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.

Australia do take autistic migrants.

You may be able to emigrate to Australia with autism, but it is difficult because Australia's immigration policy can reject visa applications if the person's disability is considered likely to incur significant costs for the Australian healthcare system. This policy has faced criticism as discriminatory and outdated, and while the process for applying for a visa can be arduous, there are avenues for waivers or appeals, and the government is reviewing the health requirements.

How the Policy Works
Cost Threshold:
Australia's health requirements for migration can lead to visa rejection if the estimated cost of care for a person's disability exceeds a certain amount ($86,000 AUD or £45,000) within 10 years.

A Burden on Services:
This policy aims to prevent individuals from becoming a financial burden on public health and social services, though it's been called discriminatory and out of sync with modern attitudes toward disability.

Limited Exemptions:
Some visas may allow for waivers, and there is an appeals process, but these can be lengthy and expensive.

Canada is a lot better. Bizarrely you can to the USA
as it is a protected disability(who knows for how much longer and not sure I’d be rushing to emigrate there atm anyway even if I was NT), but you must be able to show that you will not become a public charge (i.e., likely to rely on government assistance) and that your disability does not pose a risk to public safety or health.

If my mother had known I was autistic, she wouldn't have battled with me on food.

I grew up in 1960s west of Scotland and my mum tried to feed me the local diet, which was pretty bland and soft. And I just couldn't eat it.

White fish, not even a lemon to go with it. Mashed potato, mince. Boiled eggs. Milk.

She would insist I clear my plate and apparently I would sit for about three hours, trying to swallow the food.

She would not deviate. Nothing was to go in the bin.

Meal times were a complete nightmare. She simply didn't understand.

Anyway this is an example of how it is so much easier to spot autism in children. You have so much more control over your life as an adult. You can eat what you like. Imagine if you were still being treated like that though. It would be so frustrating and those "mild" autistic traits would be anything but.

I think it depends on how well the child is managing without a diagnosis. If the diagnosis would help them get much needed support them it is likely to be worth it, but if they are managing without one it could potentially be better to leave it for now and let them decide as an adult whether they want to pursue a diagnosis or not, bearing in mind what pp said about diagnosis making emigration and things like health insurance very difficult. The way things are going in this country many young people are going to want to emigrate, and leaving that option open to them if possible might be a good idea. And if they wish they can always seek a diagnosis as an adult as many people do.

That's why I added the word, generally.

The fact is if you’re struggling you’re going to need support which will be on your records regardless of whether you have a diagnosis. If anything a diagnosis will lessen the amount of support you’d need and give you a better chance of emigrating as it would be better tailored. If my daughter had had her diagnosis earlier she would have had better tailored treatment as opposed to CPTSD on top from the wrong treatment.

It's not that simple; it really depends on the individual. I know a few people close to me who were diagnosed with autism as adults, even though they had no previous mental health diagnoses. Of course that doesn't mean they didn't find things difficult, just that they didn't have any record of mental health or other issues. As autism exists on a very wide spectrum, it's not wrong to consider whether, in a specific case, it might be better to delay a diagnosis for now in order to leave more options open for the future. Everyone's circumstances are different, and it's a shame that some people don't seem to get that someone considering a choice different from their own isn't a criticism of them or their family.

Autism suspicion by its very nature involves some struggles. That’s why it’s often suggested- due to struggles. All autism impacts life significantly. Why on earth anybody would not want to be better informed when handling or getting support for their child is beyond me. And the op asked- generally. If the answer is unpalatable don’t ask the question.

I'm not quite sure what you mean. Some people are obviously more severely affected than others, as with other conditions. Some children who may be autistic but are less severely affected may well be managing in school etc without a diagnosis, and a diagnosis may not unlock that much support anyway in that case. There may also be ways to get them some support without a diagnosis. So their parents may want to consider whether or not it is worth getting a diagnosis, as that could stop them from emigrating or getting health insurance etc in the future. Like everything in life its a trade off.

“If a child is not sleeping, fussy about food, hugely emotional dysregulated, or having meltdowns “ as described in the op that is struggling- a lot. Knowledge of whether it is due to autism will impact how all of it is handled and supported. A parent denying a child full knowledge which will help their child because of a possible future emigration is acting selfishly and restricting knowledge for some picture they have built up in their head.

The fact is the issues and behaviours of a hugely deregulated child, not sleeping and struggling with food can’t be hidden from health records or schools if they are to be tackled properly and why would any parent do that?😳

That sounds very logical but actually it isn't because part of the diagnostic criteria is that you have difficulties..... and presumably therefore support needs.

I'm not saying they should be hidden from schools or GPS etc atall, the OP mentioned that the child she was referring to had been told by school that they would not be referring them for a diagnosis. So presumably the family were considering whether or not to either push for a diagnosis through the GP or pursue a diagnosis privately. Sharing the struggles a child is having with their school etc and seeing if they can help is not the same as having a formal diagnosis of autism, and will not prevent them doing anything in the future. It's not selfish to want to leave options open to your child in the future. It's just something to consider when deciding whether or not to pursue a diagnosis. They may decide that the pros of a diagnosis outweigh the cons, or vice versa, but it's worth thinking about all the aspects before making a decision.

I don't see how an autism diagnosis is helpful for most people.

You can tell your employer you are ND, they can't ask for proof.

If you need support from council or a young person for school, both are helpful, but really there is no support.

You’ve challenged the relevance of the diabetes analogy, but I think comparing autism manifestations to skin conditions also indicates a fundamental misunderstanding.

But it also points to one of the fundamental diagnostic problems, that these disorders or divergences are understood externally in terms of how they affect neurotypical people. SM has given people a platform to challenge the prevailing beliefs and voice their experiences and that is slowly filtering into psychiatry.

There are differences in how autism presents - from the unmissable to the very subtle. And when attainment is judged against expected developmental norms there is also a range - a child who doesn’t learn to speak or toilet independently might be judged to have developmental attainment below a toddler level. While an individual who attends college with their peers appears to be developing as expected.

No one is disputing those facts.

What autistic individuals are telling us, is that the outward appearance is only half the story. And that despite achieving success commensurate or even exceeding their peers, their internal suffering can be horrific.

And calling it “mild” is signalling a disregard for the pain they’re in. Is it really surprising that people respond with emotion?

I have experience working with dc with autism some of whom were non verbal and doubly incontinent as you described, others preparing to attend mainstream provision and contrary to most people’s expectations there wasn’t an obvious sliding scale of need, nor was one group easier to work with than the other. Some of the dc were content, and cheerful, others prone to distress or outbursts but there was no correlation with verbal ability.

In terms of your own situation, money is one factor that might influence a decision because professional support is costly. Another factor might be the level of awareness about autism, and attitudes within the family. Living in a supportive environment, where accommodations and adjustments are made, and a child feels accepted and appreciated as they are, and can express their distress as it arises, will go a long way. Access to a nurturing school environment is helpful, or the capacity to pursue alternative options. At least one dp that is capable of recognising needs, seeking out supports, and then applying those at home and advocating across other environments is important.

I think what I’m saying is that even without a diagnosis, it is still necessary to understand what it actually means to be autistic and what it means to be neurotypical.

(and I would add, that it is important to distinguish what isn’t explained by autism as there are nearly always comorbities which may require treatment)

Can you explain how you think the child would benefit from not being diagnosed? (As distinct from how it might disadvantage them)

There are a very wide range of support needs, some may be things that a supportive school can do whether or not there is a diagnosis, as the waiting list for NHS autism assessments is very long so many schools provide support based on need rather than diagnosis. And some support needs will not be met by the school whether or not there is a diagnosis, which is one reason why do many autistic children are home educated. Again it very much depends on the child, the school, the overall circumstances, and it's worth considering all factors.

This is a slightly different situation, but I’ll share anyway.

As a child I was very different, I did not speak (to anyone) until I was 5. The health visitor told my mother I was “backwards” that I wouldn’t cope at school and that I should see various professionals and have speech and language support. She refused and sent me to school.

school to me was terrifying, I couldn’t communicate / wouldn’t communicate and got by with pointing and gestures. Eventually I started speaking and they discovered I was academically very able.

No support was ever offered and I made it through school. I was regularly unwell and off school for many different reasons, I remember being told off by a doctor for having too many tummy aches. In secondary school I missed large chunks due to viruses and just not being able to get out of bed. Life continued to feel very difficult, I considered ending my life and I self harmed in secret.

would my life have been different if I was born now or my mum had accepted the support? Of course it would. Would it have been better? No one will ever know.

I'm not sure I agree with this, although my evidence is largely anecdotal.

I think with adults there's normally a trigger that leads to then getting assessed. I haven't met anyone who woke up one morning and just randomly decided 'hey I wonder if I'm autistic, I know I'll push to be on the assessment pathway (or pay ££££)'. In reality something happens that means that a person who thinks they've always been coping fine recognises that they aren't actually copying fine. That could be because a third party suggests it (and that usually comes with there being a discussion with that third party about how they are struggling with something), or because something happens to make them recognise that actually they're not coping. For me, from my perspective I was coping fine and had been for 30 years, with a background special interest of whether I would meet the diagnostic criteria for autism but no real desire to put myself through an assessment. Until multiple different stressors combined together, and I suddenly could not kid myself or anyone around me that I was coping that actually I wasn't coping. Even then it took me about six months to recognise that this was likely fully blown autistic burnout rather than something I was going to snap out of.

Everyone I know who was diagnosed as an adult has a similar story. I acknowledge there will be some people who do just go through assessment out of interest, and I can see an argument that in that situation there's a debate over whether it's worthwhile. But I think the group of people who decide not to be assessed is broadly self selecting and actually are more likely not to be diagnosed if they were assessed (although some will be autistic of course). Ultimately, if you've chosen not to be assessed you don't know if you're autistic. It's then very difficult for you to definitively state that not being assessed is a good thing - it might have been for you, but maybe that's because you're not actually autistic. The real measure is whether anyone regrets choosing to be assessed. I haven't met anyone who has regretted that.

I've also seen lots of people on this saying that having an autism diagnosis creates barriers to immigration (eg to Australia) and to some careers. Can anyone share more details on this as I can't find anything online to confirm that. Eg for AU, it's not the diagnosis that's the issue, but the extent to which you having autism will lead to what AU government considers too much of a cost to the state. That's either the case or it's not - an autism diagnosis doesn't impact the level of support someone actually needs. The only way to get around that is to fake that you don't need the support - which is another issue entirely.

Similarly on jobs - what job are you prohibited from doing just because of an autism diagnosis? There are some jobs (eg police) where you'd have to report it, but these are the types of role where there needs to be a suitability assessment anyway. Again the issue isn't the diagnosis but whether in reality the impact of your autism means you're not suitable for the role. Unless you plan to hide issues, these will cond out regardless of diagnosis. If you plan to hide issues, not declaring an autism diagnosis is not the big thing you need to worry about, particularly if private!

I acknowledge it's a personal choice, and of course an adult can decide not to pursue a diagnosis. I have people in my own family who haven't for various reasons. But the fact that the people who think they're autistic choose not to be assessed isn't strong evidence to dispute other people saying there have been benefits to assessment.

I only know the people I've talked to. Do you know autistic adults who have been assessed, received a diagnosis and wished they hadn't been assessed?

Exactly.

Under the DSM 5, for autism diagnosis, once you have been found to have met the diagnostic criteria in terms of traits, you then have to show that the "symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning".

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/assessment-and-diagnosis/criteria-and-tools-used-in-an-autism-assessment#DSM-5%20criteria%20for%20autism

My personal view is that if my child is displaying signs of a neurodevelopmental disorder, such that they are causing 'significant impairment' in various aspects of their life, then they have a right to be assessed and to understand what that means for them.

Yes, you could wait until those 'symptoms' cause them more issues in the future but then you're faced with a 3+ year NHS waiting list and having to try and mitigate against the potential negative impact of them being undiagnosed during that time.

I would rather take the risk on them not being able to emigrate to Australia in the future as against the risk of harm they could suffer by not understanding why they are different. I think they have a right to understand themselves first and foremost.

Schools not picking up on autism is hugely common. Kids can often mask successfully somewhat during primary and then fall to pieces when they can’t at secondary. The fallout and impact can be huge. There can be trauma from years of autism not being identified and handled correctly.

It is selfish to withdraw knowledge and extend suffering for a parents idea of the future. The kid clearly needs support and more information now - not when life has become intolerable and parents then have no choice.

Just to add to this, most of the autistic women I know have been assessed after their children were diagnosed. I'm awaiting assessment after researching autism when one of my children was struggling and it was an absolute lightbulb moment for me - an explanation of how I've always felt but never understood why. Given that there appears to be some genetic component to autism, it's not surprising that this happens.

Agreed - I'm an unusual case in that I went first. Took me over 10 years to get from initially identifying I might be, to being in a bad enough position to actually get up the courage to go through the assessment. If I was younger I think a similar 'bad patch' I had at 21 would have led to someone suggesting assessment (in hindsight I was a textbook), but of course autism always used to be something only boys had.

Yes I was diagnosed after mine. Fast tracked because it was thought it would help me help my kids and handle the support I need to do. It does hugely. I’m still processing the anger over missed years, destructive coping mechanisms and mis handling basically learning that I was not naughty child but a misunderstood child.

I think you may be misunderstanding slightly. I wasn't saying that people who are diagnosed as adults have had no problems previously, ideas responding to a previous poster who suggested that if a child who may have autism is not diagnosed with autism than they will end up having a medical record which shows mental health struggles or conditions, which would also create the same issues in the future if they wished to emigrate or acquire health insurance etc. I was saying that I know people who weren't diagnosed till adulthood, who may well have had some difficulties as children but did not have a mental health diagnosis. I wasn't saying it's always wrong to pursue a diagnosis atall, just that's like everything there are pros and cons and it's best to consider all aspects before making a decision cases such as the one the OP talks about where various schools etc did not think it worth referring for a diagnosis so one would only be potentially given if the parents pushed for it or went privately. Some other posters seem to be saying that it is selfish and wrong to not do everything possible to get a diagnosis, I'm just saying it depends on the situation. I've never disputed anyone saying a diagnosis benefited them personally, just offered the perspective that in some cases there can be benefits until waiting till the child is older and able to decide for themselves, and it's worth thinking about before deciding.

@ytemussel And I know a few adults who chose to get a diagnosis in adulthood, and a couple more who believe themselves to be autistic autistic but decided on balance not to pursue a diagnosis.

I agree that some support is often available in schools with or without a diagnosis - for example counselling.

However, only a formal diagnosis will give you extra time in exams and will be a proper starting point for a full understanding of support needs. (Although of course an autism diagnosis does not automatically warrant extra exam time).

DC2 had all sorts of difficulties in school due to undiagnosed dyslexia, autism and ADHD. The teachers were very kind and tried their best to help but honestly their help was not particularly effective because it was a stab in the dark. The school counsellor was also very kind and tried their best to help and even gave DC2 screeners for all the above neurodivergent conditions and they all came up as neurotypical, so that further muddied the waters and made it harder for me and the teachers to support DC2.

DC2 is now at uni, got some simple day-to-day adjustments plus extra exam time and is happy and successful. With all that in place, they no longer need the services of a counsellor.

I think diagnosis is importantly for many reasons, but a diagnosis is not required for extra time in exams, and a diagnosis alone doesn’t make someone eligible for exam time.