Epidemic Silence: Under-diagnosis and the Insult of Autism

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.

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15 Responses to Epidemic Silence: Under-diagnosis and the Insult of Autism

  1. This question comes up so often and I always think it would be better to talk about it. In my own case I was looking for answers and being consistently told “don’t worry – she’s fine!” including by our pediatrician. How I wish that someone could have pointed me in the right direction sooner. We went a full 3 years from my initial concerns to a diagnosis. Three years(!) of struggling to understand my daughter’s behavior and language needs. I did what I could for her in that time, but how much better for our whole family if we could have had professional intervention in that period – our lost years. While I don’t think one should approach an absolute stranger, talking to a friend/employer about what you see happening with their child – in a careful compassionate manner – in my opinion is an act of true friendship.

  2. nostromo says:

    Bastards!! I’m going on there now to give them what for

  3. mrsstone says:

    I am a big believer of the ‘tell them’ camp.

    I didn’t have this issue as Harri was my third child, and I knew very early something was causing him to be so unsettled. The ‘don’t tell them’ camp are operating from ignorance, and who can blame them? I knew nothing about the importance of early diagnosis and intervention until after my sons. I don’t think it stems so much from a fear of autism, as much as a fear of upsetting people. GP’s do it all the time. So do paediatricians. It’s also prevalent in child abuse cases, domestic violence and a range of other issues. People just don’t want to get involved as they feel ‘out of their depth’, confused and like it is none of their business. They fear losing friendships, employment or connection with family members. After all, most of us are not trained or skilled in dealing with such complex emotional matters.

    Still sucks though.

    • Fair comment mrsstone, and I absolutely take your point.

      I’d say what is needed is a shift in culture, towards seeking help if in doubt, and towards always putting the child first. I know this is complicated by not just things like parental attitudes, but also by the operation of organisations which are in place to deal with “problematic” children; such as a sometimes-presumption that the parent must be abusing the child, so the parent stays quiet out of fear of being targeted by over-active government agencies (for instance).

      In NZ we have shockingly bad child abuse statistics, the attitude of “don’t say anything” is quite deeply entrenched (particularly in some cultural groups it would seem) and the government has been looking into how to turn that around. What methods they will use to achieve this aren’t known yet, but I suspect it will be more intervention, even when it is unwanted, which will perhaps further entrench the “keep quiet for the sake of the family unit” idea. What is required then I suppose is a less judgamental and more help-oriented system, rather than a heavy-handed approach that further victimises the family and the child. Yet there’s the public sentiment that govt agencies aren’t heavy-handed enough when they find evidence of abuse, in terms of removing and saving the child. It will be interesting to see and reflect on what the government comes up with as their solution-package.

      I’m going to share a story that I think nicely captures your concerns and the problems around commenting on others’ parenting, and how hard it is to know what to do and how to do it. It’s about (what I consider to be) child abuse, that I witnessed and tried to stop when I was at university about a decade ago:

      I had gone to the bathroom. There was a woman and her young child there, the girl was about 3 or 4 years old. The mother was shouting at the girl to wash her hands (she’d just been to the toilet), but the girl couldn’t reach the tap, even on tiptoes and leaning right against the sink. The mother just kept shouting at her to do it, then stormed out of the bathroom telling the girl she was not to come out until she’d washed her hands. The girl stood in the corner of the bathroom, crying and shaking, absolutely terrified. I went up to her (I was the only other person in the bathroom), and asked her if she wanted my help to wash her hands. She nodded. I lifted her up and helped her wash her hands. Then I helped her open the bathroom door (which was rather hard for a child her age too) and gently encouraged her outside to where her mother was waiting with some adult friends. The mother asked her daughter if she’d washed her hands, the daughter nodded, and the mother started shouting at her that she was a liar and to go back and do it. She grabbed the child and dragged her back into the bathroom. I was mortified, but felt utterly helpless. I wanted to confront the mother but she was clearly quite enraged and her friends were standing doing nothing. I stood there for a while not sure what to do, until finally running back to a friend nearby in an office to ask his advice (he was much older than I, and I considered him quite wise). I ended up shaking, in tears, conveying what I’d seen, asking what I was meant to do, desperately wanting to help the child but not knowing how, and feeling horrible for not doing more. Which is all to say, even when we now what we see is clearly wrong, I understand that actually doing something about it – knowing what to say and to who – can be horribly difficult.

      Having said that, when someone is family or a carer of the child I believe there is a very strong duty to interfer and speak up; they know more history of the child and the family, and at least know the identity of the people involved.

      • mrsstone says:

        I have found myself in situations similar to the one you mention. My sense of outrage overwhelms me every time and I say something in the moment to the parent because I can’t stop myself. I have come close to being physically assaulted in during these times but fortunately have managed to make my point clear that the behaviour is unacceptable and then get myself out of the situation. That response comes naturally to me, but I understand why it does not to most. There are risks.
        I agree totally with you that it is the right thing to do, to speak up when there are concerns about children.
        (BTW it’s me shazza, my wordpress account is mixed up 🙂

      • Yes, I recgonised you!

        I feel that I would have spoken up back then if I was who I am today; a parent, and someone with a lot more confidence and world experience. The fact that I didn’t at the time still upsets me, and I do still wonder what became of that child, with a parent like that. If she thought it was acceptable to treat her child like that in public, what was happening in private…

  4. mattyangel says:

    I think this is what happened with my parents… people were to afraid to tell them and my parents also did not want to hear or believe that I could be different to any other child. I wish people put up more of a fuss.

  5. MJ says:

    I hear what you are saying but…

    It isn’t that telling a parent that their child might have autism is an insult but rather that it is like navigating a mine field. You have to be extremely careful with each and every step or the end result won’t be pretty.

    If you don’t know the parent extremely well or don’t have a good relationship with them then it is likely they will just dismiss your concerns. Or, if you put it the wrong way, you could end up predisposing them against the idea that their child has issues. At worst they will completely break all ties with you.

    Parents can be extremely touchy when someone suggests that their young children aren’t developing properly. I know I was.

    Most of the time it seems to be a better idea to just drop a couple of subtle hints and leave it at that. If the parent has existing concerns then they might take the opportunity to talk about it or it might prod them into taking action. Or maybe it will make them more receptive when other people suggest something similar in the future.

    • nostromo says:

      Respectfully I would disagree. You are dishonouring the child by taking that approach. If telling the parents what I think if I have genuine and founded concerns means they don’t like me – then too bad. If they want to stick their head in the sand, then that’s their mistake not mine, they should be concerned foremost about their child.

      And conversely from what you suggest, my own experience as a parent of a child with Autism who was placated by all and sundry that nothing was wrong, is that I still bear resentment towards those people. We wasted time. The only person who I have respect for was the hospital audiologist who said he was very worried about my sons development after testing my son for hearing issues (no problem there) and gave me names and numbers of people we should see to get him assessed as soon as we could “don’t waste time in the public system”. We need more people like him telling it how it really is, and less mealy mouthed pandering to parents precious feelings.

      Its about the child is it not?

      • MJ says:

        I am not suggesting that you placate the parents and tell them nothing is wrong – quite the opposite in fact. If another parent asked me, based on my experiences with my own children, if I thought there was a problem with their child I would give them my honest opinion.

        But that is not the same as volunteering an unsolicited opinion or telling someone else something that they might not be ready to hear. I feel that there are times when it is best to just give a couple of gentle nudges in the right direction.

        To give you an example, back when we first were starting to have doubts about our twin daughters development, we had a close friend of the family who had decades worth of professional experience working with children with disabilities come look at them. She stopped over, gave them a standardized test, and told us that we needed to take them somewhere for an evaluation.

        At about the same time, the twin’s pediatrician did the same thing. At one of the routine appointments she suggested that we take them for an evaluation because she had some concerns. It turns out this doctor also had children of her own with autism so she certainly knew exactly what it looked like.

        Both of these people knew exactly what autism looked like and were pretty sure what was going on but neither of them said “autism”. Instead they both pushed us in the right direction and let us (somewhat) gradually accept what was going on. They also left the diagnosing to someone who was qualified to do so.

        And in reality, letting us find out more slowly did absolutely no harm to the children. You can’t access services in my area without a professional diagnosis and getting a the professional evaluation would have taken the same amount of time regardless of whether they used the autism word.

        I think our experience was a kinder one than having a semi-stranger walk up to us and drop the A bomb. I know that I was more willing to hear what the professional at the evaluation had to say knowing that two other people also had concerns.

        After the diagnosis, both of these people were still there and were able to help point us in the right direction of what we should be doing next. And getting that extra help in the beginning was a huge bonus for the twins.

        If either of this people had dropped the A bomb on us we might not have been as willing to listen to them so quickly after the diagnosis. But instead of “tell us how it really” was and risk alienating us, they instead took a more relaxed approach and ensured that they would be in a position to help after the diagnosis.

        But who knows, maybe your experiences have been completely different than ours.

      • I think we all agree that someone should say something, but the disagreement is over how?

        I tend towards the view that parents who take it personally or get upset when someone points out something might be wrong with their child, perhaps need to “harden up” and get some perspective; it isn’t a personal insult, it is someone showing concern. The appropriate response is surely, “thanks for your concern”, not a break-down in the friendship between those adults..?

        Having said that, I think there is an important difference between showing concern and judging. This comes back to the way the concern is shared: Shared in a judgamental, confrontational manner that puts that parent on the defensive because they’re facing what feels like an accusation; or shared in a general concern that perhaps a professional should see the child.

        As for the A bomb, I’m in two minds about that. I agree that lay-people shouldn’t be throwing around diagnoses of other people’s children – that a professional should always get involved – but I do think there are times when it’s important to alert the parent to what you think the problem might be, to help them identify which professional they should speak to and to perhaps start them on their own research to see if they also see other matching features that then convince them as parents that there is something there worth persuing. I suspected my son had autism because of little bits of information I’d picked up from the media (though I can’t precisely recall where and how I first made the connection between my son and the condiiton) and then researched further to discover the scary number of classic features my son exhibited of autism, which gave me the confidence to walk into a doctor’s office and raise my concerns more precisely than I would have otherwise been able. So by the time the professional gave us the confirmed diagnosis, I wasn’t surprised per se (but I was gradually scared witless as the truth sunk in).

        Even though I’d suspected autism, I let the professionals lead the way and rule everything else out; I can imagine some parents might become doggedly determined to get a particular diagnosis, or fight against a particular diagnosis, and I suppose those are also reasons to not suggest a particular diagnosis title to a parent before the professionals do. I suppose that’s a matter of individual personality of the parent…? It’s not something I’ve particularly thought about before, but the extended discussion in these comments have got me wondering about how vital that point might be for some people.

  6. Tyler says:

    I am very happy I was not diagnosed at a young age. labeled and isolated my parents both sad scared and convinced I would simply be a huge headache and amount to nothing, no thanks. Two year olds don’t need to be “diagnosed” with mental problems. I have traveled many places had many jobs both volunteer and paid and done and seen many things, and I doubt I would have if I grew up in the bubble of what people think being Autistic means. If everyone around you expects you to be a perpetual child how can you be any different

    • Tyler, maybe it wasn’t possible to diagnose you at such a young age because it wasn’t severe enough in you; in children like my own son, it was necessary and a blessing, because it was obvious that something was very wrong but until we had the diagnosis we didn’t know how to help him.

      The diagnosis was the start of a journey that has been of immeasurable benefit to my son. Your notion that all parents will enter – and more importantly, remain – in some sort of horrendous state, is simply unfounded. Also, you really must take into account that with severely affected children on the spectrum, it’s not “the diagnosis” that rules how they react to their child, it’s the very reality of the child themself; the immense challenges that come with our children exist quite independently of the diagnosis, but without the diagnosis we are not well equipped or well supported (or well funded) to cope with those realities.

      Autism is not a “mental problem”, you surely understand that. I don’t know why you would dismiss autism in this way when you have the condition yourself. It is so much more than that. Trivialising it and its realities does no one any favours.

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