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)