Take That Crutch and Shove It
Autism and Intolerance
In 2019, in an enlightened first world society that in recent years has begun to learn to take a very self-examining look at itself, one could be forgiven for believing that we are beyond petty intolerances and prejudices when it comes to conditions as relatively mainstream as autism. But have we? Has the prejudice gone or has it, like white supremacy, simply changed clothes and put on a new face?
‘You’re using your/your kids/your spouses autism as a crutch! Stop blaming everything on their autism!’ I don’t think there’s any one of us who hasn’t heard some variation of that line during their time as an autistic/autism parent. When autism first entered the Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM III) as a distinct and separate condition in 1980, it was almost unheard of. For many years it had been considered a form of childhood schizophrenia and was a barely diagnosed footnote. When it was redefined in 1987 and finally recognized as a spectrum in 1994, awareness rose. Several movies were made with savant characters (Rain Man (1988), Mercury Rising (1998), The Innocent (1994) among others) and public awareness of the condition began to rise.
With increased awareness came a whole slew of misinformation, misunderstandings and ignorance
which produced a great deal of prejudice. When I was diagnosed with aspergers syndrome in 1995, it wasn’t understood at all by the general public. Their impressions had already been informed by savant movies and that’s how they saw autism. Trying to explain aspergers syndrome and its quirks to someone who believed all autistics were barely functional savants was nigh impossible. That disconnect and that lack of understanding produced a great deal of prejudice and intolerance towards anyone on the higher end of the spectrum and an almost apathetic belief that nothing could really be done to help low functioning autistics.
Many higher functioning autistics spent a great deal of the 80’s and 90’s accused of using their condition to justify ‘dickish’ behavior, to excuse ticks and social misunderstandings. Many low functioning autistics, with parents utterly devoid of support or therapeutic options spent years in developmental disability units, in psychiatric wards and in nursing homes, ignored and forgotten.
Fortunately, the turn of the millennium saw a surge in movies dealing with autism and autistic characters, from 2009’s Adam, which portrays the struggles of a man with aspergers to 1999’s Molly dealing with a non-verbal autistic who undergoes a dramatic experimental therapy. Television too saw our first autistic characters, from Boston Legals Jerry Espenson to Eureka’s Kevin Blake and the British show Skins, which introduced an accessible autistic character to British teens in its JJ Jones. This, combined with activism, documentaries, enhanced training for doctors, nurses, school teachers, bus drivers and corporate officers has brought some normalization and acceptance to autism in our society. It became understood that quirks and ticks and meltdowns weren’t something to be mocked or feared, but simply another facet of a very complex personality. As society becomes more accepting and understanding of autism as a condition to live with and the redesigned diagnostic and therapeutic criteria become more refined and tailored to specific subsets and types of autism, the more obvious intolerance and prejudice is, generally speaking, leaving the public realm.
Unfortunately, there has been a rise in another type of prejudice, other types of intolerance and misunderstanding. More insidious, more passive aggressive and less obvious. Is there any autistic parent that hasn’t experienced the quiet withdrawal of ‘friends and family’ after diagnosis as we travel down the rabbit hole of research and understanding? The gradual reduction in invitations, play dates, school involvement and outings. This is one of the most hurtful kinds of intolerance, the withdrawal of support systems, particularly among family members who refuse to babysit, who refuse to let their children play with our children, as though somehow autism were contagious. The reality of becoming a social pariah as all the while platitudes and obsequious excuses are thrust down our throats.
Beyond that is the worst prejudice that we unintentionally lay amongst ourselves. As we face more and more quiet separation from our support systems, autistic parents naturally turn to help groups, and what better place than social media platforms like Facebook to find likeminded individuals. Here we discover a more unique and destructive form of unintentional prejudice. It comes in many forms, but can essentially be summed up with ‘my child is more autistic than yours, so my experience is more valid and my life more worthy of pity’. Seemingly harmless emoji-laden comments on posts that draw the narrative away from the posters child and towards the commentor. Dramatic and frequent retellings of recent episodes with replies that only focus on comments offering heartfelt sympathy. Occasionally even open hostility as uncertain and newer members are left bewildered by the acronyms and abbreviations used when discussing autism. People express feeling or experiences about one form of autism and are sometimes put down and made to feel small and foolish for expressing themselves because other parents have not experienced the same type of problem. High functioning parents who cannot empathize with a violent non-verbal meltdown resulting in injury to self and others over something as simple as food choice. Low functioning parents who envy the tales told by high functioning of the social anxiety their child has expressed, who cannot empathize but find themselves resentful that such communication is possible.
This whataboutism is not uncommon with other chronic mental health conditions and is not necessarily the fault or even conscious intention of the perpetrator, but it invalidates the experiences of others, makes them feel less worthy or somehow fraudulent for needing to vent or express their fears, anger, anxiety and frustration.
Gone are the days that we would so openly be subjected to accusations of ‘crutch’ and ‘excuse’, but instead rises the whataboutist and the quiet separatism. Help and advocacy groups exist to provide a support mechanism and a united bond among those dealing with these serious and often frustrating conditions. We must all take a little more time and consider whether what we say is actually in the best interests of the people we are talking to, trying to help, or possibly an invalidation of them to salve our own needs for validation.
Every parent, whether of high or low functioning, verbal or non-verbal, ODD or ADHD or any of the other myriad complicating factors needs to stand together and validate and appreciate the experience of others. We need to take a little more time and recognize our own prejudices, particularly when we are sure we do not have any. Only by truly coming together as a united family can we continue to support one another.