Partner keeps saying our child may be on the spectrum

[ariacoops]

We’ve got a DS who is six, my partner and his family have over the past year started remarking how they believe he is on the spectrum- without really elaborating what that means. They have some knowledge of this in the family, one is an OT and there is a social worker, DH works in charities. I know that sometimes parents can be in denial so I’ve tried to interrogate it in myself but I spend the most time one on one with him and I just don’t see it. He’s very happy, doing very well at school, his teachers have never mentioned anything, he has loads of friends, meeting all his milestones. He gets into arguments with his little brother and has to be told to share a lot - which seems to be the root of why they think he is neurodiverse. But to me coming from a big family it just seems pretty normal. At school he is never in trouble, he enjoys sports and Pokemon which they say is an obsessive interest but to be honest it just seems like something he likes. The other thing they say is he seems to have sensory issues around food - he doesn’t much like mushy stuff but is happy to eg have things on his plate mixed. He’s pretty adventurous with food and eats green veg and sauce etc. He’s vocally affectionate and very cuddly and likes holding hands - my SIL thinks this is strange and potentially also a sign of neurodiversity but she has never been one for hugs herself. And the final thing they say is he is very literal, he gets upset easily if there are any jokes at his expense or sarcasm. But he does like making jokes himself, he loves reading a joke book, and this has been improving ad he gets older. I just think tbh he’s still really little but am I missing something? None of this affecting him in day to day life or at school so what is the point of trying to diagnose him? Any other parents recognise anything here?

It sounds like you're thinking of autism as "something wrong." It's not wrong, just different. I don't think there's any harm in getting him assessed and then there's certain things you and the school can do to just make sure that life isn't unnecessarily hard for him as he gets older.

My friend's little boy (5) is going through diagnosis now and he's the loveliest, happiest little boy and SO clever- his special interests are vehicles (especially trains and barges), and things related to those like canal locks and level crossings and he knows everything about them. He sits and writes books about them.

DD (a month older) is possibly ADHD but probably not autistic and to be honest he surpasses her in most areas.

The biggest difference I noticed with him from young is that all children have imaginary world and DD wants to bring people INTO that world and to engage people and incorporate their ideas into that world. He is very happy in his own imaginary world and does not feel any need to invite anyone else in. If they insert themselves he will tolerate them but continue with his own plan.

I once watched him carefully explain level crossings using sticks and drawing in a sandpit to DD (both 4 at the time) completely oblivious to the fact that she'd stopped listening and was trying to find an exit from the situation for a good 10 minutes. 😂

What's the point of saying it? What was even the point of your comment to me other than to be mean/snarky for the sake of it? Confirms the response is warranted imo

You recommended that a good response to a family member querying whether a child in the family could be autistic would be a furious rant at them about them accusing your child of having an "incurable defect" and autistic children being "defective".

Can you not see how people might find that a totally inappropriate response and that language quite disgusting?

You totally misunderstood the point of saying that. It is disgusting to view another human being in that way

Can you explain the point you were trying to make? Why would a family member mentioning that a child has traits that could be associated with ASD warrant flying off the handle?

If support and therapy with a proven record of helping patients is available this makes a lot of sense. But in the case of a child who is mostly coping at school and who’s symptoms are limited to struggling with emotional regulation, needing to engage in fairly inobtrusive stimming, and is preferring to use noise cancelling headphones in some circumstances there may not be any such proven therapies. That child’s developmental trajectory may be toward reduced difficulty or increased need; there are no good predictive criteria. So is it better to diagnose that child, who may then experience stigma or be misunderstood in harmful ways by those who know he is autistic but have a reductive and stereotype-based understanding of autism, whilst receiving no measurable benefit from his diagnosis? Or in that case would waiting and watching be preferable? I don’t have answers to these questions at all, but I have this nagging feeling that we might need to consider them.

Oh I HATE the “let’s not diagnose people because of stigma” argument! It’s self perpetuating! I think the best thing to tackle stigma around ASD is for people to be out there in the world leading happy productive lives with an ASD diagnosis, which happens if more people feel empowered to seek diagnosis, not fewer.

Well, it’s not just ‘let’s not diagnose because of stigma’. It’s ‘will the behaviour of a vulnerable 6 year old be misinterpreted in ways that lead to mismanagement and distress because of assumptions associated with a diagnosis that brings her no additional support’? And is there a risk that a young person with a diagnosis reads about symptoms of her condition that previously she has not considered troubling but now focuses on to the extent that they become distressing and obstructive to living a satisfying life? Suzanne O’Sullivan’s book The Age of Diagnosis is really interesting on the potential for harm of this kind in relatively borderline diagnoses in people for whom the diagnosis brings no proven medical pathway to improvement. I take your point about the way past stigma being to see a lot of people with diagnoses living happy and productive lives but it is not the job of a child to carry a diagnosis that may bring harms and no actual help in the hope that it may one day benefit the community at large.

I’ve not read her book but I’ve listened to her on a podcast and she made me positively angry and I thought some of the examples she used to support her argument are absurd. Normally I’m quite open to different points of view but I found her infuriating.

I think there is a much bigger risk of an undiagnosed person being judged through an NT lens and found lacking (either by other people or your own image of yourself) than there is of a person being diagnosed and find it a limiting prophecy.

I have my own experience of trying to ‘fit the mould’ and failing, and of DS being diagnosed and being able to parent him much better with the insight we have got from diagnosis. That there may be no “medical pathway” for us doesn’t feel relevant - it’s just brought understanding and compassion that has been enormously helpful.

That’s an interesting perspective. A lot of what she said resonated with me. We do know that people can manifest symptoms as a result simply of knowing about them and that young people especially are vulnerable to suggestion and social contagion. I think that is something to be considered alongside your view (which is currently dominant) at least until we have a better way of determining which people would benefit from diagnosis and which patients would not. Otherwise aren’t we just conducting an uncontrolled experiment on vulnerable young people? I also speak to some extent from experience. My child is suspected to be autistic by his school. There have been several occasions on which he has acted out after a particular TA, who is a self-proclaimed autism diagnosis crusader, has intervened in disputes with other children with the preconceived idea that my child’s actions are the problem and that they are the result of specific autistic traits. She has stated as much. His own version of events is often very different, and some of his distress is caused by the unfairness of being assumed to be in the wrong and frustration that she will not accept his own account of his motivations, and the fact that the other child’s behaviour goes unchecked. My child is socially awkward and does likely need a little more support than most children, although this is partly because he is an August born boy.
I am also troubled by the idea that for people to be treated with compassion and understanding they need a medicalised passport to acceptance. That doesn’t feel accepting or tolerant to me. That said, plenty of arguments in favour of diagnosis on this thread have been thought provoking and persuasive. I’m genuinely torn.

So you have family members who are an Occupational therapist and another who is a social worker suggesting that your child is ND? I’ve worked in SEN special schools and have known hundreds of ND kids and young adults. Given my experience, I can usually tell if a person I’m speaking to is neurodiverse or not, particularly children. I’m sure it’s the same with your family members… they will have come into contact with plenty of ND people to make it easy to spot in your child.