Posted on October 12, 2015
I have spent days feeling upset and un-moored after reading a blog post that was reproduced by Kidspot on Friday about a family who relinquished their autistic child. It has now, thankfully been removed. It used the real names of the five year old child and his family, as well as identifying photos. After concerns were raised, first the names were changed, then photos removed or blurred.
I think that the mother who wrote this article, blaming her child’s autism for wrecking her life, her health and nearly her marriage is a woman seriously on edge and in need of a lot of help and support. I hope that she gets it. She has lived with chronic illness for some time, and relentless sleep deprivation takes away your resilience, among other things. I know that last bit from experience. I wish her peace and healing. I see that her heart is broken, and I do not doubt that she loves her son deeply.
That doesn’t mean that what she wrote was ok. I can’t judge her actions. I am not her, our lives and experiences are not the same. However, her representation of autism was negative and demeaning to her child. She started out by saying that her son was ‘born perfect’. And then along came autism. She implored readers to “Hold your neurotypical children closer tonight,” as though her own child was dead. But her son isn’t dead, he just has autism. Never mind holding your neurotypical children closer (and thanking your lucky stars that they don’t have autism), mamas of autistic babes, you hold your precious children closer tonight, because so many people out there believe that their existence must be a terrible fate, for them and for you.
For every experience of autism that is portrayed as a horror story, another school principal at a special school will think that is ok to secretly build a cage. For every person who thinks, “It would be different if it was a normal child, but he wasn’t, he was a low functioning autistic” (an actual comment on Kidspot), some more teachers build a box with padlocks on and get autistic kids to draw on it. Every time hundreds of people comment on how terrible this situation was for the parents, autistic lives are devalued again, and the grim truth is that when that happens, sometimes autistic children are murdered by their parents. In those circumstances, just like in the Kidspot article, the public usually rally around the parents because somehow it was the child’s autism that was responsible for their own murder. This attitude was alluded to again and again in the comments section on Kidspot.
A group of autistic advocates called Autism Family Collective felt similarly to me and petitioned for the article to be removed. You can read their letter to Kidspot here. I don’t know whether it was their letter and petition which was responsible for getting the article removed, or whether the QLD adoption and foster care agencies had something to do with it (I hope they had something to say about it). I hope that the publication of the article using real names and photos had no negative impact on the little boys possible adoption. I guess we will never know, because it’s not our business to know. It never was.
Some of you may say that there is a big difference between the ends of the autism spectrum. Of course that is true, that’s why there is a spectrum. You might think that the symptoms of that particular child were intolerable for the parents, but the truth is that we need to speak loudest for those who cannot speak for themselves. We don’t get to say that that child’s existence is worth less than any other child, on the spectrum or otherwise, because of the particular manifestations of his autism. We don’t get to assume that he doesn’t need love, like five year olds do.
As for my child, as for Boodi, well, he’s not “high functioning”. When his ADOS assessment arrives I suspect that it will label him as “low functioning”, though I will pay scant attention to that, because I know better than to place any worth on such fluid terms. Unlike the mother who wrote that article, I love my childs autism. Boodi and his autism are one and the same. He didn’t devalue after his diagnosis, it simply illuminated for us who he was.
He draws and paints gorgeous pictures. His smile is like a hundred rays of light. You probably wouldn’t understand the words of his singing if you were here, but we know him, so we know that the words that he is singing (among lots of songs) are “Let’s be brave!” from Thomas, or “Life is but a dream” from Row, Row Row your Boat. There are so many wonderful things that he is and that he does. He is so precious. I have no idea what his future holds, but I do know that to be a valuable human being, all that he has to do is to be himself, and by being his awesomely autistic self, just like the five year old boy who now lives somewhere else, he is absolutely perfect.
If you want to inform yourself about autism and autistic people, you may want to read Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity