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.
Thursday, May 24, 2007
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
Subscribe to:
Posts (Atom)
