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
Nada and I loved your piece about autism and your son, Boodi. We were both moved to tears as we read and thought about your personal journey through life. You write so well and express your thoughts and feelings with honesty, love and depth.
Love and hugs,
Tony & Nada.
What a lovely surprise, Tony and Nada. Thank you so much for reading and for feeling it.
Love
Dani x
Beautiful post and perspective, as always. I really feel for that family. I hope their son is thriving in care and that they get some much needed help. I hope the system can support them and other families much better in future.
Thanks Amy. More support for families would be great. Something that she mentions on her blog after the death of Perth toddler Sammy Trott in December is that we need more “village” help in raising our children. I feel as though I have that in place, but not everyone does, and I don’t think that she did.
Beautiful words for your son. Love everything you said, especially “The truth is that we need to speak loudest for those who cannot speak for themselves.” – that sums it all up. xx
Thank you Deb. It is so true about needing to speak for our most vulnerable. Also, even Temple Grandin, the brilliant grandmother of autistics was non verbal as a small child. We must never assume that non-verbal autistics are empty shells, which the article also gave the impression of. That’s the kind of awareness that I want to spread. xx
Beautiful hon xx
I honestly cannot believe 1. That names and photos were published. And 2. The attitude toward children labeling them “Normal” or not. It reaks of attitudes towards kids born with Down syndrome up until recently. Written off or looked down upon get as burdens etc Now we are (supposedly) a more enlightened generation and children are recognised as the individuals they are with their own gifts and light to shine, purpose in our lives and ways they change the world around them. And yet here we are still with the same attitudes, stigmas and judgements being kept alive. Keep writing and sharing yours and Boodi’s stories. That is the way of change I guess xxx
Deb, it is so hard to believe isn’t it! Like no one thought that might be totally unethical. On the original blog post those identifying details remain, which is why I haven’t linked to it.
No one seemed to question the way that she blamed her child for everything. I still shudder to think of some particular lines from the post x
Thank you for speaking so eloquently on behalf of the children and families dealing with autism. I missed that Kidspot article but am so happy to see that many people rallied to protect the identity of that child and to have that article removed. And based on those comments it is clear that there is still so much prejudice and ignorance around this issue – voices like yours are so crucial to raising awareness.
Thanks Melissa. I think really that I just never want my child to ever read something like that, to ever question whether he was a burden instead of a joy to us and the world. Beyond that published post, her blog is brimming with open hatred for autism. How will her child feel if he ever reads it? X
By the sounds of it, I am glad I missed the article.
It was a disturbing, sad article.
I didn’t read that article on Kidspot, because I just didn’t want to, to be honest. I’m glad now. I don’t have autistic children, and I have no idea how hard it must be to have them. But I do see how loved they are by their parents, and I know that all children are precious, regardless of any kind of diagnosis. I wish everyone valued all children equally.
That’s the very essence of it right there, Jess, all children are precious x
Danni – your Boodi is lucky to have you as his Mum and it is so obvious how lucky you feel to be his Mum. From what you say it is such a sad story on Kidspot and the comments sound so horribly negative towards autism. I really feel they made a big mistake in not protecting this child’s identity – it is almost as though they didn’t care because he’s autistic as though he has no rights. Shocking.
It was such a sad story, and quite unbelievable that no-one thought that it might be wrong to protect the identity of the child. I also totally understand why there was so much sympathy for the mum, but no-one seemed to question the blame that was landed squarely on the 5 year olds shoulders (or on his autism, but it is my opinion that you can’t divide the 2, and especially with severe autism). I don’t want Boodi growing up thinking that his autism is a terrible thing.
This is such a beautiful post Dani. I must admit I have not read or heard about the original article you are referring to and it does sound like the mum was at her wits end. I don’t have children but I do assess kids with ASD and work with those who have comorbid mental health problems. I do think there aren’t enough services out there to support parents who need help. Not in terms of therapy for their kids but for themselves. If there were more respite services, at least some parents could get a bit of a break than having to give away their kids because they have ASD or some form of disability.
Your son is lucky to have you as his mum :)
Thanks Sanch :) We feel pretty lucky having Boodi as a son.
More respite for families is a big issue, and it does rather feel as though this family fell through the cracks, red flags should have been raised to say that they were reaching a stress point from which they couldn’t return. I also feel that surely temporary foster care could have been a solution? I think a situation in which a counsellor/psychologist says one hour into the first session “I know you love him, but he’s killing you”, snowballs into a decision to relinquish a 5 year old forever is, well heartbreaking. I’m forgetting that you haven’t read the article, sorry. If you are interested in reading it, I can PM you the name of the mother’s blog, where it is still up, identifying details and all. Anyway, I hope that they are all better off for it, I just don’t want anyone to see it as anything other than a very extreme scenario.
I didn’t see the original article so it is hard to go too deep into commenting. I think perhaps there is good to come out of a story like this as sad as it is in that the child is removed from a home that isn’t going to love them as fully as they deserve.
As a parent of a very hyperactive child that still doesn’t sleep through the night and requires at least 1 – 2 hours of settling every night I can understand how the sleep deprivation could push someone over the edge, and while I don’t defend the mother’s words or actions my heart breaks that they didn’t get the help the so clearly needed.
I absolutely agree, the level of severe sleep deprivation that the whole family have suffered for years would be enough to send anyone over the edge. I have been reading back over her blog from years ago and she wasn’t always this way at all, it truly is heartbreaking that they were all let down so badly. I hope that they can all recover.
I did’t see the article, but I do know one thing – All children are precious. Everybody has something special to offer to the world. Everybody. I hope this family gets some support, but most of all I hope that gorgeous child feels limitless love and safety.
Thanks for making me aware!
I do hope that he feels limitless love and security. I hope that all of that family can go on from this. I doubt that she realises how negative her language about autism sounded to other mums of autistic children, but she sounds so worn down that it would be difficult to keep your judgement steady.
I didn’t see the article and I’m pretty relieved about that. I think you nailed it when you said ‘the truth is that we need to speak loudest for those who cannot speak for themselves.” High five to you for raising awareness and reminding us that all children are perfect, and how perfection comes in so many different ways.
Thanks Sam. I feel as though this article was like an arrow direct to my heart and that it consolidated my need to be a strong advocate for my child and for autistic children in general.