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Sunday, July 12, 2015

Autism, Shame & Society: An insider’s view

The Star-flower Cactus-by Stephanie Tihanyi
(all copyright held by the artist)

Autism, Shame & Society: An insider’s view

Published July 21st 2015 in the St. Maarten newspaper The Daily Herald
 When I was a young teen, a close relative’s child died, leaving behind young sibling, who had just been diagnosed with autism. I remember my father saying, “It was sad, but it was sadder, the wrong one died”. He probably did not mean it, but the time I thought it was cruel and I sensed the shame. I did not know, I too was on the autism spectrum.  This toxic shame permeates society, negatively impacting on the lives of autistic parents, children and adults, in ways far worse than their difference ever could. In an enlightened society, it shouldn’t be that way, but it is. It is through societal attitudes, those of us who are ADHD, dyslexic, or autistic, grow up, learning to feel shame for who we are. Society has perpetuated a culture of fear, shame, and pity around difference, often making it more of a disability than it needs to be. I believe this shame is intentionally and unintentionally manufactured, often by those who profess to care and that discrimination, against the differently abled, is becoming the major cause of injustice and civil rights issues of our time.

I always knew my brain worked very differently, I never knew why. Far from being devastating, being diagnosed was a relief that gave me validation for my experiences. It helped me understand and accept myself enabling me to re-frame my life, in a new positive way. It helped me forgive myself for being ‘stupid’, for being terribly bullied (at home and at school), for being misunderstood, for always struggling to fit in. It answered questions why being social, was always such a mystery and such hard work. It helped me finally come to terms with a lifetime self-blame and low self-esteem. Like many girls on the spectrum, I craved friends but had few or none. I tended to hang on the edge of groups, in order to learn the group’s social behaviors by observation and copying. I learnt to disguise my lack of social skills by being invisible. Like many kids in today’s ‘special education’, I struggled in school, except for art, but art had little merit in school. At 11, I was labeled as ‘a child having below average capabilities’ and was put in the ‘slow-class’ after being bullied. Then one day, I stunned everybody by creating a huge 200 page folder of pressed wild flowers, in my summer holidays, I collected, identified, pressed, catalogued and labeled them with their common and scientific Latin names. People on the spectrum are an odd mixture of strengths and deficits like that. Back then, the ‘slow class’ didn’t mean you got special education or extra support, it meant they left you on your own. I finished school with no qualifications.

 From my teens to my late 20,s, I had such terrible social anxiety and depression. Many jobs, were beyond my ability to cope, because of sensory issues, even talking to others was difficult. Most of my jobs when I wasn't unemployed were in cleaning and washing-up. I had to practice over and over in my head sentences, just to be able to ask for a packet of cigarettes in a store or a bag of fruit at the grocers. It was so hard to get the right words out or intonation in the right order, together with the right body language, without looking totally weird, frightening people or irritating them. I memorized scripts for everything.  Many people on the spectrum do in time develop, abet atypically and later in life.  I eventually got better at engaging with people and even taught myself many subjects I had missed in school, like writing, but art remained my one special passion that I never had to work at. Looking back, I never imagined I would be the person I am now, capable of doing what I do now.

Following my diagnosis, I read a lot, I also talked with other autistic people, read their books, articles, research and blogs. I found a common experience and was stunned by a profound dissonance between how autistic people viewed themselves, their lives and how the rest of society views them, which was shockingly judgmental, negative, inaccurate and unjust.  Right from the start, from the time someone came up with the word ‘autism’ or ‘Asperger’s’, the condition has been judged from the outside, and not from the inside, not as from how it has been experienced. No one really knows autism is, but most in the medical field believe it’s a disorder caused by genetic defects or environmental harm, either way it’s a disease to be cured, that the value of talents attributed to autism, does not outweigh the deficits, and that autistic people and society would be better off if they were not autistic. They see it only in its diagnostic terms, and purely through a deficit model. They use negative words like 'suffers',' disorder', ‘disease’; they make lists of 'symptoms'. Most all their research comes from child studies, even today, adults are an un-researched mystery. The exclusion of adult autistic voices from the process of knowledge production is ethically and epistemologically problematic and has resulted in a horrendous lack of ethics. I see, that society allows the use of stigmatizing and fear-provoking language, to raise money for genetic research for a cure for child autism or even elimination by pre-natal testing

Emotive words are used in 'awareness campaigns like, ‘horror of autism’, ‘epidemic’, 'devastating' describing autistic children as ‘lepers’, ‘lost’, ‘empty’, soulless’ and ‘tragic’,  accumulated in the now infamous, 2009 Autism Speaks video, aimed at drawing funds from big corporate sponsors, shows a small child looking at the camera and a dead zombie-like voice saying:

“I am autism. I have no interest in right or wrong.  I work faster than pediatric AIDS, cancer, and diabetes combined, I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the video campaign.

These so called ‘charities’, repel all protests and attempts by autistic adults to have any say or voice in policy in their organizations and it’s not hard to see why. This negative and false definition of autism that shapes society’s attitudes of autistics in the 21st century, as ‘scary’, ‘sick’ or tragic’, is being driven by big business at the expense and wellbeing of innocent autistic people and their families. In 2011 of over $314 million that was raised, only 3% went into services support and education and only 1% went into adult services and the rest into genetic research labs.  The biomed movement is no better in its unchecked abuse of ethics in pursuit of funding and the selling of 'cures', many unproven and untested.

The point I make is, the unethical, negative portraying of autistic people, has been successful as a business marketing strategy.  Some of the most extreme Anti-vaccine and anti GMO-crusaders are accused of upping the ante. I have seen the most awful fear-mongering language, shock and awe tactics from this quarter. It’s from this sense of injustice and autistic identification,  I am drawn to defend the wrongful portrayal of all people, who are neuro-diverse. The only way I can do that is to stand up, and speak out, loud and clear.  In the last decade more and more adults from all across the autistic spectrum, across the globe, from all walks of life, scientists, parents, teachers, writers, lawyers, are organizing to advocate for theirs and others human and civil rights. By borrowing lessons from the Black civil rights movement, they are advocating against abuse and discrimination. Best known group is TPGA (Thinking Person’s Guide to Autism) and ASAN (Autistic Self Advocacy Network), both are online.  These are people who see themselves, not a disorder, not broken or inferior, but as a variant within the normal neurological diversity, of the human genome. Their struggles, they attribute to psychological stresses of discrimination, intolerance of their differences, lack of supports and the constant perpetuation of negative myths and stereotyping.   
Sometime ago, I wrote a piece in this paper, trying to correct the many of the myths about people with autism and Asperger’s I had read in it. The false myths of the lack of empathy, lack of conscience, or lack feelings etc are wrong. Recently someone wrote about people with Asperger’s having terrible relationships, of being unimaginative and uncreative. Many people with Asperger’s marry; have children and have long happy relationships, why? Because like everyone else who falls in love, we pick and choose our mates, because they have a combination of positive traits, that are similar to or complement our own. Unimaginative?, uncreative?, I will leave that up to you. . I did not write this as a pity piece, but to inspire others to stand up. To tell them its ok to not let others, who don’t know them, define who they are. So you see the shame of autism, does not come from being autistic, it comes 100% from society. Incidentally, that younger autistic relative went on to university, to major in mathematics and speaks 5 languages.

By coming out, I take that shame and I am giving it back, it never really belonged to me, I don’t need it. Finally at last I can accept myself and like who I am. I will leave you with these words by Wired reporter Steve Silberman, author of 'Neurotribes", who wrote in his book ‘The Forgotten History of Autism: ‘We are still trying to catch up to Hans Asperger, who believed that the cure for the most disabling aspects of autism, is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children’s potential.

Stephanie Tihanyi