, thoughts, behavior, and health are all connected and all happening within environment.
I showed my son a picture of four gears and asked him what would happen to all the gears if we moved just one of them. “They all move.” He stated immediately.
A person’s acceptance of the principles that CT is based upon is critical for the success of the treatment and relating to their special interest can help the process. What better visual representation to use for a child who fixates on turning wheels that interlocking gears. Each of the four gears has removable and replaceable labels that are written or visual representations of feelings, thoughts, behaviors, and physiology or health. The gear model will work for my son. His passion for inanimate objects and the stimulation he receives when he is control is intense. My daughter may be happier with the balloon model, and another child I know would love to see 4 stunt kites all connected.
It might be challenging to for both my children to accept that they have varying degrees of control over what each individual gear or balloon represents. The use of social stories and appropriately selected picture story-books can help to promote the idea that we all have some influence over our thoughts, but no control of our feelings. They may struggle more with the fact that we all can learn to control our behavior and yet our reaction to the events in any one circumstances are part of whom we are. Currently I would say of my children that they have little way of separating their behavior from their emotional state and may not understand their own physiology or why they react in certain ways. It is often the behavior that they are ether reprimanded or praised for and little attention is given to the cognitive elements. Perhaps an earlier introduction of CT in their daily learning would promote an advanced level of maturity and an overall better outcome. I predict that for my son the ability to understand and control his thoughts and behavior will make a huge difference to him, and I hope that we can set him on an earlier path of discovery. A thought record may work well for him, as currently the way we modify and implement social stories is equivalent to a thought record without the word ‘sometimes’. Although there is no directive in the thought record, there is an objective in the treatment environment that thought records are completed within, and therefore there is a desired positive outcome.
In the absence of a formal treatment environment, I use our numerous games of ‘Go Fish’ and ‘Uno’ to create an episode of treatment. My son focuses on the game and I ask him about events of the day and what when through his mind. He asks me to stop talking and play the game. I create an event by challenging his play, or deviating from his interpretation of the rules. He responds predictably and gets a little mad at me. We identify his feelings and agree upon a rating. We investigate what worked, and what didn’t work. Generally, what works is sticking to the rules of the game or playing a different game. We decide that what does not work would be when someone refuses to play anymore, or becomes very mad at loosing. I judge just how much of the ‘Family Therapy’ he can tolerate and we get on with the game. He normally wins.
It is very likely that my son will at some time in his life benefit from Cognitive Therapy (CT), therefore it seems logical to begin establishing the underlying principals now.
Rationalizing the practices of introducing the CT treatment model to an adult or an adolescent would require the use of different approaches. There is a need for some creativity when to introducing the idea to a younger child. Just as considering the client’s developmental levels and their diagnosis (DX) is important when relating the treatment model, the language and props used for a adolescent would be considerably different when helping a child of Kindergarten age.
Friedburg describes the first steps of introducing the CT model pointing out that a younger child may lack experience in articulating their emotional state, and recommends teaching children how to report their mood prior to beginning cognitive interventions. Once a range of emotions is easily identified, the work of rating intensity begins.
We began the process of identifying and labeling emotions in our family a before my son entered preschool. Once there, emotions were explored by use of positive modeling in class, a variety of books, and Second Step, a violence prevention curriculum. Second Step uses puppets to describe emotions such as “Glad, Mad, Sad and Scared’. And is very dependant on the skills of those who deliver the program. The puppets can be difficult for children on the Autism Spectrum to related to. My son related better to representations and descriptions of emotions in books such as “How are you peeling? Foods with moods”. We also found that using social stories or scripts to help both our children gain a better understanding of feelings. Recently we have started to relate a typical situation where one of us would display and identify a feeling, and narrate or interpret ‘in-the-moment’ event to explain what circumstance may produce feeling in each of us. For example-: “When mummy rushes around she might be worried and anxious about being late”. The ‘real-time’ example would be “I am getting worried about being late. Please get dressed so we can get ready to go because I am anxious about being late”.
My son can identify and label a variety of feelings and emotions and using the social stories or narrative interpretation can increase his emotional vocabulary. He learns well by associating one emotion to another in a context that he is failure with and I can introduce the concept of rating with the appropriateness of the words I use. For example, I combine ‘worried’ with ‘anxious’, but would avoid saying I ‘hate’ that TV show. At age 3 he struggled to get beyond ‘mad’ and ‘glad’. Now at the age of 5 he can identify excited, frustrated, mad, worried, scared, jealous, calm, sad, relaxed, disappointed, bored, upset, distracted and more. He can be extremely kind and thoughtful but a bit of a sore looser at times so we have begun to discuss those qualities and how when he behaves in a certain way it can effect how others feel. He is learning rapidly to identify and name his own emotions. He will spontaneously state how he feels, and how others’ actions made him feel, or how certain events made him feel. Sometime he seems to be confused and will make statements such as “Waiting ‘till my birthday will be just too boring!” I believe that “boring” is not the feeling that he is describing as his vocal tone suggests something more intense, so I reply. “Maybe boring is not quite what you mean. Perhaps you feel a little frustrated, or a bit impatient.” He replies that he is both frustrated and impatient. I say that I understand and we count the days until his birthday. I distract him with a discussion of what gifts he would like to receive.
Intensity teaching.
It seems more natural to combine recognizing feelings and emotions with some references to intensity. At this time, we have yet to establish a rating scale with more that 3 degrees. For example, yesterday my son was waiting for me to play “Go- Fish” with him. He had waited too long, and he came to protest. I asked “ When mommy takes too long at the computer, does that make you a little bit mad, are you very mad, or is it the end of the world (an idiom well used and accepted as an over statement) Of course he chose ‘the end of the world’. He had been waiting a very long time.
He is learning how to use his voice and his tone will change with intensity although he often uses impatient sounding voice. His use body language to enhance his communication is emerging and he is able to exaggerate his body movement in order to make is reason or justification more compelling. His ability to read others emotions seems to be improving but he frequently objects to any exaggerated body gestures that we use in an attempt to give him clues as to our emotional states. Because his sense of and control over his own body language is still emerging using ‘the body read’ to understand his responses to particular questions or circumstances may be difficult.
How to show a 5-year-old that feelings, thoughts, behavior, and health are all connected and all happening within environment.
I showed my son a picture of four gears and asked him what would happen to all the gears if we moved just one of them. “They all move.” He stated immediately.
A person’s acceptance of the principles that CT is based upon is critical for the success of the treatment and relating to their special interest can help the process. What better visual representation to use for a child who fixates on turning wheels that interlocking gears. Each of the four gears has removable and replaceable labels that are written or visual representations of feelings, thoughts, behaviors, and physiology or health. The gear model will work for my son. His passion for inanimate objects and the stimulation he receives when he is control is intense. My daughter may be happier with the balloon model, and another child I know would love to see 4 stunt kites all connected.
It might be challenging to for both my children to accept that they have varying degrees of control over what each individual gear or balloon represents. The use of social stories and appropriately selected picture story-books can help to promote the idea that we all have some influence over our thoughts, but no control of our feelings. They may struggle more with the fact that we all can learn to control our behavior and yet our reaction to the events in any one circumstances are part of whom we are. Currently I would say of my children that they have little way of separating their behavior from their emotional state and may not understand their own physiology or why they react in certain ways. It is often the behavior that they are ether reprimanded or praised for and little attention is given to the cognitive elements. Perhaps an earlier introduction of CT in their daily learning would promote an advanced level of maturity and an overall better outcome. I predict that for my son the ability to understand and control his thoughts and behavior will make a huge difference to him, and I hope that we can set him on an earlier path of discovery. A thought record may work well for him, as currently the way we modify and implement social stories is equivalent to a thought record without the word ‘sometimes’. Although there is no directive in the thought record, there is an objective in the treatment environment that thought records are completed within, and therefore there is a desired positive outcome.
In the absence of a formal treatment environment, I use our numerous games of ‘Go Fish’ and ‘Uno’ to create an episode of treatment. My son focuses on the game and I ask him about events of the day and what when through his mind. He asks me to stop talking and play the game. I create an event by challenging his play, or deviating from his interpretation of the rules. He responds predictably and gets a little mad at me. We identify his feelings and agree upon a rating. We investigate what worked, and what didn’t work. Generally, what works is sticking to the rules of the game or playing a different game. We decide that what does not work would be when someone refuses to play anymore, or becomes very mad at loosing. I judge just how much of the ‘Family Therapy’ he can tolerate and we get on with the game. He normally wins.
'Family Therapy’
Executive Function, Central Coherence and Theory of Mind. A trickle of information.
My five year-old son and I often talk about his school day while we drive to collect his sister. During one of these conversations, I asked him how he felt about something that happened in school that day. He said, “I can’t tell you”. “Why not?” I asked. He replied “Because I am not at school now”.
During another exchange, I asked my son how Mrs. B felt about something, and he replied, “I don’t know because I am not with her”.
I attempt to rationalize his reposes and think about his strengths and challenges to help me determine the brain activity that might explain his answers.
While global and contextual possessing may be one in the same function, they are both considered functions of central coherence that promote the generalization of skills, thoughts and understanding and therefore offer plausible expatiation as to why individuals with ASD have difficulty with context.
I would say that my son is developing his generalization skills. He happily recognizes his friends and teachers out of school, and he is able to adapt and generalizes skills from one place to another, interchanging activities, and across disciplines. I am considering that he might not wish to discuss school time activity because he has made the transition from school to the journey and either cannot or is reluctant to “put his mind back into school”, and that he thinks the school ends when leaves. This may also explain why getting him to attend to homework is such a challenge.
On the contrary, occasionally he tries to replicate the school environment at home, and will often act out school activities and pretend to be the teacher.
In order to help him further generalize, and support his central coherence and executive function we should attempt to re frame the learning process. While he has been successfully encouraged to attend school by use of a simple social story, “We go to school to learn, play and make friends, so that when we grow up we can have choices and be happy.” The story could easily be adapted to promote the concept that learning takes place all of the time, and in different environments.
Today is Valentines Day – but the treats from friends and all the parties are postponed due to the heavy snow. I monitor my children as they play at home. My son is agitated and shouts at his sister “Valentines day is tomorrow!” I have to intervene before he gets too upset. She’s correct” I say, “ It is just that your Valentines Day party is postponed until tomorrow. He accepts this explanation, but attempts to justify his behavior and says, “Yes. It’s just that Valentines Party Day is tomorrow”
I evaluate the components that account for his behavior.
His lack of understanding could be due to simply not knowing that Valentines Day is always on the 14th of February. He could have confused it with holidays like Thanksgiving or Presidents Day for example, as these are specific ‘days’ rather than special ‘dates’. When his teacher, anticipating the snow day, told him the Valentines Day party would be tomorrow, he thought that the day was moved. This could be typically developmentally appropriate or be an indication of weak central coherence in one with a diagnosis of PDD NOS.
The elevation of his tone and escalation of his anger is, I believe due to his deficits in executive function. Sensory wise he may already be in a heightened ‘fight or flight’ mode as the snow day is a departure from his regular schedule and his is therefore more likely to over react, but his inability to inhibit and rationalize his behavior and reactions all can be associated with the function of the limbic system.
His attempts to justify his behavior are motivated by his need for control. He reluctantly accepts my ruling, and quickly rethinks his argument which indicates that the parts of his executive function that manages other cognitive processes, such as planning, working memory and retrieval, are present and developing.
Currently we are working hard on the skill of persuasion. Ensuring that my son knows that he has to be successful at persuasion if he is to get what he wants helps to support his weak central coherence by giving him the big picture. We model what persuasion is and I allow myself to be persuaded in areas where I know both my children are motivated, and can be successful. At the same time my son is reminded of the presence of others thoughts and examines his own theory of mind in the process.
Recently my son and I had a disagreement surrounding being kind and thoughtful to others.
It was a neighbor’s birthday, and my son knows the little girl and they seem to like each other. I wanted to deliver a birthday card. My son did not. I described how people bringing gifts and cards would make the girl feel happy and that it was good to show people that we care about them. He accepted that receiving gifts and cards on his birthday made him feel good, yet he stated that he would not go reasoning that he not want to go to her party.
The discussion ended with an ultimatum.
The situation was aggravated by the departure from his regular routine, and later I realized that he had planned his activities and knew what he wanted to do when we arrived home. My rationale of how his actions could affect how others feel had little impact as I did not successfully related to the big picture, supporting his central coherence and the ‘social story’ was delivered as a directive rather than in preparation.
In attempting to relate his reasoning, our discussion and the outcome to both our brain functions, I may prevent any reoccurrences. Ultimatums are not productive and go against the principals of collaborative imperialism and guided discovery. I did not enquire as to what he wanted to do when we got home, He did not tell me when wanted to do something else that he had already planned in his mind. I did not prepare him properly or gain his buy-in. We both lacked a developed sense of Theory of Mind.
When the time came for the visit, once more I asked him to come with me to deliver the card.
He was delighted to do so, and the visit went well.
With hindsignht, I can see that the incident became a power struggle.
This is an emerging issue, enhanced by my sons need for predictability and control, supported by our choice behavioral management strategy, and could be a typical developmental phase.
I prepare to re visit the power struggle issue, employing a new social story. The story will be something he and I write together and will follow the “The Macdonald Way” (Our family mission) He may not clearly understand that his is challenging me for control, and I have to find way to illustrate and reinforce the expectations that we have as a family. The next time a similar situation arises, I will help him understand that it is OK for him to get mad and challenge me. I will discuss with him the many choices that he does have control over, but that ultimately it is my job to keep him safe, help him understand, and grow up to be the best he can be.
My five year-old son and I often talk about his school day while we drive to collect his sister. During one of these conversations, I asked him how he felt about something that happened in school that day. He said, “I can’t tell you”. “Why not?” I asked. He replied “Because I am not at school now”.
During another exchange, I asked my son how Mrs. B felt about something, and he replied, “I don’t know because I am not with her”.
I attempt to rationalize his reposes and think about his strengths and challenges to help me determine the brain activity that might explain his answers.
While global and contextual possessing may be one in the same function, they are both considered functions of central coherence that promote the generalization of skills, thoughts and understanding and therefore offer plausible expatiation as to why individuals with ASD have difficulty with context.
I would say that my son is developing his generalization skills. He happily recognizes his friends and teachers out of school, and he is able to adapt and generalizes skills from one place to another, interchanging activities, and across disciplines. I am considering that he might not wish to discuss school time activity because he has made the transition from school to the journey and either cannot or is reluctant to “put his mind back into school”, and that he thinks the school ends when leaves. This may also explain why getting him to attend to homework is such a challenge.
On the contrary, occasionally he tries to replicate the school environment at home, and will often act out school activities and pretend to be the teacher.
In order to help him further generalize, and support his central coherence and executive function we should attempt to re frame the learning process. While he has been successfully encouraged to attend school by use of a simple social story, “We go to school to learn, play and make friends, so that when we grow up we can have choices and be happy.” The story could easily be adapted to promote the concept that learning takes place all of the time, and in different environments.
Today is Valentines Day – but the treats from friends and all the parties are postponed due to the heavy snow. I monitor my children as they play at home. My son is agitated and shouts at his sister “Valentines day is tomorrow!” I have to intervene before he gets too upset. She’s correct” I say, “ It is just that your Valentines Day party is postponed until tomorrow. He accepts this explanation, but attempts to justify his behavior and says, “Yes. It’s just that Valentines Party Day is tomorrow”
I evaluate the components that account for his behavior.
His lack of understanding could be due to simply not knowing that Valentines Day is always on the 14th of February. He could have confused it with holidays like Thanksgiving or Presidents Day for example, as these are specific ‘days’ rather than special ‘dates’. When his teacher, anticipating the snow day, told him the Valentines Day party would be tomorrow, he thought that the day was moved. This could be typically developmentally appropriate or be an indication of weak central coherence in one with a diagnosis of PDD NOS.
The elevation of his tone and escalation of his anger is, I believe due to his deficits in executive function. Sensory wise he may already be in a heightened ‘fight or flight’ mode as the snow day is a departure from his regular schedule and his is therefore more likely to over react, but his inability to inhibit and rationalize his behavior and reactions all can be associated with the function of the limbic system.
His attempts to justify his behavior are motivated by his need for control. He reluctantly accepts my ruling, and quickly rethinks his argument which indicates that the parts of his executive function that manages other cognitive processes, such as planning, working memory and retrieval, are present and developing.
Currently we are working hard on the skill of persuasion. Ensuring that my son knows that he has to be successful at persuasion if he is to get what he wants helps to support his weak central coherence by giving him the big picture. We model what persuasion is and I allow myself to be persuaded in areas where I know both my children are motivated, and can be successful. At the same time my son is reminded of the presence of others thoughts and examines his own theory of mind in the process.
Recently my son and I had a disagreement surrounding being kind and thoughtful to others.
It was a neighbor’s birthday, and my son knows the little girl and they seem to like each other. I wanted to deliver a birthday card. My son did not. I described how people bringing gifts and cards would make the girl feel happy and that it was good to show people that we care about them. He accepted that receiving gifts and cards on his birthday made him feel good, yet he stated that he would not go reasoning that he not want to go to her party.
The discussion ended with an ultimatum.
The situation was aggravated by the departure from his regular routine, and later I realized that he had planned his activities and knew what he wanted to do when we arrived home. My rationale of how his actions could affect how others feel had little impact as I did not successfully related to the big picture, supporting his central coherence and the ‘social story’ was delivered as a directive rather than in preparation.
In attempting to relate his reasoning, our discussion and the outcome to both our brain functions, I may prevent any reoccurrences. Ultimatums are not productive and go against the principals of collaborative imperialism and guided discovery. I did not enquire as to what he wanted to do when we got home, He did not tell me when wanted to do something else that he had already planned in his mind. I did not prepare him properly or gain his buy-in. We both lacked a developed sense of Theory of Mind.
When the time came for the visit, once more I asked him to come with me to deliver the card.
He was delighted to do so, and the visit went well.
With hindsignht, I can see that the incident became a power struggle.
This is an emerging issue, enhanced by my sons need for predictability and control, supported by our choice behavioral management strategy, and could be a typical developmental phase.
I prepare to re visit the power struggle issue, employing a new social story. The story will be something he and I write together and will follow the “The Macdonald Way” (Our family mission) He may not clearly understand that his is challenging me for control, and I have to find way to illustrate and reinforce the expectations that we have as a family. The next time a similar situation arises, I will help him understand that it is OK for him to get mad and challenge me. I will discuss with him the many choices that he does have control over, but that ultimately it is my job to keep him safe, help him understand, and grow up to be the best he can be.
Last months assignment
“Why label?”
The week started with an article in New Scientist Tech “When sociable computing meets autism”
The researchers were interested by a film created by Amanda Baggs’s “In My Language”.
While reading the article, I began to feel uncomfortable. If scientists could invent a “mind reading tool” to help individuals with Autism to understand emotions, “then everyone will know what I’m thinking!” I said it aloud, Homer Simpson-style.
Luckily, I can’t stay on one topic for long, so I visited Antioch First Class to see what’s up for next weekend. Amanda Baggs is one of the people we can research for a brainstorm session during our first class with Stephen Shaw. I am delighted as the first time I ‘met’ Amanda she was a major contributor to autistics.org The real voice of Autism one of the many websites added to ‘my favorites’ when we first realized our child was on the Autism spectrum. The site was refreshing but sometimes shocking suggesting that other Autism websites and organizations we built by neuro-typical people who were ignorant of Autism and that their assumptions were insulting to those on the spectrum. It was the first site to make me think about how we as a family perceive Autism and how we frame it at home, in school and in our community. We thought we needed to make a positive introduction of Autism to our then 2 and ½ -year-old son who was diagnosed with Pervasive Developmental Disorder Non Otherwise Specified (PDD NOS), but we were not sure how. Did he need to know? When should we tell him? What should we say?
I had read books by Luke Jackson a young author with Asperger’s Syndrome from the UK. Luke compels parents to tell their children what “the thing” is as soon as they can. Others in the fields of therapy and research working with children on the spectrum, describe seeing a huge weight removed once they understand that the difficulties and differences that they experience have a name, and that there are other people like them.
Amanda defers to Jane Meyerding for her explanation of “why label?”. Jane describes her acceptance of the Asperger’s label “If I could understand my life for the first time only by understanding how my brain was different from the majority of brains, how much did I really have in common with all those neuro-typicals (NTs) out there, compared to whom I'd been judged inadequate so many times.”
As our family navigated our son’s early intervention process, we accepted the labels as signposts. The signposts told us which way to go. Rather than categorizing, or stereotyping behaviors and personality, the explanations of our son’s Autism also helped his sister, his peers, our friends and extended family. All of who now have experience of one person’s Autism to include in their understanding of the diagnosis. We chose to tell our son (and our daughter) about how we understood his Autism, and how others may understand it too. As our son grows, we hope he will find the explanations, labels and signposts helpful. We hope he will not be limited or undermined by the diagnosis and others perception of his ‘disorder’ Each day our soon-to-be six- year-old son shares more of his Autism with us, and as we build a better understanding, we make the least dangerous assumptions possible.
In her video Amanda states, “This is not a freak show.” And raising awareness and creating positive perceptions and changing society’s negative viewpoint can be a painful and slow process, so we take time to introduce people to Autism and we ‘show off’ our son as proud parents do. And every day he reminds us that he is truly an individual with Autism, and not “an Autistic’.
Research links-:
http://www.newscientisttech.com/article/mg19325917.100-when-sociable-computing-meets-autism.html Accessed 2.19.2007
http://www.youtube.com/results?search_query=Amanda+Baggs&search=Search Accessed 2.24.2007
http://amanda.autistics.org/ Accessed 2.19.2007
http://www.autistics.org/ Accessed 2.19. 2007
http://www.inlv.demon.nl/subm-brain.jane.eng.html Accessed 2.10.7007
http://www.jacquijackson.com/books/freaksgeeks.html Accessed 2.20.2007
The week started with an article in New Scientist Tech “When sociable computing meets autism”
The researchers were interested by a film created by Amanda Baggs’s “In My Language”.
While reading the article, I began to feel uncomfortable. If scientists could invent a “mind reading tool” to help individuals with Autism to understand emotions, “then everyone will know what I’m thinking!” I said it aloud, Homer Simpson-style.
Luckily, I can’t stay on one topic for long, so I visited Antioch First Class to see what’s up for next weekend. Amanda Baggs is one of the people we can research for a brainstorm session during our first class with Stephen Shaw. I am delighted as the first time I ‘met’ Amanda she was a major contributor to autistics.org The real voice of Autism one of the many websites added to ‘my favorites’ when we first realized our child was on the Autism spectrum. The site was refreshing but sometimes shocking suggesting that other Autism websites and organizations we built by neuro-typical people who were ignorant of Autism and that their assumptions were insulting to those on the spectrum. It was the first site to make me think about how we as a family perceive Autism and how we frame it at home, in school and in our community. We thought we needed to make a positive introduction of Autism to our then 2 and ½ -year-old son who was diagnosed with Pervasive Developmental Disorder Non Otherwise Specified (PDD NOS), but we were not sure how. Did he need to know? When should we tell him? What should we say?
I had read books by Luke Jackson a young author with Asperger’s Syndrome from the UK. Luke compels parents to tell their children what “the thing” is as soon as they can. Others in the fields of therapy and research working with children on the spectrum, describe seeing a huge weight removed once they understand that the difficulties and differences that they experience have a name, and that there are other people like them.
Amanda defers to Jane Meyerding for her explanation of “why label?”. Jane describes her acceptance of the Asperger’s label “If I could understand my life for the first time only by understanding how my brain was different from the majority of brains, how much did I really have in common with all those neuro-typicals (NTs) out there, compared to whom I'd been judged inadequate so many times.”
As our family navigated our son’s early intervention process, we accepted the labels as signposts. The signposts told us which way to go. Rather than categorizing, or stereotyping behaviors and personality, the explanations of our son’s Autism also helped his sister, his peers, our friends and extended family. All of who now have experience of one person’s Autism to include in their understanding of the diagnosis. We chose to tell our son (and our daughter) about how we understood his Autism, and how others may understand it too. As our son grows, we hope he will find the explanations, labels and signposts helpful. We hope he will not be limited or undermined by the diagnosis and others perception of his ‘disorder’ Each day our soon-to-be six- year-old son shares more of his Autism with us, and as we build a better understanding, we make the least dangerous assumptions possible.
In her video Amanda states, “This is not a freak show.” And raising awareness and creating positive perceptions and changing society’s negative viewpoint can be a painful and slow process, so we take time to introduce people to Autism and we ‘show off’ our son as proud parents do. And every day he reminds us that he is truly an individual with Autism, and not “an Autistic’.
Research links-:
http://www.newscientisttech.com/article/mg19325917.100-when-sociable-computing-meets-autism.html Accessed 2.19.2007
http://www.youtube.com/results?search_query=Amanda+Baggs&search=Search Accessed 2.24.2007
http://amanda.autistics.org/ Accessed 2.19.2007
http://www.autistics.org/ Accessed 2.19. 2007
http://www.inlv.demon.nl/subm-brain.jane.eng.html Accessed 2.10.7007
http://www.jacquijackson.com/books/freaksgeeks.html Accessed 2.20.2007
Wednesday, February 21, 2007
Amanda Baggs on CNN. You Go Girl!
We are still working to improve both the environment (society) and our sons (PDD NOS) ability to live within this space we call life. Amanda is one who can help us all understand how it is to think and feel differently. She and many other individuals with Autism Spectrum Disorders can help us understand better how we all interact with and fit into this world. I have huge respect for anyone who continuously contributes to the real voice of Autism, and it had helped our family by giving us the encouragement to continue to help our son be the best that he can be. Amanda Keep on keeping on!
Watch CNN @10 ET tonight!
Watch CNN @10 ET tonight!
Saturday, January 27, 2007
Mirrors in mind. Understanding for better Counseling for Individuals with Autism Spectrum Disorder.
In the practice of traditional psychology, a therapist has to consider the following:
Readiness – the clients’ receptiveness and manage the expectations of the client and their family.A therapist determines developmental, age appropriate treatment, and constantly modifies techniques, shifting focus, and reframing in pursuit of a better understanding of behavior. Therapists carefully consider any diagnosis (Dx) held by the client to achieve an understanding of the brain function, and maintain a rational approach. The Article in Scientific American; “The Teen Brain” illustrates just how the brain changes as it ‘grows’ from child-hood through adolescence and on to adulthood, and as individuals, helpers and therapists we can understand how varied stages of development influence our decision making. The ‘growth’, more accurately depicted as concentration in areas of activity, result in what Jay N. Giedd, a psychiatrist and investigator in the Child Psychology Branch of the National Institute of Mental Health, describes as ‘synaptic pruning’. Pruning is the process where the developing brain eliminates unnecessary connections between neurons, and in return producing a more efficient conduction of nerve impulses. The less effective connections are terminated and more controlling impulses are strengthened, creating the visual appearance of multiple firings of neurons in more concentrated areas. These areas shift as the child brain progresses though adolescence, and becomes adult.
Celia Oliver, PhD, PsyD, shared with the class that she specializes in anxiety, and described what she calls “Celia’s biases”
· “It’s all in the brain.
· What’s working – find the catalyst function in the brain.
· The de-pathology of the disorder.
· All disorders are Neurological.
· Counseling is cool!”
Celia described abnormalities of the limbic system, the Amygdala and the Hippocampus and their role in the individual with ASD connected with socioemotional perception and memory impairments.
Other abnormalities such as Cereballar-frontal system effect impairments in automatic and voluntary special attention abilities, and frontal-striatal pathways cause defective sensory gating resulting in difficulties inhibiting repetitive thoughts, speech and actions.
Picture showing three-dimensional representations of Amygdala and Hippocampus.
The Mirror Neuron System.
Although it is vital to understand all these differences in the function of the brain before building a successful treatment plan or intervention, the advances in medical research and technology in the past few years has given us more knowledge of how our brain works that has been known for centuries. This is an exciting time in the world of neuroscience, and the discovery of the mirror neurons system (MNS) in the Motor cortex in 1996 may hold the key to unlocking Autism. A research group of neuroscientists Giacomo Rizzolatti, Leonard Fogassi and Vittorio Gallese that also included Luciano Fadiga worked together at the University of Parma, Italy. They were probing the brain of a macaque monkey when they discovered a curious cluster of cells in the premotor cortex, an area of the brain responsible for planning movements. The cluster of cells fired when not only the monkey performed an action, but also when the monkey saw the same action performed by someone else. The cells responded the same way whether the monkey reached out to grasp an object, or merely watched as another monkey or a human did. Because the cells reflected the actions that the monkey observed in others, the neuroscientists named them “mirror neurons.” Later experiments confirmed the existence of mirror neurons in humans and revealed that in addition to mirroring actions, the cells reflected sensations and emotions.
The ASD mirror neuron system.
Numerous brain imagining and neuro recording studies indicate a variety of neurological and anatomical (Hadjik-hani, Joseph et al 2006) differences between the brains of those diagnosed with Autism Spectrum Disorder (ASD) or with Asperger’s Syndrome (AS) and Neurotypical (NT) brains. Functional evidence for the presence of MNS in humans comes from several studies using transcranial magnetic stimulation (TMS), electroencephalography (EEG), megnetoencephalography (MEG), and functional magnetic resonance imaging (fMRI) methodologies.
Studies of individuals with ASD have shown malfunctioning MNS in the Inferior Frontal Gyrus (part of the pre-motor cortex) that explains inaccuracy in assessing the intension of others, and may help cognitive scientists understand how theory of mind (ToM) often missing in those with ASD, is developed. Both the imitation and the attribution of mental states involve translating from another person’s perspective into one’s own. In addition, imitation requires a shared representation of perceived and executed action, and there is evidence suggesting that the MNS together with the superior parietal lobule serve this function (Iacoboni and others 1999; Williams and others 2001; Decety and others 2002; Heiser and others 2003; Koski and others 2003; Leslie and others 2004; Buxbaum and others 2005). Several studies have found imitative deficits in autism (Williams and others 2004), including deficits in imitating simple body movements and actions with symbolic meaning (Rogers and Pennington 1991) and in imitating facial expressions of emotion (Hertzig and others 1989; Loveland and others 1994). These deficits are present early in development (Rogers and others 2003). Together, these findings suggest that the basis for imitative and empathic deficits in autism could arise from a dysfunction in the MNS. (Hadjikhani, Joseph et al 2006)
The Mu wave component.
The Scientific American article “ Broken mirrors” describing findings of a studies of the MNS in people with Au-tism, researchers relied upon observation that the firing of neurons in the pre-motor cortex suppresses the Mu wave – a component of the EEG measurement. Mu waves, also known the comb or wicket rhythm, are electromagnetic oscillations in the frequency range of 8-13 Hz and appear in bursts of at 9 - 11 Hz. Mu wave patterns arise from synchronous and coherent electrical activity of large groups of neurons in the human brain. This wave activity appears to be associated with the motor cortex (central scalp), and is diminished with movement or an intent to move, or when others are observed performing actions.
In the Ramachandran Oberman study, ASD brain the Mu waves were not suppressed when the MNS in the pre-motor cortex fired when the subject observed an action. These findings support others that suggest the MNS of children with Autism are deficient.
Discussion -: Mu waves and the perception of reality.
If the Mu wave if not suppressed, could they communicate ‘actual’ rather than ‘observed’ pre motor and motor movements? The individual with ASD may confuse what they see happening to others with what is happening to themselves. If this dysfunction also occurs in other areas of the brain, then it is possibly a reason why children with Autism will avoid using their imagination, and struggle to engage in pretend play. As sleep pattern disruption is common in individuals with ASD, dysfunctional MNS could be associated with fear of dreaming or reluctance to disengage, or relax, or “switch off” in readiness for sleep. When behavioral evidence of the lack of ToM is identified we can also observe the individual with ASD assumes that others around them automatically know what they are thinking, and struggle to grasp that someone else may have a different perspective from that of their own.
Considering all these differences between individual brain functions, it is important when working with children on the spectrum, that we manage our speech (tone, intensity/ volume and pace) facial expression and whole body language communication. The therapist has to find ways to uncover the challenges without further reinforcement of the triggers of behaviors. These individuals when given a structure of understanding can learn to identify for example; what is real, and what is not. What is a threat, and what may be a gesture of friendship. If the MSN fa-cilitate empathy allowing NT individuals to feel the emotions of others, to identify and understand their feelings and motives and see things from their perspective, then the intervention methods we chose differ greatly when working with those who have deficits in these areas. Research shows that in individuals on the spectrum co mor-bidity is common and many studies have found elevated rates of mood disorders and anxiety in children with ASD and AS such as general anxiety, separation anxiety, worrying, hypochodriasis, non-situational anxiety or panic. Some individuals with ASD describe these co existing symptoms and others surmise that the lack of understand-ing of their own thoughts leaves them depressed and confused. Temple Grandin describes ToM as a visualizing strength, but others such as Simon Baron-Cohen suggest the inability to put oneself in someone else’s position leads to misunderstandings causing depression and low self-esteem. Appreciating that Children with ASD need to be taught ToM skills naturally found in people with typically developing brains at a very early age is vital. Developing strategies to effectively teach and treat these individuals is a challenge indeed, and an integral piece of our studies at Antioch NE. When one considers the developmental stages of the brain, research supports that both, the earlier, the better, in that early intervention is most effective, but also the theory that the ‘window for change’ in brain function remains open throughout life is supported by numerous cases of brain injury victims being rehabilitate successful.
Cognitive Behavioral Therapy Adapted for ASD treatment.
While exactly how the brain generates empathy remains a subject of intense debate in cognitive science, Cognitive Behavioral Therapy (CBT) treatment programs when successfully modified to fit the needs of individuals on the spectrum have become a powerful tool for intervention. Tony Atwood supports the use of social stories in the final stages of a six week CBT program that he and his college Kate Sofronoff have devised to support individuals and their parents toward a better outcome. Research on the efficacy of CBT is ongoing and seems at first glance to be a concrete model of support for ongoing improvement, especially if parents are included and receive the train-ing to help their child to be come self-supporting.
Celia illustrated the connections between the elements of Cognitive-Behavioral Psychotherapy-:
· Environmental Context.
· Thoughts.
· Feelings.
· Behaviors/Actions.
· Individual Physiology.
The balloon analogy allows us to understand that just as our thoughts, feelings and actions are connected to our individual brain functions, as therapists counselors, helpers and parents our actions in support of an individual with ASD are also connected, and that our opinions, reactions and physiology are viewed within our own percep-tion. Maintaining a subjective and professional approach is a challenge when someone or something tugs at one of our strings. However, with continued adjustments, evaluations, and review, we may continue to rehabilitate the functions of the brain on the surface affecting the overt behaviors without ever fully knowing what the actual functions are. Clinically base analysis, functional assessment, and whole family counseling are just a few of the approaches that studies report as effective, and the continued advances in our use and understanding of technol-ogy, combined with a more accepting society bode well for the future of all with these differences.
Medical Intervention.
A vast area of investigation touched upon during the class is medication, its specific purpose and the overall outcome. I hope to understand more about the overall use of medication for individuals with ASD, and the affects of prescription drug use on brain development, and consider the possibility of specific medical intervention to sup-port development of mirror neurons and other specific brain functions.
Reference:
Nouchine Hadjikhani, Robert M. Joseph, Josh Snyder and Helen Tager-Flusberg Anatomical Differences in the Mirror Neuron System and Social Cognition Network in Autism Cerebral Cortex (2006) 16:1276—1282. doi:10.1093/cercor/bhj069 Advance Access publication November 23, 2005
Kate Sofronoff, Tony Attwood, and Sharon Hinton. (2005) A randomized Controlled trial of a CBT intervention for anxiety in children with Asperser Syndrome. Journal of Child Psychology and Psychiatry 46:11 page 1152-1160.
Kate Sofronoff, Tony Attwood, Sharon Hinton and Irina Levin. (2006) A Randomized Controlled Trial of a Cog-nitive Behavioral Intervention for Anger Management in Children Diagnosed with Asperser Syndrome. Original Paper Springer Science+ business Media LLC 2006
Readiness – the clients’ receptiveness and manage the expectations of the client and their family.A therapist determines developmental, age appropriate treatment, and constantly modifies techniques, shifting focus, and reframing in pursuit of a better understanding of behavior. Therapists carefully consider any diagnosis (Dx) held by the client to achieve an understanding of the brain function, and maintain a rational approach. The Article in Scientific American; “The Teen Brain” illustrates just how the brain changes as it ‘grows’ from child-hood through adolescence and on to adulthood, and as individuals, helpers and therapists we can understand how varied stages of development influence our decision making. The ‘growth’, more accurately depicted as concentration in areas of activity, result in what Jay N. Giedd, a psychiatrist and investigator in the Child Psychology Branch of the National Institute of Mental Health, describes as ‘synaptic pruning’. Pruning is the process where the developing brain eliminates unnecessary connections between neurons, and in return producing a more efficient conduction of nerve impulses. The less effective connections are terminated and more controlling impulses are strengthened, creating the visual appearance of multiple firings of neurons in more concentrated areas. These areas shift as the child brain progresses though adolescence, and becomes adult.
Celia Oliver, PhD, PsyD, shared with the class that she specializes in anxiety, and described what she calls “Celia’s biases”
· “It’s all in the brain.
· What’s working – find the catalyst function in the brain.
· The de-pathology of the disorder.
· All disorders are Neurological.
· Counseling is cool!”
Celia described abnormalities of the limbic system, the Amygdala and the Hippocampus and their role in the individual with ASD connected with socioemotional perception and memory impairments.
Other abnormalities such as Cereballar-frontal system effect impairments in automatic and voluntary special attention abilities, and frontal-striatal pathways cause defective sensory gating resulting in difficulties inhibiting repetitive thoughts, speech and actions.
Picture showing three-dimensional representations of Amygdala and Hippocampus.
The Mirror Neuron System.
Although it is vital to understand all these differences in the function of the brain before building a successful treatment plan or intervention, the advances in medical research and technology in the past few years has given us more knowledge of how our brain works that has been known for centuries. This is an exciting time in the world of neuroscience, and the discovery of the mirror neurons system (MNS) in the Motor cortex in 1996 may hold the key to unlocking Autism. A research group of neuroscientists Giacomo Rizzolatti, Leonard Fogassi and Vittorio Gallese that also included Luciano Fadiga worked together at the University of Parma, Italy. They were probing the brain of a macaque monkey when they discovered a curious cluster of cells in the premotor cortex, an area of the brain responsible for planning movements. The cluster of cells fired when not only the monkey performed an action, but also when the monkey saw the same action performed by someone else. The cells responded the same way whether the monkey reached out to grasp an object, or merely watched as another monkey or a human did. Because the cells reflected the actions that the monkey observed in others, the neuroscientists named them “mirror neurons.” Later experiments confirmed the existence of mirror neurons in humans and revealed that in addition to mirroring actions, the cells reflected sensations and emotions.
The ASD mirror neuron system.
Numerous brain imagining and neuro recording studies indicate a variety of neurological and anatomical (Hadjik-hani, Joseph et al 2006) differences between the brains of those diagnosed with Autism Spectrum Disorder (ASD) or with Asperger’s Syndrome (AS) and Neurotypical (NT) brains. Functional evidence for the presence of MNS in humans comes from several studies using transcranial magnetic stimulation (TMS), electroencephalography (EEG), megnetoencephalography (MEG), and functional magnetic resonance imaging (fMRI) methodologies.
Studies of individuals with ASD have shown malfunctioning MNS in the Inferior Frontal Gyrus (part of the pre-motor cortex) that explains inaccuracy in assessing the intension of others, and may help cognitive scientists understand how theory of mind (ToM) often missing in those with ASD, is developed. Both the imitation and the attribution of mental states involve translating from another person’s perspective into one’s own. In addition, imitation requires a shared representation of perceived and executed action, and there is evidence suggesting that the MNS together with the superior parietal lobule serve this function (Iacoboni and others 1999; Williams and others 2001; Decety and others 2002; Heiser and others 2003; Koski and others 2003; Leslie and others 2004; Buxbaum and others 2005). Several studies have found imitative deficits in autism (Williams and others 2004), including deficits in imitating simple body movements and actions with symbolic meaning (Rogers and Pennington 1991) and in imitating facial expressions of emotion (Hertzig and others 1989; Loveland and others 1994). These deficits are present early in development (Rogers and others 2003). Together, these findings suggest that the basis for imitative and empathic deficits in autism could arise from a dysfunction in the MNS. (Hadjikhani, Joseph et al 2006)
The Mu wave component.
The Scientific American article “ Broken mirrors” describing findings of a studies of the MNS in people with Au-tism, researchers relied upon observation that the firing of neurons in the pre-motor cortex suppresses the Mu wave – a component of the EEG measurement. Mu waves, also known the comb or wicket rhythm, are electromagnetic oscillations in the frequency range of 8-13 Hz and appear in bursts of at 9 - 11 Hz. Mu wave patterns arise from synchronous and coherent electrical activity of large groups of neurons in the human brain. This wave activity appears to be associated with the motor cortex (central scalp), and is diminished with movement or an intent to move, or when others are observed performing actions.
In the Ramachandran Oberman study, ASD brain the Mu waves were not suppressed when the MNS in the pre-motor cortex fired when the subject observed an action. These findings support others that suggest the MNS of children with Autism are deficient.
Discussion -: Mu waves and the perception of reality.
If the Mu wave if not suppressed, could they communicate ‘actual’ rather than ‘observed’ pre motor and motor movements? The individual with ASD may confuse what they see happening to others with what is happening to themselves. If this dysfunction also occurs in other areas of the brain, then it is possibly a reason why children with Autism will avoid using their imagination, and struggle to engage in pretend play. As sleep pattern disruption is common in individuals with ASD, dysfunctional MNS could be associated with fear of dreaming or reluctance to disengage, or relax, or “switch off” in readiness for sleep. When behavioral evidence of the lack of ToM is identified we can also observe the individual with ASD assumes that others around them automatically know what they are thinking, and struggle to grasp that someone else may have a different perspective from that of their own.
Considering all these differences between individual brain functions, it is important when working with children on the spectrum, that we manage our speech (tone, intensity/ volume and pace) facial expression and whole body language communication. The therapist has to find ways to uncover the challenges without further reinforcement of the triggers of behaviors. These individuals when given a structure of understanding can learn to identify for example; what is real, and what is not. What is a threat, and what may be a gesture of friendship. If the MSN fa-cilitate empathy allowing NT individuals to feel the emotions of others, to identify and understand their feelings and motives and see things from their perspective, then the intervention methods we chose differ greatly when working with those who have deficits in these areas. Research shows that in individuals on the spectrum co mor-bidity is common and many studies have found elevated rates of mood disorders and anxiety in children with ASD and AS such as general anxiety, separation anxiety, worrying, hypochodriasis, non-situational anxiety or panic. Some individuals with ASD describe these co existing symptoms and others surmise that the lack of understand-ing of their own thoughts leaves them depressed and confused. Temple Grandin describes ToM as a visualizing strength, but others such as Simon Baron-Cohen suggest the inability to put oneself in someone else’s position leads to misunderstandings causing depression and low self-esteem. Appreciating that Children with ASD need to be taught ToM skills naturally found in people with typically developing brains at a very early age is vital. Developing strategies to effectively teach and treat these individuals is a challenge indeed, and an integral piece of our studies at Antioch NE. When one considers the developmental stages of the brain, research supports that both, the earlier, the better, in that early intervention is most effective, but also the theory that the ‘window for change’ in brain function remains open throughout life is supported by numerous cases of brain injury victims being rehabilitate successful.
Cognitive Behavioral Therapy Adapted for ASD treatment.
While exactly how the brain generates empathy remains a subject of intense debate in cognitive science, Cognitive Behavioral Therapy (CBT) treatment programs when successfully modified to fit the needs of individuals on the spectrum have become a powerful tool for intervention. Tony Atwood supports the use of social stories in the final stages of a six week CBT program that he and his college Kate Sofronoff have devised to support individuals and their parents toward a better outcome. Research on the efficacy of CBT is ongoing and seems at first glance to be a concrete model of support for ongoing improvement, especially if parents are included and receive the train-ing to help their child to be come self-supporting.
Celia illustrated the connections between the elements of Cognitive-Behavioral Psychotherapy-:
· Environmental Context.
· Thoughts.
· Feelings.
· Behaviors/Actions.
· Individual Physiology.
The balloon analogy allows us to understand that just as our thoughts, feelings and actions are connected to our individual brain functions, as therapists counselors, helpers and parents our actions in support of an individual with ASD are also connected, and that our opinions, reactions and physiology are viewed within our own percep-tion. Maintaining a subjective and professional approach is a challenge when someone or something tugs at one of our strings. However, with continued adjustments, evaluations, and review, we may continue to rehabilitate the functions of the brain on the surface affecting the overt behaviors without ever fully knowing what the actual functions are. Clinically base analysis, functional assessment, and whole family counseling are just a few of the approaches that studies report as effective, and the continued advances in our use and understanding of technol-ogy, combined with a more accepting society bode well for the future of all with these differences.
Medical Intervention.
A vast area of investigation touched upon during the class is medication, its specific purpose and the overall outcome. I hope to understand more about the overall use of medication for individuals with ASD, and the affects of prescription drug use on brain development, and consider the possibility of specific medical intervention to sup-port development of mirror neurons and other specific brain functions.
Reference:
Nouchine Hadjikhani, Robert M. Joseph, Josh Snyder and Helen Tager-Flusberg Anatomical Differences in the Mirror Neuron System and Social Cognition Network in Autism Cerebral Cortex (2006) 16:1276—1282. doi:10.1093/cercor/bhj069 Advance Access publication November 23, 2005
Kate Sofronoff, Tony Attwood, and Sharon Hinton. (2005) A randomized Controlled trial of a CBT intervention for anxiety in children with Asperser Syndrome. Journal of Child Psychology and Psychiatry 46:11 page 1152-1160.
Kate Sofronoff, Tony Attwood, Sharon Hinton and Irina Levin. (2006) A Randomized Controlled Trial of a Cog-nitive Behavioral Intervention for Anger Management in Children Diagnosed with Asperser Syndrome. Original Paper Springer Science+ business Media LLC 2006
Thursday, January 11, 2007
ethics in education
There are adequate guidelines and processes in place to guide the professionals through the Special Education Process under The Individuals with Disabilities Education Improvement Act, 2004 (IDEIA) Part B, from first identification from age 3, through providing services, and completing reevaluations and transition at age 21. The building of an effective and ethical Individual Education Plan (IEP) team or Special Education Team is vital to the education of the individual student that the IEP team represents. While the Regular Education and Special Education organizations in the state of New Hampshire are ethical in their interpretation, often implementing standards that exceed those governed by Law, there is often reluctance for individuals with limited understanding of educational organizations, or the special education (sped) system, to approach or examine the process. This may be especially true when the student is joining a new school, or it is the first time that parents and professionals in educations have worked together. The lack of cohesion challenges the team building process and isolates parents from the educational professionals even before first contact is initiated.
Poor implementation or practical interpretation of procedural safeguards can also threaten the well being of the team, and may result in miss understanding, wasted resources, or the advance down a path of due process and litigation.
The cost of disputes whether emotional or fiscal are far too high, often leaving the family and school members exhausted, with detrimental affects on the student’s educational welfare.
However, there have been many law changing outcomes from the sheer perseverance of parents and professionals who act to prevent their rights being undermined, and have the determination and to pursue their case through to settlement.
Therefore, there is a sense of balance needed from all members of the IEP team to ensure the student benefit from their experience, professional conduct and commitment to best practice.
The New Hampshire Department of Education (NH DOE) promotes parent involvement in education of their child as vital to continued improvement of a student, and steps taken to change law through legislation rather than litigation are good.
A saying springs to mind “Never line suits pockets”
With the aim to initiate, improve and further advance the strength of relationships between schools, providers and parents alike, I have set about developing a simple guide that the IEP team members can review, and hopefully agree upon during their first meetings. This should establish expectations, and build trust and respect between all team members. For the parent it should also alleviate some of the concerns and answer some of the questions that arise during the first meeting. The teachers should use a guide such as this to promote parent involvement and underline their professional commitment to the student. Where appropriate the student can also use this guide to gain a better understanding of the sped process. The guide also illustrates the dedication of the team members surrounding the student.
The IEP team members’ code of ethics is based on a code of ethics for professional educators promoted by the Council for Exceptional Children. (CEC). I also referred to New York State’s code of practice for teachers, as I was unable to find one from the NH DOE. The ED.gov site was also a useful source for information relating the IEP process and special education law, but my searches did not yield a code of practice or ethics.
A thought struck me as I researched this subject; it seems that the immense restrictions on spending, and high stake consequences of due process have left little room for ethics.
An Ethical person is someone who does the right thing,
even when no one is watching.
An Ethical team is a group of people, who still do the right thing,
even when everyone is watching.
The brochure was written and designed to be easy to read, eye-catching and focuses the reader’s attention on the student, being at the center. The text featured in the brochure is written below. There are 12 items listed in this code. I found that adding straightforward statements such as point # 11. “The IEP team members view the student in a positive way” greatly increased the readability, and could be easily interpreted.
I propose that such a document is freely available and distributed though local, regional and statewide educational organizations. Representatives for Early Supports and Services (ESS) may chose to include such a guide in the “transition at 3 years” packet, and they may develop something similar for the Individual Family Support Plan (IFSP) to assist parents and professional in providing the best possible services for those families with exceptional children aged 0-3 years.
To support the code, I attempted to identify the individuals required to form the IEP team, using text and graphics shown on the reverse side of the brochure. In the interest of better understanding, I have forsaken the finer details of the law to achieve the lowest reading grade level. (7.7) Considering that much of what is discussed and required during the special education process are identified by law, and that the use of correct legal terminology is important, it is difficult to produce complete information in a simple, short and easy to digest form.
Therefore, I have quoted the Parent Information Center contact information along with a disclaimer statement.
As this entire document is intended to available prior to establishing the IEP team, I added “A quick guide for IEP meetings” to better prepare the non-professional for the first meeting.
The “3 P” principals are worthy at any stage in the sped process and for any meeting, yet sadly they are frequently overlooked by professionals and therefore I chose to include them as part of this ‘ethically minded’ guide.
Code of Ethics for IEP Team Members.
The following Code of Ethics is for parents, educators, specialists and advocates working with exceptional students. The work done by the IEP team also known as The Special Education Team should meet and surpass this code. Members of the IEP team should act with the ideals and values of this code in mind.
1. IEP team members are committed to building the best education and quality of life for exceptional students.
2. IEP team members promote and maintain a high level of knowledge in their area of expertise, or interest.
3. IEP team members choose activities to benefit exceptional students and their families.
4. IEP team members are objective and work together to make skilled judgments.
5. IEP team members work to expand their knowledge and skills re the education of exceptional students.
6. IEP team members work to high standards in their profession or area of interest.
7. IEP team members seek to uphold and where needed, improve the special education laws and regulations.
8. IEP team members respect and help one another, and act in ethical ways.
9. IEP team members take pride in their team and always think about the student’s best interests.
10. IEP team members know who to ask or where to go for advice or help.
11. IEP team members view the student in a positive way.
12. IEP team members know when to ask for an advocate to be allocated.
I would like to allow you refer to the brochure of actual layout.Unfortunately I cannot post it at this time
A Quick Guide for IEP meetings.
Everyone should aim to get the most from the time that you meet so be……...
Prepared—take steps to outline issues you wish to be discussed. Notify all team members ahead of time if you want to add items to the agenda.
Prompt—always be on time, and try to arrive at least 5 minutes before the start time. Call the school administrative staff if you are to be unavoidably delayed.
Present—take detailed notes or bring a recorder (with prior notification), ask questions and summarize following each decision to make sure your attention is maintained and understanding is clear.
The people in the IEP team, also called the Special Education Team, are parents, *guardians or surrogate parent and at least one regular education teacher.
There should be at least one special education teacher, and vocational educators, when pertinent.
Also in the team is someone acting on the behalf of the local education agency (LEA) and a person who can interpret the student’s assessment.
The parent or LEA can ask for the paraprofessional, or the person who works closely with the student, or someone with knowledge or special expertise to be present.
The above was gathered from-: New Hampshire Procedural Safeguards Handbook for Special Education: The Individual Educations Program (IEP) Team/Special Education Team. Page 7, (July 2005), New Hampshire Rules for the Education of Children with Disabilities Ed 1102.28 s300.344 IEP team. Page 9 (EFFECTIVE July 2002)
This Information is not intended for use in isolation. For more complete information about special education laws or the process, please contact the Parent Information Center. (603) 224-7005 info@parentinformationcenter.org www.picnh.org
The most important IEP team member is the student who should be in attendance where appropriate and always be the center of the teams’ focus, to ensure educational growth.
References and resources -:
New Hampshire Department of Education. http://www.ed.state.nh.us/education/index.htm
And the New Hampshire Bureau of Special Education. http://www.ed.state.nh.us/education/doe/organization/instruction/bose.htm
New Hampshire Department of Education
101 Pleasant Street
Concord, NH 03301-3860 Main Number: (603) 271-3494
Fax: (603) 271-1953. TDD Access: Relay NH: 711
New Hampshire Procedural Safeguards Handbook for Special Education: The Individual Educations Program (IEP) Team/Special Educations Team. Page 7, (July 2005)
New Hampshire Rules for the Education of Children with Disabilities Ed 1102.28 s300.344 IEP team. Page 9 (EFFECTIVE July 2002)
The New York State Code of Ethics for Educators (July 2002) Nancy Taylor Baumes Secretary, State Professional Standards and Practices Board for Teaching, New York State Education Department. Office of Teaching Initiatives, Room 5N EB Albany, New York 12234 Phone: (518) 474-4661
Parent Information Center. (603) 224-7005 info@parentinformationcenter.org www.picnh.org
End.
Poor implementation or practical interpretation of procedural safeguards can also threaten the well being of the team, and may result in miss understanding, wasted resources, or the advance down a path of due process and litigation.
The cost of disputes whether emotional or fiscal are far too high, often leaving the family and school members exhausted, with detrimental affects on the student’s educational welfare.
However, there have been many law changing outcomes from the sheer perseverance of parents and professionals who act to prevent their rights being undermined, and have the determination and to pursue their case through to settlement.
Therefore, there is a sense of balance needed from all members of the IEP team to ensure the student benefit from their experience, professional conduct and commitment to best practice.
The New Hampshire Department of Education (NH DOE) promotes parent involvement in education of their child as vital to continued improvement of a student, and steps taken to change law through legislation rather than litigation are good.
A saying springs to mind “Never line suits pockets”
With the aim to initiate, improve and further advance the strength of relationships between schools, providers and parents alike, I have set about developing a simple guide that the IEP team members can review, and hopefully agree upon during their first meetings. This should establish expectations, and build trust and respect between all team members. For the parent it should also alleviate some of the concerns and answer some of the questions that arise during the first meeting. The teachers should use a guide such as this to promote parent involvement and underline their professional commitment to the student. Where appropriate the student can also use this guide to gain a better understanding of the sped process. The guide also illustrates the dedication of the team members surrounding the student.
The IEP team members’ code of ethics is based on a code of ethics for professional educators promoted by the Council for Exceptional Children. (CEC). I also referred to New York State’s code of practice for teachers, as I was unable to find one from the NH DOE. The ED.gov site was also a useful source for information relating the IEP process and special education law, but my searches did not yield a code of practice or ethics.
A thought struck me as I researched this subject; it seems that the immense restrictions on spending, and high stake consequences of due process have left little room for ethics.
An Ethical person is someone who does the right thing,
even when no one is watching.
An Ethical team is a group of people, who still do the right thing,
even when everyone is watching.
The brochure was written and designed to be easy to read, eye-catching and focuses the reader’s attention on the student, being at the center. The text featured in the brochure is written below. There are 12 items listed in this code. I found that adding straightforward statements such as point # 11. “The IEP team members view the student in a positive way” greatly increased the readability, and could be easily interpreted.
I propose that such a document is freely available and distributed though local, regional and statewide educational organizations. Representatives for Early Supports and Services (ESS) may chose to include such a guide in the “transition at 3 years” packet, and they may develop something similar for the Individual Family Support Plan (IFSP) to assist parents and professional in providing the best possible services for those families with exceptional children aged 0-3 years.
To support the code, I attempted to identify the individuals required to form the IEP team, using text and graphics shown on the reverse side of the brochure. In the interest of better understanding, I have forsaken the finer details of the law to achieve the lowest reading grade level. (7.7) Considering that much of what is discussed and required during the special education process are identified by law, and that the use of correct legal terminology is important, it is difficult to produce complete information in a simple, short and easy to digest form.
Therefore, I have quoted the Parent Information Center contact information along with a disclaimer statement.
As this entire document is intended to available prior to establishing the IEP team, I added “A quick guide for IEP meetings” to better prepare the non-professional for the first meeting.
The “3 P” principals are worthy at any stage in the sped process and for any meeting, yet sadly they are frequently overlooked by professionals and therefore I chose to include them as part of this ‘ethically minded’ guide.
Code of Ethics for IEP Team Members.
The following Code of Ethics is for parents, educators, specialists and advocates working with exceptional students. The work done by the IEP team also known as The Special Education Team should meet and surpass this code. Members of the IEP team should act with the ideals and values of this code in mind.
1. IEP team members are committed to building the best education and quality of life for exceptional students.
2. IEP team members promote and maintain a high level of knowledge in their area of expertise, or interest.
3. IEP team members choose activities to benefit exceptional students and their families.
4. IEP team members are objective and work together to make skilled judgments.
5. IEP team members work to expand their knowledge and skills re the education of exceptional students.
6. IEP team members work to high standards in their profession or area of interest.
7. IEP team members seek to uphold and where needed, improve the special education laws and regulations.
8. IEP team members respect and help one another, and act in ethical ways.
9. IEP team members take pride in their team and always think about the student’s best interests.
10. IEP team members know who to ask or where to go for advice or help.
11. IEP team members view the student in a positive way.
12. IEP team members know when to ask for an advocate to be allocated.
I would like to allow you refer to the brochure of actual layout.Unfortunately I cannot post it at this time
A Quick Guide for IEP meetings.
Everyone should aim to get the most from the time that you meet so be……...
Prepared—take steps to outline issues you wish to be discussed. Notify all team members ahead of time if you want to add items to the agenda.
Prompt—always be on time, and try to arrive at least 5 minutes before the start time. Call the school administrative staff if you are to be unavoidably delayed.
Present—take detailed notes or bring a recorder (with prior notification), ask questions and summarize following each decision to make sure your attention is maintained and understanding is clear.
The people in the IEP team, also called the Special Education Team, are parents, *guardians or surrogate parent and at least one regular education teacher.
There should be at least one special education teacher, and vocational educators, when pertinent.
Also in the team is someone acting on the behalf of the local education agency (LEA) and a person who can interpret the student’s assessment.
The parent or LEA can ask for the paraprofessional, or the person who works closely with the student, or someone with knowledge or special expertise to be present.
The above was gathered from-: New Hampshire Procedural Safeguards Handbook for Special Education: The Individual Educations Program (IEP) Team/Special Education Team. Page 7, (July 2005), New Hampshire Rules for the Education of Children with Disabilities Ed 1102.28 s300.344 IEP team. Page 9 (EFFECTIVE July 2002)
This Information is not intended for use in isolation. For more complete information about special education laws or the process, please contact the Parent Information Center. (603) 224-7005 info@parentinformationcenter.org www.picnh.org
The most important IEP team member is the student who should be in attendance where appropriate and always be the center of the teams’ focus, to ensure educational growth.
References and resources -:
New Hampshire Department of Education. http://www.ed.state.nh.us/education/index.htm
And the New Hampshire Bureau of Special Education. http://www.ed.state.nh.us/education/doe/organization/instruction/bose.htm
New Hampshire Department of Education
101 Pleasant Street
Concord, NH 03301-3860 Main Number: (603) 271-3494
Fax: (603) 271-1953. TDD Access: Relay NH: 711
New Hampshire Procedural Safeguards Handbook for Special Education: The Individual Educations Program (IEP) Team/Special Educations Team. Page 7, (July 2005)
New Hampshire Rules for the Education of Children with Disabilities Ed 1102.28 s300.344 IEP team. Page 9 (EFFECTIVE July 2002)
The New York State Code of Ethics for Educators (July 2002) Nancy Taylor Baumes Secretary, State Professional Standards and Practices Board for Teaching, New York State Education Department. Office of Teaching Initiatives, Room 5N EB Albany, New York 12234 Phone: (518) 474-4661
Parent Information Center. (603) 224-7005 info@parentinformationcenter.org www.picnh.org
End.
Monday, January 1, 2007
Final Course Reflections.
Final Course Reflections.
I really don’t like to cook. It’s not that I am rebelling against the traditional role of women chained to the kitchen, or that I lack experience, but simply that I much rather do other things. Like something that I am excellent at.
The reality is that I have challenges in many areas and all of them are involved in cooking…
Reading the recipe - I don’t read well. I struggle with Dyslexia, and see words like ‘tablespoon’ as ‘teaspoon’.
Sequencing – My focus jumps around on a page. Even the following the pictogram on the back of a cake kit challenge me – I see the items on the right before those that appear on the left.
Memory – My short term memory is poor. So when I do something right, I cannot remember what I did that was successful.
Regardless, I have a hungry family, no housekeeper or resident cook, and my husband describes his culinary skills as Visa or MasterCard!
Luckily I am a creative artist and no matter what the cake looked like coming out of the oven, once fully frosted it becomes a treat and the kids are happy.
Much as I have tried, I cannot avoid those activities, which I have yet to master.
What has this to with my studies? Well I’ve been thinking. Studying will do that to you…
I am examining why we are who we are, and what we can do. We all have skills that maybe masked by our particular challenges. Just as I could be a great pastry chef despite my inability to read and follow instructions, with proper instruction, and support we can overcome our difficulties and become something we may never thought possible because we are diagnosed with ‘this' or 'that’
On a recent visit to family in England, we met my nephews for the first time. Two of ‘the boys’ are my brothers’ sons, and the oldest presents classic AS characteristics and is extremely bright, the younger is currently diagnosed with ADHD but he seemed more like my son, generally describe as having Autism as it is more commonly known than his officially diagnosed PDD-NOS Anyway, long story short, my oldest nephew says to his mother “I going to join the Army when I grow up”. His mother replies “You know you cannot do that” and the 8 year old had obviously heard it before. I could only watch as his body slumped and his head dropped, with disappointment or worse, resignation.
I appreciate it’s important for parents and guardians of all children to be realistic and to help a child to understand what his of her diagnosis or abilities may mean for their future, but it makes me question our rights.
As parents we should not use a child’s diagnosis to undermine his or her dreams. We must avoid presenting the ‘disorder' in any negative nuances.
We know so little about the spectrum and how one individual will be affected, and therefore cannot make any assumptions as to what can or cannot be achieved. Surely, the best that any of us can do is to dedicate ourselves to achieving a better understanding of our children and plan for the best outcome for those who will after all be our future.
His mother explains that in England there is such a stigma that being labeled ‘disabled’ would prevent ones from getting a job.
Inside my head I say ‘without recognizing our children’s needs and supporting them now while they are young, they may never be able to hold down a job’
My investigations have found that although standards and services vary from state to state and country to country, raised awareness, improved treatment, and advances in research techniques promises better out comes for those whole lives are touched by Autism, here in the States, and in the UK.
The fears are real for some though. Like the parent who posted on CNN’s Dr Gupta’s Blog had her twins “tested for Autism” and was so obviously relieved as her children did not have the dreaded ‘A’ word. In a article recently published in Stepping Stones NH,
I describe the journey into discovery of my son’s diagnosis “…as an emotional roller coaster that took us from grieving for the loss of a loved-one to the elated joy when a successful intervention made progress.”
Later while standing in the attic, listening to my nephew play the drums, I was amazed. He’s good! I told him that he could do and be what ever he wanted to be – he just needed to want it enough. Easy for me to say – Aunts can get away with making profound and unsupported statements!
Cyclical nightmare.
I think about being a child and growing up in a society that needs to label you. As the world of psychology and medicine learns more about how we are all put together, I can see the diversity of diagnosis developing further, yet however faceted the spectrum becomes, and our understanding and awareness’s improve, there is a part of human nature that is prone to classify, catalog and label. It is when we stereotype an individual that this natural process of understanding breaks down, and falls into discrimination.
In the process of understanding my own sons complex and diverse abilities, and sensitivities, I have realized that we are all one the spectrum. We all have challenges, special needs and yet we all have the right to our dreams, and to believe in ourselves. I am determined not complete the cycle of prejudice or abuse. Our reaction to those unlike ourselves becomes embedded in our children. It is important that we allow their minds to be open to change, tolerant to diversity and practiced at acceptance.
In other postings I have described my own cohort 'penalizing behavior'. It is a rage that erupts overwhelming me in an instant, leaving me with guilt. I have touched on the circumstances of my own childhood, experiencing violence from an early age. I have witnessed the blind senseless rage that rises up in the blink of an eye, it is not curbed by reason or receptive to logic, and there is no escape.
A moment of ‘madness’?
A lapse of suppression?
A programming glitch?
I inherited. The anger passed down to me is violent and I have to suppress its physical manifestation. Although my anger is mostly contained to verbal outbursts I have to work hard not allow the nightmare of parental bullying and abuse to continue into another generation.
Reflecting on what I have learned, I feel better able to identify the weakest links in my own temper escalation. Learning to identify the triggers and break down the components of irrational thoughts and misplaced values that form the foundation of my self-loathing would free me from this cycle of anger. I already have a sense of purpose, and reciprocal activities such as exercise or journaling really help to reduce the episodes. I feel a well-needed sense of achievement while making my way through these studies, and I can use what I learn to help my self, my family and members of my community find our way through our complicated lives.
I first heard of Kathleen Seidel during a Collaborate for Autism meeting last year.
I finally got to hear her speak during Larry Welcowitz ‘s last session of Introduction to Counseling Interventions, but I was not prepared for the shocking similarity between us.
No, I cannot say that over the past few years of my life I have dedicated and channeled all my efforts since the discovery of my sons diagnosis, creating an amazing resource, but that our family circumstances are very similar. In fact, from what Kathleen described, and in the little time we had to chat after the session, I would say that genetically my husbands family, combined with my own, presented stronger traits or as we English say “eccentricities” than the Seidel family. It is great to hear how Kathleen has rationalised all the information surrounding Autism. She investigates the facts and the fiction behind many of the 'urban myths', and proper-gander, and unethical conduct of businesses profiting from families as they try to find a solution their Autism puzzle. It was refreshing to hear how one family can achieve so much.
The Neurodiversity site is vast and after several visits I still have so much to learn from the fascinating women. Bravo Kathleen. Keep on keeping on!
“It’s not what you know, it’s who you know”
I guess that old saying makes for a dismal outlook for those who may know so much but share it with so few.
Later in Larry Welcowitz ‘s last session at Antioch one of Larry’s students Andy Silvia shared with us some of his memories of being at Keene state college, and his involvement in the mentorship program Larry and Linda Baker team had put together with the aid of a Doug Flutie Jr grant.
While they reminisced I was impressed with how Andy used his language. He was engaging, and eloquently on many subjects, apart from one; friendship. He seems to carry out his life as many of us do with few friends, and had little to say on the subject apart from that he was looking for a girlfriend!
For some people; friends are the very reason for life, for others they far less important, but most of us have one or two friends that we speak with, or ‘wine to’ as Larry put in during the last class, and that’ therapy’ is healthy for us.
We live in a society where the number of friends demonstrates ones success, or ones popularity scale. But our perception of individual on this spectrum is often that they are ‘anti-social’ but we need to consider that they may have an equal or more pressing need to make these bonds, but they lack the skills needed to initiate and maintain friendships.
Many individuals have narrow interests, and invest heavily in these finding comfort in the predictable nature of these areas of expertise. Common interests can often be the basis for establishing friendship, but merely having something in common may not be sufficient to overcome many other barriers to a lasting relationship.
Pamela Ely Martins introduced me to the phrase “unexpected behavior” which I applied to my 5 year old son (when he flaps uncontrollably, or suddenly blurts out a phrase from his latest repertoire) as it made better sense than ‘inappropriate’ and I prefer to use it than “penalizing behavior” exemplified by Elsa Abele. Although I know that when others react negatively to my son unexpected behavior it is he that is penalized.
Children and adults on the spectrum seem unlikely to secure friendships with the ‘insiders’ as Larry describes are those people who can individuals with greater social standing, or influence. I imagine the two separate groups; The Insiders and those on the Spectrum, and consider that both are not known for their tolerance, and indeed Larry described how Andy was 'a little hard’ on those students for whom he was a mentor.
Evidence of empathy and tolerance maybe a manifesto of theory of mind, therefore we may have to teach this quality to individuals on and off the Spectrum. Our quality of life is at stake, and true tolerance and a capacity for understanding must prevail over our own prejudiced, and preconceptions.
The long-term effect of growing up.
As I learn more about my son, my daughter and my family, I realize that we are all not just a result of chance. It is not just our specific genetic combination that speaks for who we are and what we can achieve. Our environment determines much of who we are and what we are capable of. I lie wake last night after checking on my children. They wake a little as I tell them “its just Mommy, everything’s all right. I love you very much”.
I cannot remember being told that I was loved as child. Was I ever told? Did other memories mask the reality? My childhood was not filled with love or understanding, more one of rules and responsibilities. As my learning difficulties were discovered, I remember my father blaming it on too much TV. At school I was describes as disruptive and always in trouble, and it was not until I was older as I became aware of why I was so academically challenged. Luckily my artistic skills allowed me to feel that I had talent and could build a career with my art. I do remember my parents being proud of me when I got my first job, but the battles over my career choices are far more memorable. Growing up was a long repetitive series of furious arguments resulting in my leaving home and long periods of not speaking to my family.
Despite these and worse experiences, I have managed to keep my life together.
My youngest brother did not fare so well.
In 2001 he took his own life on the day I was expecting the birth of my son.
My family members each have our own way of coping and it’s so very British to not to discuss, analysis or seek to learn from traumatic events, but I carry the loss still.
I know little of what my brother could not face. There was a rift within our family before his death and we lived separate lives, but perhaps my husband and I received a glimpse of what made my brother feel so isolated when we were trying to figure out what was happening to our son. It’s terrifying to think that our lives are so vulnerable and even though our families may never fully recover, in true British blind determination and ‘stiff-upper lip’ we just carry on.
Somehow, most likely due to meeting my husband “Mac”, I have been able to live happily without the experiences of my violent upbringing overwhelming me. But I realize that the events of my past have affected me, and now, in my forties I am beginning to appreciate how important parental encouragement can be. I wonder how much impact discouragement has.
How do children on the spectrum deal with forever being told they are different, or that they cannot do things like others, and they have ‘deficits’, disorders, syndromes, and disabilities.
Individuals are forced to confront their challenges every day.
“Look at me!”
“Stop that!”
“Why are you doing that?”
“What’s wrong with you?”
These questions or demands may seem harmless, unless they are all someone hears.
While studying Introductions to Counseling Interventions, I have been reading a vast amount of information about those who share a diagnosis of ASD or AS. Research into journal articles and reading posts on Blogs and chat rooms has me thinking a great deal about how individuals on the Autism spectrum may be a vulnerable population. Research shows that in individuals on the spectrum co morbidity is common. Studies have found elevated rates of mood disorders and anxiety in children with High Functioning Autism (HFS) and Asperger’s (AS) such as general anxiety, separation anxiety, worrying, hypochondriasis, non-situational anxiety or panic.
Some individuals with Autism describe these co existing symptoms and others surmise that the lack of understanding of their own thoughts leaves them depressed and confused. Temple Grandin describes Theory of Mind as a visualizing strength, but others such as Simon Baron-Cohen suggest the inability to put oneself in someone else’s position leads to misunderstandings causing depression and low self-esteem.
Stephen Shore will be guiding us through Working with Teens and Adults with ASD has published many books about Autism and bullying. Many children on the spectrum become ‘perfect targets’ for bullying, or are subjects of verbal and/or physical abuse.
Early and intensive treatments may also have a lasting affect on a child’s emotional state. I wonder if the levels of intensive interventions such as 40 hours a week of ABA, clinically proven to support a better outcome for children with Autism have any detrimental effect on the child’s emotional well-being.
As much a symptom of their challenges, or deficits of TOM, and the Sensory Integration issues, low self-esteem seems to be all too common.
Tony Attwood supports the use of social stories in the final stages of a six week Cognitive Behavioral Treatment program that he and his college Kate Sofronoff have devised to support individuals and their parents toward a better outcome
Research on the efficacy of Cognitive Behavior Therapy (CBT) is ongoing and seems at first glance to be a concrete model of support for ongoing improvement, especially if parents are included and receive the training to help they child to be come self-supporting.
Yes, we can overcome so much with the support and visions of just what we can achieve if only we could take the first step. But when every step is painful, not understood, or reflects back the sense of abnormality then it becomes a journey that leaves a trail.
References in additions to those hyper linked within text above-:
A randomized Controlled trial of a CBT intervention for anxiety in children with Asperser Syndrome Kate Sofronoff, Tony Attwood, and Sharon Hinton
A Randomized Controlled Trial of a Cognitive Behavioral Intervention for Anger Management in Children Diagnosed with Asperser Syndrome. Kate Sofronoff, Tony Attwood, Sharon Hinton and Irina Levin Long-term outcomefor children with autism who received early intensive behavioral
treatment. American Journal on Mental Retardation. 97, 359-372. McEachin, J.J., Smith, T., & Lovaas, O.I. (1993)
I really don’t like to cook. It’s not that I am rebelling against the traditional role of women chained to the kitchen, or that I lack experience, but simply that I much rather do other things. Like something that I am excellent at.
The reality is that I have challenges in many areas and all of them are involved in cooking…
Reading the recipe - I don’t read well. I struggle with Dyslexia, and see words like ‘tablespoon’ as ‘teaspoon’.
Sequencing – My focus jumps around on a page. Even the following the pictogram on the back of a cake kit challenge me – I see the items on the right before those that appear on the left.
Memory – My short term memory is poor. So when I do something right, I cannot remember what I did that was successful.
Regardless, I have a hungry family, no housekeeper or resident cook, and my husband describes his culinary skills as Visa or MasterCard!
Luckily I am a creative artist and no matter what the cake looked like coming out of the oven, once fully frosted it becomes a treat and the kids are happy.
Much as I have tried, I cannot avoid those activities, which I have yet to master.
What has this to with my studies? Well I’ve been thinking. Studying will do that to you…
I am examining why we are who we are, and what we can do. We all have skills that maybe masked by our particular challenges. Just as I could be a great pastry chef despite my inability to read and follow instructions, with proper instruction, and support we can overcome our difficulties and become something we may never thought possible because we are diagnosed with ‘this' or 'that’
On a recent visit to family in England, we met my nephews for the first time. Two of ‘the boys’ are my brothers’ sons, and the oldest presents classic AS characteristics and is extremely bright, the younger is currently diagnosed with ADHD but he seemed more like my son, generally describe as having Autism as it is more commonly known than his officially diagnosed PDD-NOS Anyway, long story short, my oldest nephew says to his mother “I going to join the Army when I grow up”. His mother replies “You know you cannot do that” and the 8 year old had obviously heard it before. I could only watch as his body slumped and his head dropped, with disappointment or worse, resignation.
I appreciate it’s important for parents and guardians of all children to be realistic and to help a child to understand what his of her diagnosis or abilities may mean for their future, but it makes me question our rights.
As parents we should not use a child’s diagnosis to undermine his or her dreams. We must avoid presenting the ‘disorder' in any negative nuances.
We know so little about the spectrum and how one individual will be affected, and therefore cannot make any assumptions as to what can or cannot be achieved. Surely, the best that any of us can do is to dedicate ourselves to achieving a better understanding of our children and plan for the best outcome for those who will after all be our future.
His mother explains that in England there is such a stigma that being labeled ‘disabled’ would prevent ones from getting a job.
Inside my head I say ‘without recognizing our children’s needs and supporting them now while they are young, they may never be able to hold down a job’
My investigations have found that although standards and services vary from state to state and country to country, raised awareness, improved treatment, and advances in research techniques promises better out comes for those whole lives are touched by Autism, here in the States, and in the UK.
The fears are real for some though. Like the parent who posted on CNN’s Dr Gupta’s Blog had her twins “tested for Autism” and was so obviously relieved as her children did not have the dreaded ‘A’ word. In a article recently published in Stepping Stones NH,
I describe the journey into discovery of my son’s diagnosis “…as an emotional roller coaster that took us from grieving for the loss of a loved-one to the elated joy when a successful intervention made progress.”
Later while standing in the attic, listening to my nephew play the drums, I was amazed. He’s good! I told him that he could do and be what ever he wanted to be – he just needed to want it enough. Easy for me to say – Aunts can get away with making profound and unsupported statements!
Cyclical nightmare.
I think about being a child and growing up in a society that needs to label you. As the world of psychology and medicine learns more about how we are all put together, I can see the diversity of diagnosis developing further, yet however faceted the spectrum becomes, and our understanding and awareness’s improve, there is a part of human nature that is prone to classify, catalog and label. It is when we stereotype an individual that this natural process of understanding breaks down, and falls into discrimination.
In the process of understanding my own sons complex and diverse abilities, and sensitivities, I have realized that we are all one the spectrum. We all have challenges, special needs and yet we all have the right to our dreams, and to believe in ourselves. I am determined not complete the cycle of prejudice or abuse. Our reaction to those unlike ourselves becomes embedded in our children. It is important that we allow their minds to be open to change, tolerant to diversity and practiced at acceptance.
In other postings I have described my own cohort 'penalizing behavior'. It is a rage that erupts overwhelming me in an instant, leaving me with guilt. I have touched on the circumstances of my own childhood, experiencing violence from an early age. I have witnessed the blind senseless rage that rises up in the blink of an eye, it is not curbed by reason or receptive to logic, and there is no escape.
A moment of ‘madness’?
A lapse of suppression?
A programming glitch?
I inherited. The anger passed down to me is violent and I have to suppress its physical manifestation. Although my anger is mostly contained to verbal outbursts I have to work hard not allow the nightmare of parental bullying and abuse to continue into another generation.
Reflecting on what I have learned, I feel better able to identify the weakest links in my own temper escalation. Learning to identify the triggers and break down the components of irrational thoughts and misplaced values that form the foundation of my self-loathing would free me from this cycle of anger. I already have a sense of purpose, and reciprocal activities such as exercise or journaling really help to reduce the episodes. I feel a well-needed sense of achievement while making my way through these studies, and I can use what I learn to help my self, my family and members of my community find our way through our complicated lives.
I first heard of Kathleen Seidel during a Collaborate for Autism meeting last year.
I finally got to hear her speak during Larry Welcowitz ‘s last session of Introduction to Counseling Interventions, but I was not prepared for the shocking similarity between us.
No, I cannot say that over the past few years of my life I have dedicated and channeled all my efforts since the discovery of my sons diagnosis, creating an amazing resource, but that our family circumstances are very similar. In fact, from what Kathleen described, and in the little time we had to chat after the session, I would say that genetically my husbands family, combined with my own, presented stronger traits or as we English say “eccentricities” than the Seidel family. It is great to hear how Kathleen has rationalised all the information surrounding Autism. She investigates the facts and the fiction behind many of the 'urban myths', and proper-gander, and unethical conduct of businesses profiting from families as they try to find a solution their Autism puzzle. It was refreshing to hear how one family can achieve so much.
The Neurodiversity site is vast and after several visits I still have so much to learn from the fascinating women. Bravo Kathleen. Keep on keeping on!
“It’s not what you know, it’s who you know”
I guess that old saying makes for a dismal outlook for those who may know so much but share it with so few.
Later in Larry Welcowitz ‘s last session at Antioch one of Larry’s students Andy Silvia shared with us some of his memories of being at Keene state college, and his involvement in the mentorship program Larry and Linda Baker team had put together with the aid of a Doug Flutie Jr grant.
While they reminisced I was impressed with how Andy used his language. He was engaging, and eloquently on many subjects, apart from one; friendship. He seems to carry out his life as many of us do with few friends, and had little to say on the subject apart from that he was looking for a girlfriend!
For some people; friends are the very reason for life, for others they far less important, but most of us have one or two friends that we speak with, or ‘wine to’ as Larry put in during the last class, and that’ therapy’ is healthy for us.
We live in a society where the number of friends demonstrates ones success, or ones popularity scale. But our perception of individual on this spectrum is often that they are ‘anti-social’ but we need to consider that they may have an equal or more pressing need to make these bonds, but they lack the skills needed to initiate and maintain friendships.
Many individuals have narrow interests, and invest heavily in these finding comfort in the predictable nature of these areas of expertise. Common interests can often be the basis for establishing friendship, but merely having something in common may not be sufficient to overcome many other barriers to a lasting relationship.
Pamela Ely Martins introduced me to the phrase “unexpected behavior” which I applied to my 5 year old son (when he flaps uncontrollably, or suddenly blurts out a phrase from his latest repertoire) as it made better sense than ‘inappropriate’ and I prefer to use it than “penalizing behavior” exemplified by Elsa Abele. Although I know that when others react negatively to my son unexpected behavior it is he that is penalized.
Children and adults on the spectrum seem unlikely to secure friendships with the ‘insiders’ as Larry describes are those people who can individuals with greater social standing, or influence. I imagine the two separate groups; The Insiders and those on the Spectrum, and consider that both are not known for their tolerance, and indeed Larry described how Andy was 'a little hard’ on those students for whom he was a mentor.
Evidence of empathy and tolerance maybe a manifesto of theory of mind, therefore we may have to teach this quality to individuals on and off the Spectrum. Our quality of life is at stake, and true tolerance and a capacity for understanding must prevail over our own prejudiced, and preconceptions.
The long-term effect of growing up.
As I learn more about my son, my daughter and my family, I realize that we are all not just a result of chance. It is not just our specific genetic combination that speaks for who we are and what we can achieve. Our environment determines much of who we are and what we are capable of. I lie wake last night after checking on my children. They wake a little as I tell them “its just Mommy, everything’s all right. I love you very much”.
I cannot remember being told that I was loved as child. Was I ever told? Did other memories mask the reality? My childhood was not filled with love or understanding, more one of rules and responsibilities. As my learning difficulties were discovered, I remember my father blaming it on too much TV. At school I was describes as disruptive and always in trouble, and it was not until I was older as I became aware of why I was so academically challenged. Luckily my artistic skills allowed me to feel that I had talent and could build a career with my art. I do remember my parents being proud of me when I got my first job, but the battles over my career choices are far more memorable. Growing up was a long repetitive series of furious arguments resulting in my leaving home and long periods of not speaking to my family.
Despite these and worse experiences, I have managed to keep my life together.
My youngest brother did not fare so well.
In 2001 he took his own life on the day I was expecting the birth of my son.
My family members each have our own way of coping and it’s so very British to not to discuss, analysis or seek to learn from traumatic events, but I carry the loss still.
I know little of what my brother could not face. There was a rift within our family before his death and we lived separate lives, but perhaps my husband and I received a glimpse of what made my brother feel so isolated when we were trying to figure out what was happening to our son. It’s terrifying to think that our lives are so vulnerable and even though our families may never fully recover, in true British blind determination and ‘stiff-upper lip’ we just carry on.
Somehow, most likely due to meeting my husband “Mac”, I have been able to live happily without the experiences of my violent upbringing overwhelming me. But I realize that the events of my past have affected me, and now, in my forties I am beginning to appreciate how important parental encouragement can be. I wonder how much impact discouragement has.
How do children on the spectrum deal with forever being told they are different, or that they cannot do things like others, and they have ‘deficits’, disorders, syndromes, and disabilities.
Individuals are forced to confront their challenges every day.
“Look at me!”
“Stop that!”
“Why are you doing that?”
“What’s wrong with you?”
These questions or demands may seem harmless, unless they are all someone hears.
While studying Introductions to Counseling Interventions, I have been reading a vast amount of information about those who share a diagnosis of ASD or AS. Research into journal articles and reading posts on Blogs and chat rooms has me thinking a great deal about how individuals on the Autism spectrum may be a vulnerable population. Research shows that in individuals on the spectrum co morbidity is common. Studies have found elevated rates of mood disorders and anxiety in children with High Functioning Autism (HFS) and Asperger’s (AS) such as general anxiety, separation anxiety, worrying, hypochondriasis, non-situational anxiety or panic.
Some individuals with Autism describe these co existing symptoms and others surmise that the lack of understanding of their own thoughts leaves them depressed and confused. Temple Grandin describes Theory of Mind as a visualizing strength, but others such as Simon Baron-Cohen suggest the inability to put oneself in someone else’s position leads to misunderstandings causing depression and low self-esteem.
Stephen Shore will be guiding us through Working with Teens and Adults with ASD has published many books about Autism and bullying. Many children on the spectrum become ‘perfect targets’ for bullying, or are subjects of verbal and/or physical abuse.
Early and intensive treatments may also have a lasting affect on a child’s emotional state. I wonder if the levels of intensive interventions such as 40 hours a week of ABA, clinically proven to support a better outcome for children with Autism have any detrimental effect on the child’s emotional well-being.
As much a symptom of their challenges, or deficits of TOM, and the Sensory Integration issues, low self-esteem seems to be all too common.
Tony Attwood supports the use of social stories in the final stages of a six week Cognitive Behavioral Treatment program that he and his college Kate Sofronoff have devised to support individuals and their parents toward a better outcome
Research on the efficacy of Cognitive Behavior Therapy (CBT) is ongoing and seems at first glance to be a concrete model of support for ongoing improvement, especially if parents are included and receive the training to help they child to be come self-supporting.
Yes, we can overcome so much with the support and visions of just what we can achieve if only we could take the first step. But when every step is painful, not understood, or reflects back the sense of abnormality then it becomes a journey that leaves a trail.
References in additions to those hyper linked within text above-:
A randomized Controlled trial of a CBT intervention for anxiety in children with Asperser Syndrome Kate Sofronoff, Tony Attwood, and Sharon Hinton
A Randomized Controlled Trial of a Cognitive Behavioral Intervention for Anger Management in Children Diagnosed with Asperser Syndrome. Kate Sofronoff, Tony Attwood, Sharon Hinton and Irina Levin Long-term outcomefor children with autism who received early intensive behavioral
treatment. American Journal on Mental Retardation. 97, 359-372. McEachin, J.J., Smith, T., & Lovaas, O.I. (1993)
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