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.

I don’t think there is anything at all wrong with acknowledging the differences in functioning with ASD. Being non verbal, incontinent and needing 24/7 care always is different than being a member of MENSA, being able to get married and live and work independently. It is obviously very different to parent children who have greater support needs too, and I think it’s important to acknowledge that. This doesn’t take away from the very real struggles, difficulties and experiences of those with so-called ‘mild’ autism.

I also don’t think there is anything wrong in considering the pros and cons of diagnosis either.

The terms low support, substantial support and very substantial support better describe the “levels”. Someone with low support needs still needs support and has marked deficits in multiple areas.

I once listened to an autistic person who explained that ‘mild’ is just a label for how society perceives it, not how the affected person experiences it. For example, if an autistic person is good at employing masking strategies to cover up their autistic traits this can cause them huge emotional stress, anxiety and burn out, but neurotypical people will say this is a ‘mild’ case as they are not having to be affected by the behaviours

That's really interesting.

Interesting that the votes are so split - I think it's because your premise doesn't really make sense. Diagnosis is not at the decision of parents - someone will meet criteria, or they don't. I know it's a clinical diagnosis so there is some level of subjectivity but it's still not a random thing that just anybody can decide they want.

I found Neurotribes incredibly interesting on the history of autism and essentially how we got to where we are now. It made a lot more sense why such vastly different presentations can be contained under one umbrella.

I think anyone is entitled to seek medical advice on any issue which is bothering them. The NHS has to obviously manage its budget and decide what the criteria is to put someone through a full assessment.

(Will come back and read the rest of the posts in the morning!)

How old is the child in question here? Has anyone asked them how they feel about the situation/themselves?

Re school they're not qualified to diagnose or to decide a dc doesn't have asd and many of us would be millionaires if we had a quid for every time a school said our kids didn't have asd but they actually did. They're not so hot at spotting the masking children. The quiet ones who never speak up and behave impeccably don't cause them any problems so they don't see their difficulties.

many asd children will also just about muddle through primary but fall apart in year 6/7 or later when the intensity of school increases. Then the MH challenges hit and that is not something you want to get into if it can be avoided. Suicidal self harming teens too anxious to attend school or live any kind of life due to unrecognised/unsupported asd and the subsequent burnout that comes from that are not the outcome anyone wants.

Hmm. Even if we discount the experience of the people around them, I really wonder to what degree the person saying this is really accurately comparing his or her own experience to that of the non-verbal, incontinent, adult smashing her head into the wall repeatedly while screaming, or the 200 lb adult man who assaults and seriously injures his mother and so ends up institutionalised.

Because the assumption seems to be all of their experiences of autism are the same, and frankly I doubt that is true.

I've just watched Inside our autistic minds by Chris Packham on the recommendation from another thread, and just learnt another statistic. That intellectually capable autistic women are 8x more likely to commit suicide than the general population too. That's a lot of women who would be seen as having mild autism not getting the right mental health support at the right time.

That's on top of 9 in 10 autistic women experiencing sexual assault at some point in their life compared to 3 in 10 for the general population.

I feel really sad about these figures, and I think it's no bad thing to have the possibility of autism explored if it's suspected so that a lot of risks can be accounted for a mitigated.

I wish the series was longer than 2 episodes that only focus on 4 autistic people, because it only gives insight into 4 individuals niche experiences in very specific aspects of their lives, but I loved the premise of the show and perhaps it would be worth a watch for you too OP. It is on BBC iPlayer.

Perhaps someone mentioned this already, I only read a few pages in - but it's also worth considering what downsides or restrictions a diagnosis might put on your child in the future.

If they get to be adults and want to immigrate somewhere else to work, or join the military, or perhaps other things (who knows what it might look like in 15 years) it could very well be that a diagnosis could prevent that.

People are so keen to get things diagnosed these days, they forget that once any diagnosis is made, there it is on your record, probably forever. And there could be all kinds of impacts, including but not limited to cost and eligibility for health insurance in the future.

Nephew is diagnosed as autistic and honestly his parents seem to be using it as an excuse to hold him back and stop him from thriving.

Poor parenting, lack of boundaries, 24/7 access to screens and junk food in order to avoid a 'meltdown'. They have no expectations of him. None.

Some parenting wouldn't go a miss in a lot of cases. And yes, I realize that it's not always as easy as that: but sometimes, it actually is!!

Ok, but literally where does this end???

DS has "high functioning" autism. Mainstream education is academically right for him and he has great potential in most subjects. But it's a bloody tough environment for someone with a social and communication "disorder" with added Sensory Processing Disorder. He generally masks well. So well that back at primary school his teachers totally failed to recognise it despite the NHS headed diagnosis. "Fortunately" he just bottled his frustrations up to unleash spectacularly after school. The referal was originally triggered by a raging 4 hour meltdown because I impatiently asked him if he'd changed his reading book at the end of the school day (it had been a week of asking).

Diagnosis was the information that made his behaviours make sense. Diagnosis was opening the door to parent better, with the right approaches, expectations, adaptions and consequences. It was understanding that his brain was wired differently, and his experience of the world was very different to mine.

Children with his level of function are expected to have mainstream outcomes. Qualifications, jobs, friends, relationships, but the hurdles to get there are much greater. Diagnosis is like turning on a specialist UV light to see things that are not normally seen in regular conditions.

My other DS has asthma. Knowing he has a chronic inflamatory condition of the lungs, if he starts wheezing I don't conclude that he's unfit and needs to go for a hard run to get fit; he needs rest and medication. Knowing what his medical condition is allows us and the people to care for him to look out for early warnings and manage the condition safely. Understanding a child's development is no different.

Often the greatest resistance to recognising a child's ND condition comes from families where it's clearly a common condition through the family. DH is mildly guilty of this. His traits are not of diagnosible strength, and are normal range of impact on his life, but his brothers, cousins and uncles are dominated by unsociable, technical, niche interests, perfectionism and very routine lives with little variety. It's only the youngest generation that have begun to have diagnoses.
I know another child, far more obvious than DS (I picked up traits in him before seeing them in DS and they've become more and more entrenched as he's grown up) and the parents don't see it, because again, it's the normal culture of their extended families. Fortunately he's had supportive schools but they are so limited in what they can do until parents want to start assessment. I reached a point where it was better to swear my children to secrecy that I suspect he's autistic so that they could socially cope with his needs because his behaviour doesn't match the way they understand the NT handbook to expected socialising. Better "undiagnosed autistic" than "rude", "boring", "selfish" and all the other negative mis-interpretations of his behaviour. From sharing that, they got on better together because they understood his behaviour better and it's about his social skill development, not malice or his feelings about them. By not being diagnosed, he's missed early interventions to develop his skills and he's been left to flounder and miss out on support to bridge those gaps that his ND brain doesn't naturally process are there.
Again, society will hold normal expectations of him and that could incredibly difficult through the teenage and young adult years. That's also an age where individuals often struggle to seek and accept diagnosis unless they've really hit some damaging lows from it.

I know a significant proportion of ND people (autistic, ADHD, dyslexic, dyspraxic...) many diagnosed later as it wasn't on the radar to spot high achievers, especially females back in the 80s-00s. My geeky, mis-fit cluster of school friends are finally getting diagnosed in their 40s. It's not "overdiagnosis" it's just the personality types I tend to be attracted to and accepted by. And the odds are high that I probably have undignosed ADHD which would certainly explain a lot of clanging errors/situations since childhood. ADHD friendly strategies certainly make much more sense than NT advice which are paths to distraction and busying around acheiving SFA and wondering why the world's pissed off with you after all that effort. But I've survived the education system and got some kind of mostly functioning adulting going on after a couple of decades of trial and error. Assessment can be buried in my mental procrastination heap until some urgency occurs. It would have been more useful and saved a lot of tears and disappointments 20-25 years ago.

I see giving my children the knowledge of how their brains are wired, their strengths and areas of challenge and opening appropriate pathways to deal with life as a gift. They're not broken, they don't need self-flagellation and mis-understanding, they need understanding and appropriate strategies to help them reach their potential and find their forms of contentment.

It isn’t. 🤣at the idea you can parent away autism. You can’t. I tried, with dire consequences. The ignorance showed by people who haven’t walked the walk is laughable. Do you tell parents of kids with more visible disabilities how to parent? Autism isn’t pretty and you can’t just erase it with boundaries . It’s a protected disability for a reason.

I think this issue is that many people don't realise that the more 'severe' symptoms some people have are often actually learning difficulties or other genetic conditions on top of autism.

My friends son is autistic. He also has a genetic condition that leads to him being non verbal, violent outbursts,.eating issues etc. It's not that he has a more severe form of autism - there's major genetic learning conditions on top.

Thats why there used to be high functioning autism (no additional LD) and low functioning autism (with an LD). These labels are no longer used because the functioning concept isn't helpful.

Is this really true? Are most people only able to refrain from calling someone thick, difficult, weird or scatterbrained if they are shown that they have a formal diagnosis?
I think that is so sad.

I know what you're saying but I think it's unfair and not necessarily true. Very high support needs autistic people (e.g. non verbal or language delayed) don't always have LD and recently there's been a sort of erasure of autistic people for whom the diagnosis was originally meant for (I know, massive problems with Kanner but point stands). Several parents of high needs autistic people are now saying their children have LD (even if they don't) instead of autism because the understanding of this presentation of autism is now so low (so many people genuinely expect 'Big Bang Theory' every time). I've been in lots of situations where it's clear people out in public don't really believe my non-verbal, rocking, incontinence pad wearing child is actually autistic. I have another child who technically doesn't have an LD but he is severely language delayed and extreme restrictive behaviour, never been to mainstream etc.

Many DC with severe autism, can suffer with global development delay, dsypraxia coordination issues, speech and language disorder, learning disorder, sensory processing disorder, it is very rarely just one diagnosis of Austism.

Interesting.
My, now adult, DC are most probably ND. I thought DS could be autistic when he was a toddler/young child. He had CAMHS input at primary school for anxiety (was much easier to get referred then), but no-one mentioned autism and I was well, if the professionals can’t see it then he can’t be. I regret not speaking up about it. He had a lovely caseworker as well.
Now he’s had numerous issues and has had therapy and therapists have asked him if he’s thought if having an autism assessment but he hasn’t yet. It’s his call.
My main theory of why he couldn’t be - as a child - was that he was always very sociable and made friends easily. But there wasn’t a lot of emotional dysregulation going on behind the scenes.
Conversely DD is convinced she has ADHD, she has had an initial assessment for student support, but not the full diagnosis. When we first talked about this a few years ago DD told me over a 2-hour convo what she struggled with, I had no idea about most of it as she masked so well.
Both DCs are or have gone through uni - live independently, have friends, but both suffer w high anxiety, one is medicated, both have therapy.
I judt don’t really understand what autism was when they were younger - maybe they wouldn’t reach the threshold of diagnosis but the certainly have obvious ND traits.
Now im much more educated about it, I know their triggers and what not to say. They both manage themselves but struggle still - if DD is adhd then she could take meds but she has to get to that point.
If I could wind the clock back and not get so exasperated at their childhood behaviours, I would. I hope I’m making up for it now
So my answer is - if you’re are showing traits at least examine the possibility. Take them to the GP, start assessment process.
Perhaps there’s some over diagnosis but better that than help not given.
I was looking back at people I went to school with and thinking they’d be diagnoses all over the place now. I knew one boy who was profoundly autistic- his brother was in my class and looking back he was definitely on the spectrum too.

It’s so hard isn’t it. It doesn’t help that all the typical behaviours that people associate with it are those exhibited by men/boys. I’m relieved that drs are now realising the differences and are diagnosing girls/ women now but I think it’s going to take a while for society to recognise those differences. Burnout is huge isn’t it as socialising is great but the anxiety and stress and overstimulation associated with it is so hard.

Exactly. I find it you call it mild it just mnimises our needs

I do have a diagnosis of mild hearing loss which is true in that case - I struggle more than people without the diagnosis but unlike my friends DS with moderate to severe form of it, I don't need hearing aids

You can have mild autism, autistic traits but no diagnosis, you can feel disabled by autism or not. You can feel disabled without autism, and the impact of other disabilities or mental health conditions may be much more significant than autism.

I used to think more assessments and diagnoses are the answer. I now believe that a range of easily accessible supports not dependant on diagnostic label as well as understanding and acceptance of differences are a much better option.

A diagnosis doesn’t get you anything. Support for mental health is not dependent on diagnosis.

The fact is mental illnesses are often more complex or potentially "worse" for autistic people due to a combination of factors including higher rates of anxiety and depression, increased social isolation, sensory overload, and difficulty accessing appropriate support and diagnosis for both autism and mental health conditions. Experiences like stigma and discrimination can exacerbate these conditions, and there's a higher risk of co-occurring psychiatric disorders in autistic individuals.

@Kdfjh4847 A diagnosis of neurodivergence is often a gateway to additional support, which is why many people seek diagnosis.

Support for mental health can be dependent on diagnosis, especially for more specialised therapies e.g for psychosis or developmental trauma.

I agree with @YellowElephant89 however a move away from diagnostic labels would require a massive societal paradigm shift which I don’t see happening in my lifetime sadly.

I must have missed this mythical support. I was told to go to social services if I wanted help. Except they weren't helpful in the slightest

@TigerRag If you’re referring to support for ND, I was meaning educational supports and accommodations which have been discussed at length by parents on this thread.