Parents seeking to better the lives of their autistic children must overcome many obstacles including prejudice and ignorance of those who blame them for their children's behaviour. Bettleheim's twisted theories no longer prevail, at least not openly. But as a lawyer I have advocated for families whose parenting skills in raising their autistic children are questioned by family service and child welfare bureaucrats with no real experience or knowledge of autism or what it means to raise an autistic child. In the everyday world some strangers will still look on disapprovingly when your child engages in public tantrum or other "odd" behaviour.
A further obstacle arises from those who should know better, the few parents of autistic children and some high functioning autistic adults, who glorify autism; presenting it as a positive even superior aspect of the human condition. These "posautive", or "neurodiversity" advocates react with outrage when other parents try to present the whole truth about autism. They reacted angrily, and shamefully, when parents in the Autism Every Day video told their stories. These brave and caring parents were accused of staging scenes for the video and mocked as engaged in self pity parties. All because they told the world the truth about their children’s autism.
Parents do not need self appointed internet autism experts from afar to tell them to find joy in their children. Nor do we need them to falsely tell the world that autism is all joy and wonder. It is not. Autism is a serious neurological disorder and the realities of life for autistic persons, particularly severely autistic persons, and their families can be hard. Parent advocates do not need sympathy or pity from the "posautive" crowd. Nor do we need their support. What would help is if they ceased creating a false picture of the reality of autism - as experienced by many autistic persons and their families.
The photos above portray the joy of living with my severely autistic son Conor, age 11 - a quiet moment with Nanny, some roughhousing fun time with Dad. But the third picture is that of a window broken by Conor this past Friday, broken with his hand as he rushed from one end of the house to the other. He cut his hand, though not seriously. The window was replaced (with car windshield type glass). But the fact remains that he could have hurt himself badly. And the fact remains that danger and injury are ever present realities that have to be contemplated much more frequently with our autistic son then with his brother who is not autistic. And it does become expensive repairing and replacing. My son's life experiences and prospects are not the same as the high functioning internet essay writers. His will be a life being cared for by others. After I am deceased I will not be able to fight for him or otherwise ensure that his best interests are respected. Conor is a joy, a great and tremendous joy, to our family. That is why we fight for his best interests now against immovable bureaucracies and against the false pictures of autism painted by internet autism glorifiers who do my son no favours with their false pictures.
I think the pictures really illustrate the point. It's difficult, perhaps even impossible, to convey the truth of living with autism to someone who hasn't experienced it. Indeed, even those who deal with less severe parts of the spectrum have a difficult time understanding what those on the other end experience. Why? The pictures say it all. There is both the joy and broken windows... and I think people have a hard time understanding how the two co-exist.
ReplyDeleteHi, thank you for this post. I don't have time to read often, but just chanced upon your blog today. Keep up the good work you do. So glad your son was not seriously injured. Sincerely, Diane
ReplyDeleteI am a mother of a 3.5 yr old boy suspected for autism and a new member of the neurodiversity camp. I have much respect for you and I am sad to see so much confrontation between people who I think could find a common language. In particular, while I think you have the right to attack "normal" parents of autistics as sharply as you like, the "high-functioning essay writers" are a different case. Though high-functioning, they have their difficulties and only they know how they feel inside. My impression is that the claim of some of them to be superior is the result of repeated abuse by "normal" people and their institutions. I am also sure that if these individuals knew some way to help a lower-functioning autistic become a high-functioning one, they wouldn't keep it to themselves but reveal it. It is not their fault that they don't know this; neither do scientists, for now.
ReplyDeleteMy introduction to neurodiversity was through Frank Klein's site, which included the story of an autistic young man becoming antisocial and suicidal (http://home.att.net/~ascaris1/shane.html) - hardly a dishonest "advertisement" of autism. I am not for glorifying autism, but I think some more positive presentation of it is necessary as a counterweight to the very negative view presented by most "official" sources. This doom-and-gloom picture leads to narrowing the normal range, so that many high-functioning mildly autistic children who 30 years ago would live happily undiagnosed and develop near-normally, now are subjected to treatments causing more harm than good. It can also make parents lose all hope in their child (which will not help the child develop his potential), become depressed, resort to quackery "treatments" or leave their child in an institution. Once, staying at a hospital, I met a woman who was about to miscarry after hearing the autism diagnosis of her 5-yr-old son confirmed. Now I am thinking this boy wasn't very severely affected, otherwise the mother couldn't stay in ambiguity for 5 years, no matter how much she wanted to fool herself.
You know Conor loves you. What would you say about the numerous non-posautive sites insisting that autistic children "have no empathy"? I wish professionals to be more careful when writing texts for public use.
Sorry for the long comment.