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.

Your ignorance is clear.

Mother of autistic children here, with/without EHCPs and all need differing significant support. I myself was diagnosed in my 50s.There are not 2 ends of a spectrum it’s in no way as clear cut as that and there is a high threshold to reach diagnosis eg significant impact on life (myself included however annoying that is for you) so mild autism as labelled by the op is completely incorrect.

It’s unlikely that they will change the diagnosis or names as autism is almost impossible to categorise and the threshold is high anyway. Learning disabilities are also separate to autism .

When a young person who has been given a diagnosis grows up, there are potentially real and significant problems this could create.

And the same applies to multiple other conditions, but that's not a reason to withhold diagnosis and support

Well considering the help that diagnosis brings for autism and adhd not diagnosing is more likely to be a barrier than diagnosing. Fat lot of good being diagnosis free if you’re stuck in hospital, not progressing with treatment, not getting qualifications you could get, engaging in risky behaviours or dead.

Also countries don’t stop disabled people from working in their countries it’s more something that is scrutinised with permanent residency and it is only an issue if there is significant cost to the state / health system which you aren’t going to get away from diagnosis or no diagnosis. Need is need. If you’ve had better treatment and education post diagnosis you’re more likely to have qualifications and less likely to be a drain on health systems

Well of course you would disagree as you’re the demographic that I’m referring to.

It’s not ignorant to point of the level of need and support are absolutely significantly different, hence why they have different levels.

You don’t know my level of need or the level of need re my children.

And you referred to agreeing with the op. Her term “mild autism”is completely incorrect. There is no mild autism.

Correct but that’s why I’m surprised that you took my comments out of the context in which they were meant. If your child needs an EHCP, I assume they have significant care needs and require significant support to the point they may not live independently and that will be a significant stress and worry to you

It is already known that on average undiagnosed autism or other ND conditions such as ADHD, create many potential adverse outcomes in health, career, drug addiction and even criminality. Note the ‘on average’.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10498662/

What countries are you thinking of that would reject a visa due to an autism diagnosis? While I accept it is a possibility, I suspect that it is uncommon because people with diagnosed autism are not usually a massive burden on the health system.

It is such a disadvantage to be undiagnosed (as explained in above link and also in my post) that personally I would be prepared to accept the chance that there might be a handful of countries that would not allow me to work (and I have lived and worked in several other countries but before my diagnosis so the ability to work abroad was very important to me).

See that’s where your ignorance is clear. Having an EHCP does not mean the recipient has significant care needs. That said my child has significant care / support needs and has had supportive living but independent living being out of the question is impossible to say at this stage. Her goal is to live independently. She is hoping to get level 3 qualifications. By your logic should she reach that her goal that will make her autism “mild “. One of her siblings lives independently however he is having a huge amount of significant support without which I’m pretty sure he’d be no longer with us - again going by your logic that makes his autism mild. I have other children. All of us have had our lives significantly impacted by autism, horrifically so ,none of us have mild autism.

If I had been a child now my autism would not have been over looked in childhood.The fact the system was male focused and I got overlooked does not make my autism (or that of any other woman like me) “mild” or less worthy.

Anybody who’d seen what I’ve seen in hospitals or heard the stories I have from autistic women and girls ( many late diagnosed)when taking part in research would never in a million years be so ableist or ignorant as to use the word mild when discussing autism.

Sorry, but am I living in Airstrip 1? Are we changing the definitions of words to entirely suit ourselves?

Manifestly, some sensory issues with noise in the school corridor/wearing school uniform/eating particular foods ARE (to use a very common English word) 'milder' than situations experienced by totally non-verbal children, with complete incontinence, or extreme violent behaviours, or who need to live away from their families or who will never be able to look after themselves. Even if those concerns lead to mental health concerns later, they still aren't in and of themselves, the same, and they need separate treatment. What's the problem with saying this?

If I compare eczema to Stage 3 melanoma, I can also say that the first is a 'milder' skin condition. That's not me saying it's a problem or that it shouldn't be treated. But let's not pretend they're the same thing. We need to treat them separately; differently. This isn't where this thread started, but I am shocked by the emotive responses (which I had expected) asking me to redefine words in the English language and telling me that black is actually white.

Ah now we get down to the reason for the op. She has an axe to grind.

A few sensory issues is NOT going to get you an autism diagnosis.

My db is high-functioning ND but as we grew up in the 80s/90s it was not even a consideration.

Having a label or diagnosis would not have changed anything for him. He has done very well in life.

But now I see the ND traits, it helps me as his sister to interpret behaviours that I would otherwise find difficult or hurtful. It helped me to understand his “odd” reactions when our parents passed away, for example. The challenges in his adult life have been in some ways harder than the ones in a very structured and sheltered childhood.

Nowadays I think my kids need the diagnosis so they get the support they need. School is very different to the 80s and in many ways worse/more rigid despite a lot more focus on and understanding of SEN. My db could not have coped in a modern classroom - he was actually home-schooled a lot at primary level (masked by the excuse of asthma attacks which I suspect were not as severe as my mum made out!). He missed a lot of secondary school too, but he was academically successful so no one cared. That wouldn’t work now - his poor attendance would be a big problem.

So I think a diagnosis is helpful because it puts you on a pathway to access support if you need it. And you cannot compare education “now” to education in the past.

Have I posted on this thread ...perhaps I did, might have advised you to just do life and therapies if needed privately...private is best. If labels are bothering you, am I correct ??

However depends what happens in the future. Let's say you fund their adult lives as well but they are an only child and you all die. You need figure out are they going to handle a massive inheritance, because vulnerable people with money will be easily singled out by " well meaning " partners ....that's what you need, the long distance view my dear. It's easy now when you just feed them, dress and send them out to play but do keep track record of their abilities as they grow, support accordingly with therapies and see how they launch or fail to do so ...

If you are rich, you don't need begging the NHS for help but if you aren't sure about your future finance, I say, use the NHS, it's all about money....not even how we feel...

Edited for spelling, grammar and expanding the same context

See you’re putting words in to my mouth. I never said the world mild, I said there are significant differences between the 3 levels which there absolutely are. There are adults that can’t communicate and they need 1:1 support with no possible way of being independent, eve!

How anyone can say the above situation is the same level as an otherwise functional adult, who is married, has a good job and can bring up kids is delusional. It’s absolutely acknowledged by professionals and that’s what the ‘level’s’ are used for to distinguish.

You keep saying about being ignorant however -

1- You have no idea of my circumstances

2- You seem to be conflating different words and meanings in various contexts. Your argument is ‘mild’ must mean it’s not a problem, but that’s not what I’m saying.

3- EHCP’s aren’t generally handed out for fun. There has to be significant need so I’m not sure where you’re getting the idea that they don’t need to have significant needs to get one? They do.

Having a diagnosis of Autism doesn’t mean you’ll get an EHCP either and quite right as not everyone would require or need one. The opposite is also true, you don’t need a
diagnose of anything to get an EHCP, it’s always based on need and a significant need at that.

Again, I’m surprised you’re arguing against what I’m saying given that you have children with what seem like significant needs. It seems to me you’ve homed in on me saying ‘functional adults who hold down jobs, homes, have kids etc and get a diagnosis in middle age’ and you’ve taken offence to that as it describes you, but you’re spectacularly missing the point that my main point is those that won’t be able to have a normal life without the support. So no, of course I don’t think your children would be considered ‘mildly’ affected. If they can’t live independently then of course they are significantly affected

By calling it "mild" you're just minimising our struggles. Part of the diagnostic process is showing that it does impact daily life

I asked to be assessed because I was struggling. I'm sure my teenage years with the self harm which went into my early 20s would have been different if I'd been diagnosed sooner

You wouldn't get a diagnosis of Autism just because of sensory issues. My sensitivity to noise and light aren't related to my Autism. My sensitivity to noise started off as blocked ears and my sensitivity to light is related to my visual impairment.

There was a thread on here a while ago from a parent of a high functioning autistic teen, she'd wished he was lower functioning and many agreed with her. Mental health can be a lot worse with those who are higher functioning and realise their differences and feel the need to fit in with social norms. I work with people with autism and learning disabilities. Some of the ones with severe learning disabilities are living very happy lives. Some of the high functioning are self-harming and attempting suicide.
I think the issue with 'mild' is that it's not that the symptoms are mild, they are different. You are mistaking high functioning for mild. Mild indicates that the person is doing 'better' than the lower functioning but that isn't true. What is happening is that the low functioning don't fit society expectations eg they're not working, they're not communicating the way the rest of us do, they're not passing the tests in the education system. However, they can have really positive mental health and be enjoying life, which if you look at it from a personal level the symptoms for them personally are mild as they are happy as they are. On the other hand, a high functioning person could be intelligent and doing well in school/employment but they may be feeling overwhelmed most of the time and feeling they don't belong, they could be self-harming every night and feeling anxious with every social interaction, so to society they look 'mild' but for them personally the symptoms are severe.

Manifestly, some sensory issues with noise in the school corridor/wearing school uniform/eating particular foods ARE (to use a very common English word) 'milder' than situations experienced by totally non-verbal children, with complete incontinence, or extreme violent behaviours, or who need to live away from their families or who will never be able to look after themselves. Even if those concerns lead to mental health concerns later, they still aren't in and of themselves, the same, and they need separate treatment. What's the problem with saying this?

You're conveniently ignoring the fact that many people with (for want of a better word) profound autism often have other conditions as well, though.

Your insistence of using the word "mild" when multiple people have explained to you why it's offensive is inappropriate and goady.

1. There are no levels of autism in the Uk. Some diagnoses refer to the US DSM that does not have an official status in the uk. DSM simply refers to support needs with a caveat that they are just a snap shot and to be used as a starting point, that need can change at all levels.

2. EHCPs aren’t handed out for fun but many are just given for educational need.

What you said

” There was a woman recently who (low and behold) had her diagnosis in her late 30’s” as if that dismisses her autism even though late diagnosis is not her fault, does not devalue her autism at all and is NOT an indication of “mild”autism.

Your inference and that of the op that anybody who doesn’t have a level 3 support need AND a learning disability has “mild” autism is incorrect. All autism diagnoses have a “significant” impact on life and many without a learning disability will in all likelihood have level 1,2 or 3 support needs throughout life.So it is impossible to categorise or dismiss the diagnosis of anybody diagnosed with autism.

I think it's Australia, New Zealand and Canada. Sometimes the USA.

Really, as an autistic person, I'd rather not go to these countries anyway!

Why work off of what ifs, what if they want to live here, what if they want this job, what if they marry someone from these countries, when the material reality infront of you is a young person struggling already, enough to warrant the consideration of the diagnostic pathway, when mental health, and safety statistics are already so heavily weighed against us.

We all have limitations we have to accept and if the trade off for having recognised support needs and having immediate support put in place is that you can't move to those countries, then so what.

Canada has changed their criteria to make it easier for all disabled people to apply. With the other two it appears to be dependent on how much you cost the state which is likely to be more if you’ve had even worse health and education support/outcomes due to lack of diagnoses. Have to say that wouldn’t make me want to go to either with ND as who knows what needs will be further down the line and a stance like that doesn’t indicate good support even for those with permanent residency .The USA is nigh on impossible for everybody even before Trump.

When you have a child with autism you have to accept that life as you thought it has changed and you have the child you have. Their needs as a child trump some built up view a parent may have of their future life .

There is a difference between the levels of support needed though and nothing wrong with pointing this fact out. They do absolutely use levels in the UK, whether that’s true for all trusts is a different story, but it’s not necessarily needed in situations where it’s clearly evident who is what level. Somethings don’t need to be said.

My example would not be considered level 3 and those who do have level 3 would not be classed as having level one.

You’re also using the label learning disability suggesting those with level 3 autism must have LD but that’s not true. Just because they can’t communicate it doenst mean their IQ is lower, which seems to be what you’re suggesting

Well put.

I'll repeat again for anyone who hasn't seen it.

3 in 10 women will experience sexual assault at some point in their life, if you're autistic that becomes 9 in 10 women. 90% of autistic women will be sexually assaulted. Often more than once.

Intellectually capable autistic women are 8x more likely to kill themselves. (Professor Happé, 2018 population study published in Molecular Autism)

The risk for intelligent men was also high but the gap between men and women was still significantly pronounced.

Suicide attempts are 6-7x more likely if you're autistic.

Risks are increased due to masking, bullying, sensory overload, social exclusion and lack of appropriate support.

If you're autistic you're significantly more likely to get in trouble with the law. Can be attributed to but least likely in the list: a need to fit in and getting in with the wrong crowd, but most prominently a lack of social understanding and reasonable adjustments and accomodations. People have been arrested for having a significant moment of neurological distress with no attempts of de-escalation.

If you're autistic you're significantly more likely to experience at least 1 comorbid mental health condition, however, often more. Some studies show 3-4 x more likely to have another mental health condition than the general population.

Autistic youth are 5-10x more likely to be admitted to psychiatric inpatients (Croen et al. 2006, Siegel & Gabriels, McMaughan et al. 2023), autistic children have longers stays.

In 2012, the Gabriels study showed that between the ages of 4-20, 70% of admissions did not have an intellectual disability.

Autistic adults have elevated admissions too.

From NHS data 2022-2023 around 2000 autistic adults were detained in mental health hospitals in England. Hospitals are reluctant to discharge if there's a history of "challenging behaviour" even if the inpatient care isn't therapeutic. Families are often ignored or blamed when concerns are raised. 60% of those had been in inpatient care for over a year. (Source: NHS Digital, “Learning Disability and Autism Statistics"). During hospital inpatient stays many patients experience what we call skill regression. This can be in communication, daily living skills, cognitive/academic skills, and behavioural independence.

Skill regression can happen even without inpatient treatment and is usually a result of trauma, or in inpatient cases, even medication.

This isn't to say that those with lower IQ or intellectual disabilities have it easy too, they often have longer stays due to poor discharge pathways, but they do have less suicide attempts and there is often poor community support for them too. This is a lack of resources, and needs to be addressed but as always disabilities usually come at the bottom of the pile with the government.

I'm simply stating that "mild" isn't really a great way to describe those you perceive to be higher functioning. Being able to function relies heavily on support and understanding, which isn't consistent.

This!!!

Would like to point out that bar breaking the law nearly all my kids had experienced pretty much all of this before the age of 18.

What axe? Genuinely! I'm trying to work out what the right thing to do is, having been given such massively conflicting advice (including on this thread). I can't imagine any other reason to post - people disagree on stuff all the time without there being ulterior motives. But on this topic (probably because kids with SEN is so emotive), people take leave of their senses.

What about if I said 'my son says he's a girl and now a school/psychological professional/society agrees with him, he's feeling so much better, understands himself and is able to deal with his anxiety' - would that make it true for Mumsnet? For the record, I absolutely don't deny that there is something called ASD - I'm just wondering whether a diagnosis is always helpful and right in the traits and patterns that some people might call (rightly or wrongly) 'mild', and this thread has given me conflicting answers on that. It's as simple as that - no conspiracy.

You've got conflicting answers because you aren't being straight forward with your communication. Just be straight about what the symptoms of this child are and what your thoughts and the thoughts of the child and those closest to them are. That way you will get straight answers. Your posting long winding posts alluding to different things.