My son has autism. This is a fact, not an insult. And yet…
Today I was reading a new forum discussion on a local website. The original poster was a carer of a two-year-old child. She was asking for advice on what she should say – if anything – to the parents of the child she cares for. The behaviour she was worried about is pretty-much textbook autism, including no eye-contact, lack of social involvement (with adults or children), complete lack of speech (despite good hearing), no exhibited emotions. Perhaps worst of all, the two year old is self-harming, and again, showing none of the expected emotional response (such as pain, despite the actions clearly causing physical damage).
The response from the many commenters?: Say nothing, it will offend the parents if you point out problems with the child; Say nothing, it will look like you’ve been hurting the child yourself and have come up with an elaborate excuse about the child doing it themself; Say nothing, my child was probably autistic but they’ve grown out of it “90%” and are now almost normal. One person thought the self-harm was evidence of the child having been abused, and therefore you should say nothing to the parents… but you might want to document it and get the authorities involved.
As I read the responses I literally felt my breath taken away. Shouldn’t these people be encouraging this observant and caring carer to speak to the parents about the concerns? To talk openly and honestly; not to keep quiet because finding out there’s “something wrong” with the child might make the parents feel bad? Or is this notion that finding out a child needs help is a bad thing, so deeply entrenched in my society, that the responders are right to fear a harsh instead of appreciate reaction from the parents? Even so, say something! And yes, I said this to the original poster in a comment; I told her to speak directly and openly to the parents, and that if I’d been the parent, I would have thanked her for her concern, even if I didn’t share it.
I saw some of this “shut up and then the problem doesn’t exist” going on around my own son’s diagnosis. Extended family rubbishing our concerns, telling us our son will turn out “normal.” Friends and family saying I was paranoid, my son just needed more outings and social engagement (without bothering to ask first the efforts I was already making to achieve just that, with only negative outcomes for my son who had severe anxiety attacks). Just close your eyes, and wait. And wait. And if your child doesn’t come right then it must be your parenting that is at fault; god forbid we ever point out concerns about the child, or advise someone to seek professional advice, even to rule something out. Just shhhh, and reality will change…
Since the diagnosis I have encountered many situations and stories where parents weren’t told about carers’ concerns, because the carers or other family members didn’t want to insult the parents. I have had concerned friends ask me in hushed voices about whether they should say anything about behaviour that is making them worried for some else’s child’s wellbeing.
If only other people had spoken out about my son, sharing and openly hearing my concerns, I know – I know – I would have had more confidence about getting the earlier diagnosis for my son. He would have been easy to diagnosis a good year prior to the point at which he finally was (three-years-old); instead I held off, listening to the people calling me an overly-concerned first-time parent, and assuring me he’d be just fine. By three years old he was so obviously not-fine that my and his life had become a living hell. An earlier diagnosis and earlier intervention would have made the world of difference in our lives. When we finally began the interventions, they did make a serious difference, but it took a lot of time to work and was so much harder – for everyone – than it would have been if we’d started earlier. If I’d figured it out earlier. If someone had just said “hey, why don’t you see a professional just to rule it out…”, instead of telling me that parents who did such a thing were attention-seekers buying into the modern popular labels to excuse bad and lazy parenting.
And so I’m not surprised about the under-diagnosis going on: That studies which look beyond diagnosed populations, consistently find undiagnosed autistic children. (I also believe there is over-diagnosis and misdiagnosis going on, to what extent I wouldn’t venture to say. You can still perfectly coherently and importantly say there is under-diagnosis going on in the face of those other phenomena; there is no particular surprise that all these things can and do happen for a symptom-defined and broad and stigmatised condition, like autism.)
Carers, family, parents, need to hear that it is not an insult to think or say that a child might have autism. It is a potential fact, to be investigated and determined either way. Perhaps the child doesn’t have autism; perhaps they are “fine”, or perhaps they have some other condition that needs special help. But without pursuing the truth – instead closing our eyes and encouraging others to do the same – the child may be missing out on vital services, the parents may be missing out on vital support. This silence, reflects and encourages a society that views my son – and his autism – as something to be ashamed of. The only shame I feel is being part of a society that thinks not-causing parents offense, is more important than speaking out for a child who can’t speak out for themself.