AIBU to wonder whether an autism diagnosis is always that helpful in milder cases?

[NCdoesexistno]

Posting in AIBU for traffic. I know there are lots of discussions about general over-diagnosis of autism on mumsnet, but I'm wondering about the actual usefulness of a diagnosis for families (we're working out some issues in our family right now).

I completely understand that for many families, getting an autism diagnosis can be a huge relief, explaining behaviours, unlocking support, and help everyone understand their child better.

But it's diagnosed through a description of behaviours that are often very disparate (i.e. two children with the same diagnosis could present with entirely different signs). In those much milder cases, where autism is more of a catch-all for a cluster of behaviours, is the label always that useful?

I know these children still face challenges they’ll need to navigate and mitigate, and of course they deserve understanding and support. I just find myself questioning whether the diagnosis itself makes a material difference, or whether it can sometimes muddy the waters. For example, if a child is not sleeping, fussy about food, hugely emotional dysregulated, or having meltdowns, then even after a diagnosis of autism, they are still going to need to employ strategies to grow up to eventually sleep, eat, and navigate society (and if they don't, they'll still have the same problems, even if they/their parents can say 'oh - it's because they're autistic'). And these strategies can surely be employed without the diagnosis.

I can see that it might help parents to feel less guilty, or more understanding of their child, but given that EHCPs aren't going to be doled out here, what benefits does it bring? And in fact, in a few cases, I wonder if it might risk 1) creating a narrative about the child that they may start to imitate or feel boxed in by, and/or 2) stop parents from reflecting more deeply on their own behaviours, boundaries and expectations.

I genuinely wonder whether the private assessment industry is just a racket now. Backed up by the fact that it's statistically overwhelmingly wealthy, white, middle-class families doing this. I'm not talking about the very clear cases of autism.

I'm aware that many people will find this rude because (if this is indeed the case - I genuinely have no idea, that's why I'm asking the question) they are part of the group who like having a reason for their kids' behaviours. So that's not really a control group.

I'm looking for non-emotive answers as we try to navigate a family situation. So the 'Don't be so dismissive - our son didn't like vegetables and was having tantrums every night and hitting his brother. Now I know he is autistic, he might still be doing those things but I know why, so it must be true' doesn't help me. For context, we are looking to make a decision in our family about this.

YABU - Even in mild cases, there are material benefits attached to getting it labelled (in which case, what are these?)
YANBU - Lots of us have random neurodivergent traits that we have to navigte, and the culture of diagnosis and needing a catch-all 'reason' for everything has gone too far and isn't always helpful.

There is no ‘mild’. This really pisses me off. You don’t just rock up, answer a few questions and get a diagnosis 🙄 It’s a very lengthy in-depth process. If you don’t meet the criteria, you don’t get a diagnosis. My dd is what they class as ‘high functioning/aspergers’ … high functioning basically means she’s very academic, has no learning disability. This is what you, OP, would call ‘mild’. However, her high functioning/mild autism means she goes mute and can’t communicate with others (including medical professionals), she can’t go into a shop and ask for help/directions/stock, she can’t socialise so has no friends at all, she finds leaving the house so overwhelming that she either doesn’t do it or needs to rest or sleep for hours afterwards, she doesn’t enjoy Christmas or birthdays as she’s stressed and anxious about things being different/unsure of how to accept gifts, she can’t eat her limited foods if they’re presented ‘wrong’ or have touched each other, she ‘hurts’ when showering … is this mild OP? Outwardly, she just looks shy. But she has all this going on .. and that’s just for starters. No autism is mild - I wish others would understand that.

It's a wind-up thread, this is the reaction they want.

If your child wouldn't get a diagnosis through the NHS the likelihood is they are not autistic, or am I missing something here? Why have you made this post?

Hi op. I have an 8 year old son on a waiting list for diagnosis. Aside from school pushing for it and telling me it's what I need to do for him anyway, I think for me it's about equipping my child with knowledge about himself and I believe a diagnosis will be better in the long run for his mental health, as he will be able to understand himself more.

I was diagnosed as an adult in my early 40s. It was life-changing in terms of how it allowed me to re-cast many many experiences from my earlier life and realise that it was not just me failing in lots of cases, but that I was working twice as hard to play by the social rules others understand implicitly and that it would periodically burn me out and I'd muck it up. It gave me the power to forgive younger me and my mindset changed from a previous view that I screwed everything up all the time and was never going to succeed (I'd never held a job down for more than a year cos I didn't fit in socially), to a "you've worked fucking hard and you're doing so well, these are the bits that you find hardest and this is why" - and I've since found a career I do really really well in.

I also am able to advocate for myself much better - I can explain to colleagues, "look I know I can be a bit full on and steamroller into things - please just tell me to calm it down, I'll look baffled and hurt and then I'll do it - but it'll be better than if I go home and replay the day in horror" - and my colleagues do this when required. I also know that my sense of just and unjust can be a bit extreme and I'll grab friends for a sense check before digging myself into arguments and burning bridges.

Before the diagnosis I thought I was just a crap person, unlikable, unemployable and generally shit. Now I understand I'm working hard to stay afloat in a world that's not fully tuned into how my mind works and I'm actually pretty damned amazing at it.

I also have two daughters - one diagnosed, one awaiting assessment - it's not an excuse for bad behaviour, it's an explanation for them of why they respond to certain situations in the way that they do and why society views their responses the way they do. They're fairly positive about that.

My DN was diagnosed at the start of high school. School were then able to make relevant accomodations - more free periods, pass to get out for regulation purposes, use of laptop etc. Up to extra time as required in exams. He smashed nat 5 and highers and is off to uni. These accomodations allowed him to reach his potential.

It can help with claiming benefits if needed, it can be useful for medical staff to be aware, and universities and workplaces are legally required to make reasonable adjustments if a person is disabled. Even 'mild' ASD as you call it is a disability, and without the right support and accomodation can become a lot more than mild.

Because three separate schools have said that they won't refer. But others have suggested a private assessment. I think it is fairly well documented that it is both quicker and easier to get a private assessment than on the NHS.

Well, I don't know that a diagnosis does make parents feel less guilty, OP. I think if a parent has spent their child's life to date expecting them to be better at making friends, or funnier, or more intuitive, or more obviously empathetic, or impatient with them for being unable to tolerate the sensory impact of clothing or crowded situations or noisy environments, and then they're diagnosed with a condition that means actually they need a fair bit of extra help and differentiated teaching to cope with these things that you've been impatient or dismissive of, it could make a parent feel quite a lot more guilty, couldn't it?

Bluntly, you obviously think your child is autistic and you obviously think that they're going to need extra help and support, even if that's just informed understanding of their traits from the adults around them. Ask yourself why you are hesitating over whether they should have that.

My DS was flagged up age 3 as he had very little speech.

6 years later we are still waiting for a diagnosis as he was initially overlooked due to ticking too many boxes. He is bright so does well at school (lots of support required) and does activities (supported by me) so we were allocated an anxiety course.

As soon as they met him at the anxiety course they could see he was autistic (duh) so we got put back on the waiting list.

He is manging fine at primary school but is likely to become a school refuser for secondary school as he will struggle without support in place for all the different rooms and subjects and teachers. With the right support he will thrive. He also refuses to communicate with adults so most teachers will find him rude as he will just ignore them and stare into space unless he decides.

So even in 'mild ' (???) Cases a diagnosis is often imperative.

Year and a half wait for a private assessment in my area.

If the disability is having a material impact on the child and their behaviour, then yes, a diagnosis is helpful. There are a couple o flines in your OP that I think highlight where you're going wrong.

And these strategies can surely be employed without the diagnosis
This is 100% true and it's absolutely true that many families do this. The challenge is that many families do NOT or even when the immediiate family do, extended family/school/other places won't because they will see it as "pandering" or "silly" or whatever. A diagnosis can have a material impact on how strategies are deployed, consistently, across the child's social, medical and educational activities.

And in fact, in a few cases, I wonder if it might risk 1) creating a narrative about the child that they may start to imitate or feel boxed in by, and/or 2) stop parents from reflecting more deeply on their own behaviours, boundaries and expectations.
This is, of course, a concern. As is your comment Now I know he is autistic, he might still be doing those things but I know why, so it must be true' doesn't help me.
The problem however, is that this is not a challenge of diagnosis, it's a challenge of poor or weak parenting, whether or not the child is diagnosed. There are plenty of parents with diagnosed children who use that as an excuse to not try. There are equally large numbers of parents of children without a diagnosis who cry and complain they just don't know what to do. The diagnosis itself is not a factor.

Re the child feeling boxed in etc - my experience is that understanding WHY they are different or have different experiences to their peers can be very helpful. I think there IS a risk of a child being "othered" by such a diagnosis, but again, I would suggest this is not the problem of a diagnosis in itself, it's how it is handled, how it is explained and how it is accomodated that leads to this. eg, DS knows that some things are harder for him, he understands why this is, and works hard to find strategies to manage these issues. Pre diagnosis, he was tending towards considering himself "stupid" or "pathetic" which was, of course, very concerning for us.

I think it’s useful. Not sure I’d class my sons as mild (uk. Not graded) he also has adhd combined.

There are things the assessment brought up that I had no idea my son struggled with. One of which is he absolutely couldn’t label the emotions off a face from a book. So things jd thought were solely Rejection sensitivity disorder, were ALSO that he can’t read faces ( in the case of sarcasm etc) so the 2 struggles combined to pack a punch as to how rejected he felt.

He has just failed English (maths and science fine). He could have had someone break down the questions in a way his brain understood, If his audhd results had came a couple of weeks before they did. He probably would have then passed English.

He’s starting college with discreet support available from the off.

regardless, it certainly won’t hinder him to know who he is, and that he is understood and loved I.M.O

So have the school said they see no traits of autism in school therefore they cannot refer as there is nothing to see and then suggested if you want to pursue it then to go privately? The presence of autistic traits across multiple settings is a key diagnostic criteria.

It's different for every individual surely. My parents had no concerns when I was a young child. I massively struggled with socialising at secondary school and understanding how to fit in. I suffered with extreme anxiety and presented as a painfully shy child who kept their head down, did their work, didn't cause issues but I was crumbling on the inside but I felt such a pressure to "conform". I was severely burned out and stopped going to school at 15 with a diagnoses of anxiety and depression, stopped getting out of bed. Looking back now, i know it was autistic burn out. I am nearly 40 now and still feel like an alien and autism has only really been on my mind for the last couple of years, awaiting assessment. Do you know how many desperate times in isolation I've spent trying to figure out why my brain doesn't tick the way everyone else's does? I knew I was different as a child and it never goes away and having an explanation won't fix it but it definitely stops me feeling so much like an alien.
I am probably perceived as "mild" on the outside, married, 3 kids, working full time in management and mask mask mask but I worry about a breakdown.

It is quicker to get a private assessment but if school are refusing to refer that will be because they don't believe she is autistic. Why do you want her assessed? What do you see that makes you think she is autistic?

The autism spectrum is not a linear scale, thus there is no mild or severe end. It is more like the colour spectrum. It would be more accurate to describe it as a set of many scales of specific traits/symptoms within a spectrum.
The issue people have with the word ‘mild’ used by people like you is that the diagnosis requires the individual to be significantly impacted on a daily basis in the three areas of focus. The words ‘significantly impacted’ do not correlate with the word ‘mild’.
If you are making a comparison between two autistic people who fall on different scales within the overall spectrum then make it clearer.

For my son he needed to know why he is different from other people he needed to know why he does things and sees things the way he does
This is why we got his diagnosis at the age of 18
For him not for anyone else

Don't know why you'd say it's a wind-up, unless you are exactly the sort of emotive responder I specifically said wouldn't be helpful to me. If you read the rest of the responses here there are plenty that 1) say that they/their children probably would be diagnosed with ASD but it wouldn't be helpful and 2) say that these are questions that they in fact want themselves to ask (but feel that they can't because they will be jumped on by overly-emotive parents baying for a fight because obviously we have nothing better to do than attack their children). My suspicion is that a good proportion of these people have children who genuinely have what would 'usefully' be diagnosed as ASD, and a good proportion have children who would continue in much the same way without the diagnosis (or even do better if the parents did some introspection. Just because I am saying this, doesn't mean that I apply that to @frazzledbutcalm, which I definitely don't.).

In fact I find @frazzledbutcalm's response is so so helpful - even though it sort of verifies both sides of the question. Those sound incredibly debilitating and worthy of every understanding and sympathy. Still require mitigations of course. And very different from the presentations in other children - I'm thinking about emotional meltdowns, which many children have and whether it's because of ASD or something else, need us as parents to work out the triggers and mitigations.

What I am hearing is that having something 'concrete' is very helpful - thank you to those who have given the actual material changes that having this 'concrete' thing brings.

A private assessment may be quicker. It is not easier.

It isn't that the child ISN'T presenting at school though. It's that the school don't want to refer. This is exactly our scenario. Other children have commented on the teacher's critical response to our DC's ASD traits (telling their parents how unkind the teacher is to our DC). So they see it, use it on DC as a point of criticism and then to us, the parents, deny seeing anything at all.

If schools acknowledge it, they know there can be a push for an EHCP which is yet more work. And I do sympathise. The workload in schools is already unmanageable.

See - I have also known children who have also become depressed at the idea of 'having ASD' because it feels very trapping - 'this is for life and there is nothing I can do to change this'. Whereas without the diagnosis I wonder if they could forge a more positive path with exactly the same mitigations that they'd need with a diagnosis in hand. I do think that narratives can be very powerful.

OP, I’m going to take your post at face value but it’s clear you don’t know much about autism. People with ‘milder autism’ are often high masking so therefore these people often don’t appear to be autistic to the lay person. Intelligent autistic women are 13 times more likely to die by suicide, autistic women account for 1/3 of women diagnosesd with anoxeria, 90% of autistic women with also be diagnosed with a mental health issue, some incorrectly diagnosed and will be on strong and inappropriate medication. IMO these are worrying numbers and more importantly will mean these women will as best recieve treatment which won’t help but often the treatment will make things worse.

Yes, autistic people need to learn how to best manage their lives but without the knowledge that they’re autistic and understanding how their brains work that will be much more difficult.

My DC has a diagnosis of high functioning ASD. It’s made a huge difference to them. It’s about knowing who you are and being able to embrace that. Also helpful for the school to be able to understand certain behaviours. and of course us as parents are able to frame our parenting in a different way

My son is diagnosed with ASD, over the years it has become apparent that our other kids have traits to varying degrees to the extent that I believe the eldest would likely be diagnosed if she sought a diagnosis.

She has other diagnosed issues dyslexia and dyspraxia which she did have significant interventions with during school but not ASD. She is now in a top uni performing incredibly well and we support her as best we can.

I doubt she will pursue a diagnosis at this stage of her life if that is what you are asking but we do set up a lot of accommodations to support her from our knowledge of dealing with her sibling and we do talk her down from emotional meltdowns more than once in a while.