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 disagree that it's selfish to not pursue a diagnosis in every situation, it very much depends on the circumstances. This seems to be an emotive topic for you, and I think sometimes people can see different people having different ideas or making different choices as an attack on theirs, when that isn't the case.

My diagnosis changed my life. I no longer had to feel guilty for not being able to do basic tasks. I could finally advocate for myself because I had a disability.

Thanks. That wasn't my question. Do you know any who choose to get assessed, we're diagnosed as autistic and regret going through the assessment process.

I've never met one, and in fact have never even heard someone who has been diagnosed as autistic as an adult saying they debate whether they should have been assessed.

I've also met people who were assessed but were not diagnosed as autistic who are struggling with the fact that their self-diagnosis, that they had started to identify when was wrong. Often they conclude the (lack of a) diagnosis was wrong. Not being ok to be told you are not autistic is a perfectly good reason to not pursue an assessment and this was part of my reason for delay - I wasn't telling people I was autistic though, just thinking it myself. I personally would never have said I was autistic without a diagnosis - even with my closest friends and family I qualified it. Because it's impossible to objectively assess yourself.

No I don't, because they were adults who made that choice for themselves so were sure that it was what they wanted. What I was talking about and the OP was as well, was a child who wasn't old enough to decide for themselves, and in that case, in some cases the parents may want to consider whether to wait until adulthood when the person can weigh up the pros and cons and can make that choice for themselves. As some people will wish to emigrate as adults, and even if they dont, unfortunately the NHS is in crisis so by the time children reach adulthood it may not even be here, and people may need to get medical insurance which having a pre existing condition makes difficult. It's just something to consider, it shouldn't be controversial to say that there are pros and cons to everything and it's best to consider them before making a decision

I'm not autistic myself but I do have a other disability, as a result I cannot move to many countries or get affordable health insurance, so it does put restrictions on my life. It's just something to bear in mind

I understood that. I (and I believe the poster you were responding to) weren't talking about formal mental health diagnosis, but about support needs.

Either an autistic person has had interaction with the 'system' that is evidence they have support needs (or adjustment needs) that make them unsuitable for a visa, or a certain job, or they haven't. Them having a diagnosis or not is irrelevant to what support needs they actually have. Now having a diagnosis might possibly make it easier to get support, but the issue is whether the person can demonstrate they don't need support. Unless a diagnosis report recommends extreme support is put in place (not a risk for the "mild" cases that are the subject of this thread), then the diagnosis itself at worst creates a rebuttable presumption that there may be support needs. Pretty easy to rebut if you haven't ever used any state funded support! The diagnosis isn't the issue.

Now someone could choose to actively conceal their needs and lie during assessment for a visa or a job, but then as I said whether or not you have a diagnosis isn't relevant - if you're going to commit fraud then surely you'd just not disclose the diagnosis as well!

I have zero concerns that my autism diagnosis would impact my or my child's ability to move to Australia. There's no way there would be a conclusion either of us were likely to be a burden on the state. Equally, if my child wants to join the police I'm not concerned - I want them to be properly suitability assessed and their autism is relevant to a decision on whether or not this is the right role. If they're not suitable for the job they need to find out before they start!

The reason I supported my child heavily in getting assessed (school though I was mad!) was because I wanted to ensure they never found themselves in the position I did, and we could work together to be able to identify early warning signs of autistic burnout. If they had not wanted to be assessed, I would fabr listened and discussed their reasons. The diagnosis is irrelevant to what support they receive - none of that requires a diagnosis. It is fundamental to working out how to manage their condition.

As I said, it's ultimately choice, but I would like to avoid incorrect information that somehow having a piece of paper closes doors. It just doesn't.

And is that because of your diagnosis, or because of the support you require (or predictable support you will require in the future for a progressive condition)? I have no issues with you getting the support, but understandably other countries will take that into account as they want to prioritise resources on people who are from that country or have a need to be there rather than just a want (eg asylum seekers).

My autism has never cost the UK government a penny. There's no reason to believe it ever will. I have a family member whose child is in high cost specialist education for years and has recently been diagnosed with autism. I would assume that they would get rejected for an Australian visa now, and also would have gone two years ago when the child had actually been assessed and the conclusion was that he wasn't autistic. The diagnosis isn't the issue. The support needs are.

And on the health insurance - it depends on whether you need your condition covered. If I exclude any coverage for autism, my premium is the same as anyone else's. If I want it included, then obviously it's more expensive because the algorithm says I'm going to cost more.

That might not be fair, but again if you're actively looking to hide previous issues from an insurer then that's fraud and you might as well also just lie and say you haven't been diagnosed.

It's why we're lucky to live in a country with state healthcare.

No I don’t think it’s an attack and please don’t dismiss what I think by saying it’s an emotive subject for me. It really isn’t . I simply think it’s wrong. Frankly any kid with undiagnosed autism has far bigger things to worry about than a hypothetical desire to emigrate to Australia in the future. Good luck with explaining that as your reason a child struggled in the dark throughout their life and had information that could help them withheld.

Needing 2:1 care, EOTAS (sounds so similar to one of my kids) or, as in case of PP, frequent hospital inpatient stays, is most definitely complex and high needs.

I really didn't want to think like this, and I still believe in diagnosis and support for everyone, however nearly all the ND children I know well enough to comment on are being described as complex/high needs. The term (like mild/severe, high/low functioning) is almost completely meaningless. Perhaps labelling perceived intensity of need within neurodivergence is the problem itself. I still feel that certain presentations of autism are being erased from the autism community.

I agree with so much of this eloquent post. I also don't agree with functioning labels.

Just want to push back on some points. Firstly, it is so, so important to listen to people with lived experience, however when people say "What autistic individuals are telling us" they mean what some autistic people are telling us (I.e. very literally the ones who can tell us). Carers of non speaking or significantly language delayed autistic people are often disregarded as speaking for/over their autistic loved ones, but there is a sort of irony to that.

Secondly, you are correct there's not a neat sliding scale of need (e.g. the young person who is cognitively able but requires 4:1 care, stays in inpatient units, violent outbursts vs a non speaking, incontinent autistic young person who is content, accesses loads of community, attends their school happily in standard special school ratios etc). However, that's not how this concept is often applied. It sounds like you work with preschoolers; many cognitively able, verbal 3 year olds with distress and outbursts, if they have the understanding (particularly with a diagnosis!) will learn to ask for what they need and advocate for themselves a bit, reducing distress and outbursts, their lives just can't be compared to that of nonspeaking autistic children. The concept of no NEAT scale of need is now rapidly being applied to mainstream ability children, who are unhappy but not severely mentally unwell (because mainstream schools are shit by and large), and are progressing with some reasonable adjustments* vs children who are doubly incontinent, cannot even ask for a drink, don't understand traffic rules, headbang/bite themselves etc.

• no I am not talking about children who are so distressed they can't attend school, or need hospital stays, or require 2:1 care to keep them safe, or self harm, or anything else like that.

How are they being erased? There are differing needs. My child’s support needs don’t remove anything from yours and yours don’t from mine. They are different and will often be from differing sources.They need differing care and all of us have to fight for what we get.

Is it the super power thing because that annoys the shit out of me too and in reality I have never come across anybody in real life who signs up to that. Everybody with ND kids know very much how severely life is impacted and how much they have to fight.

I find it's the self diagnosed who claim Autism is a superpower. I've yet to meet anyone who is actually diagnosed say it's a superpower

Because nobody is talking about them, planning for them, they are forgotten about and ignored. Nearly every presentation of autism in the media is not of them. People genuinely look at you like you have two heads when they see your child in public and you say they're autistic and they say things like "are you sure, my neice and granddaughter are autistic and they're not like that" (in a sort of weird, horrible twist of the old classic "they don't look autistic"). There are groups specifically for autistic people/ children who make it very clear (or outright say) not the type of autistic my kids are. It's even happening on a commissioning level, more specialist schools for autism /SEMH being built at the expense of the old style special schools - so the original special schools get more crowded, more dilapidated, children wait in mainstream for years getting 0 education because they cannot literally understand the words coming out the teacher's mouth - instead of fixing the awfully discriminatory mainstream schools which should be able to handle almost all cognitively able autistic child. Nearly every autism advocate is verbal, cognitively able etc, so they advocate for the things that they know they would need for themselves (which is completely understandable situation), but if parent carers speak up about about their non verbal autistic adult children, they quite often get told that they don't speak for their adult child / the autistic community.

I could go on and on.

I completely agree with you @SomethingInnocuousForNow

No representation in the media is like any of my dc or me either, it’s too unpalatable to make for viewing.

There are no groups that meet my needs. I’ve actually attended groups that don’t and quietly left. Groups need to diversify to be useful to those in them however it takes people to set them up which is beginning to happen. There is a need for differing types of group. There are some I can’t attend ie for those with a learning disability too and I get that. I don’t begrudge people those groups and I don’t think any group being set up to meet a need not being met should be begrudged.

Why should children like my child poke up with mainstream when a school more suited will bring about a better outcome? I don’t think it’s fair to say they should be able to tolerate mainstream with a few tweeks. You can’t say ALL cognitively able child should be able to be accommodated in MS, that is ignoring the huge difficulties that come with autism that cognitive ability does not erase. It doesn’t work like that. All schools are dilapidated, there’s a huge problem in mainstream, it’s not just special schools. All kids matter and the entire SEN sector is underfunded and inadequate.

I didn't say "they should be able to tolerate mainstream with a few tweeks" I said that mainstream should cater for them. I have said in previous posts that mainstream is hell on Earth for most autistic kids, it's really wrong. I also didn't say all, I said nearly all. Mainstream schools should NOT only be for children without SEN - what kind of society is that? They should be adapted and suitable for nearly everyone who can follow a national curriculum.

It would be great if we were living in a society of abundance - everyone gets the school (funding) that they need, the groups they need etc, but we don't and at the moment the presentation of autism (can't say complex needs...) I was talking about get such a little slice of the pie.

I don't want to out myself with any more specific examples.

Autistic kids that are missed and ignored a small slice of the pie. My daughter had nothing, zero , zilch even though she wasn’t even in education for several years!!!! How can you get less than that?She is not alone.

No, she is not. My son was not given a school place for many years. No school would take him.

I agree with you that “some” is a very important word.

The question of who speaks for those who cannot is also incredibly important. My personal opinion is that the addition of the voices of some autistic individuals is a very positive development. There was a time when we didn’t listen to their (“refrigerator”) mothers, and twenty years ago it was only Temple Grandin and Donna Williams that were trying to give some insight into the experience.

It’s a ridiculously recent development that the perspective of autistic adults about their own experience was given any credence by professionals.

Each of the perspectives, speaking for the speechless, is imbued with bias. And on different platforms, or in different settings, those opinions have different prevalence.

One of my frustrations at the moment is that autism has become a trendy political issue and a lot of the virtue signalling that results is not only, not particularly on point, but also draws attention away from where the funding is inadequate. I had a lot to say on this to the door stepping politicians during our last election.

The group of dc I was referring to above ranged in age from 2 to 16. None had profound medical disabilities preventing mobility although some required physical aids, some had significant learning disorders, some had hearing loss, and one was blind. There was a wide range of challenges.

I don’t disagree with you when you say that
their lives just can't be compared to that of nonspeaking autistic children but I think it’s worth remembering that some of those children developed the capacity to communicate and eventually advocate at a relatively (relative to developmental norms) late stage, and have memories of their experience. And crucially, bring important co ideations to bear on the treatment and methods applied. I actually think that the group that is perhaps most marginalised is the parents of the children with complex, high support needs.

The problem of comparison though is a huge one. It creates so much conflict within the community. Ideally there would be resources for all but in reality it’s only in the relatively recent past that it’s been safe to risk “coming out” in any context as atypical. Eugenics was an influential narrative in the first half of the 20th century, and it’s still lurking. Ableism and capitalism go hand in glove. And funding is limited. I would argue that the 21st c economy is reliant on some adhd and autistic tendencies, in a way that the 20th c wasn’t and that bodes well.

I also want to add that within my scope of experience, some of the dc who were successfully transitioning to mainstream school were also managing behaviours like biting, scratching, self injury, verbal assault, tics, echolalia, and even some toileting issues (not incontinence). They were learning to recognise triggers, and urges, and then figure out an appropriate alternative.

I wasn’t working directly with dc who have flown under the radar, so to speak, and are in mainstream provision either before issues become apparent, or without any outward signs of distress. But I know that with the cognitive capacity to manage their outward presentation, comes an enormous cognitive load. And the descriptions of restraint collapse bear that out.

It’s difficult to settle on terms of differentiation that aren’t problematic. One way of stating it is that some of our autistic population have a wider range of options, a capacity for reflection and redirection. We absolutely shouldn’t forget those whose options are limited. And we also need to bear in mind that those who outwardly appear to be managing well, can be managing an incredibly large load.

Reading back over this, I guess I’m not actually seeing two completely disparate groups probably because I was too close to the details, and seeing different manifestations of the same underlying cause.

But that’s not to say that I’m entirely disagreeing with you either. I think it’s a difference of perspective. And it’s just too easy to marginalise someone else in this struggle.

The phrase "autism is a superpower" drives me nuts. It's simply not. The only benefit I get from my autism is that it sometimes balances out my ADHD meaning I can actually focus. Meds do the same thing though and I'd happily swap that advantage for an ability to manage social communication at even a 'normal' level. There are obviously multiple different ways of measuring success in life, but I reckon I'd be at least two grades higher at work if I didn't struggle with reading between the lines, could get comfortable with playing even minor level office politics to push myself forwards, and was actually willing to big myself up at interview in a way that seems actually to be socially acceptable but I consider to be lying.

I can get comfortable with the fact that my autism brings me disadvantages, but I have other areas (unrelated to my autism) where I have massive advantages but I'm not 3 and I don't appreciate being patronised about superpowers.

And on the 'but group a are getting too much attention and it takes away from group b', this is fighting over who gets to dive in the dumpster rather than addressing why group C is eating steak and chips each night whilst A and B are dumpster diving. The issue is that there needs to be advocacy as a whole for support.

I hate the superpower rhetoric too.

It isn’t helpful to put the problems with special schools on one presentation of ASD. More SS placements are needed across the board.

I don’t think complex needs applies to all autistic individuals. I am autistic. I wouldn’t attach that phrasing to me. I have ADHD and cPTSD as well, but I still wouldn’t. DD2 and DS2 and also autistic. DD2 definitely doesn’t have complex needs. She was diagnosed before the move the ASD and her actual diagnosis is Asperger Syndrome. DS2 has had it used about him in some EHCP reports and medical reports, but perhaps it is a perception thing because his needs are not like DS1&3’s needs. He will hopefully be able to work and should be able to live independently. I see a lot of reports and EHCPs for other DC too and not all are described as that.

None of us are represented in media portrayals. Neither do SEN groups or autism groups work for us.

At the end of the day, your brain works how it works, whether you give it a certain label or not. I saw a man on TV recently talking about his autism diagnosis in his 30s. He said it allowed him to understand why he struggles with certain things other people do not, though he had been successful in life nonetheless. Could we not accept ourselves as we are, if we don't get a name to put on it? Don't we all have to find ways of managing, whether we meet a certain list of criteria or not?

There are people I know, diagnosed as adults, who you would never know were anything other than "neurotypical". I am not party to their every inner struggle, but it's clearly not the same disease as someone who is nonverbal and will never be able to live independently. The current discourse even discourages separating "low-functioning" and "high-functioning"; obviously that discourse is necessarily dominated by the most high functioning individuals.

As a child, when you MIGHT actually get some extra help with your difficulties, I can see it possibly being more worthwhile. But it depends.