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’m wondering how you’d feel and respond if you paid for the assessment and then were told they are not autistic?

https://amzn.eu/d/27xQAvN this book on reflective parenting is a really helpful book for thinking differently about parenting and the guidance is helpful for all children.

if your child is struggling with emotional dysregulation you could ask school if they have access to mental health support which could offer support with emotional literacy and coping techniques.

You don’t need scho to refer you. Ask your GP for a referal to right to choose.

Cool, I don't buy it for a second. Have fun.

Not autism but DH has been diagnosed with ADHD as an adult, he says the diagnosis was a relief to understand why he found certain things difficult, he was often told at school he was bright and would do well if he could focus more (80s no one did anything about it other than tell him off). He also had a grandparent who told him he wasn't normal.
It's also given him a starting point into what methods might help him for example at work.
FWIW he has 2 degrees and a number of professional qualifications and does a difficult job in a challenging sector so he was getting by, so you might call it mild ADHD. He does find organisation very difficult but has had ADHD coaching which has made a huge difference for him especially at work and that reduces his stress. He's also found that getting up earlier going to the gym first thing helps him focus and conversely he's less tired, wouldn't have done that without the advice post diagnosis

How old is your DC? If he’s young you have no idea what provisions he’ll need. For example my DD is very sensitive to sounds, it didn’t really affect her except when it came to exams she found sounds unbearable and irritating, so much so she couldn’t concentrate. With her diagnosis the school allowed her a smaller venue to sit exams.

This. As well as (as a PP mentioned) having that label ‘officially’ affects your ability to enter certain careers, or to emigrate (because it turns out that the supposedly nice Canada and Australia aren’t enamoured of letting you in).

I have two children. One has a diagnosis. The other copes when in the right environment (which we pay to ensure) and has been told that we are avoiding the official diagnosis but putting in place the accommodations/way of life where possible. When diagnosis will bring no further benefits, but has tangible downsides, it’s not worth pursuing.

My teenage dd has 'mild' asd. She has not been diagnosed, but all of her siblings are autistic and I have no doubt that she is on the spectrum. She is diagnosed dyspraxic and has a low iq so she gets all the resource and assistance she needs at school. We have not had her diagnosed because she would be devastated if she is told she is autistic, absolutely devastated, and as her needs are being met at present a diagnosis would serve no purpose imo.

Don't buy what exactly?

How are you judging the severity of someone's autism? By what you see? And how it effects you?

Because you cant possibly know how it effects the person just because you dont see something?

Genuinely, what do you @Locutus2000 say to posters like this? Are they also making it up?

Oh and this @Locutus2000 - another wind-up?

I think it's interesting that you assume that anyone who disagrees with you or has genuine questions (which are reflected by many other posters here) can't be genuine. Honestly!

The positives hugely outweighs the negatives in my view.

Access to services are supposed to be needs based but often aren't. For example there is an autism youth club here but you need a diagnosis. Disability sports clubs you tend to need a diagnosis. Access to disability social worker needs a diagnosis in my area. There's an autism support teacher in our area but can only access after diagnosis.

Child's own knowledge and understanding of themselves is a massive thing. Kids will always be given labels - that can be e.g. autistic or it can be far more negative (e.g. being called badly behaved or stupid etc). Same goes for support for parents - massive difference in how school treated me once diagnosis was in place.

Excluding other diagnoses. This is something not necessarily understood by the general public. An autism assessment doesn't just look at whether a child meets the criteria for autism, but also if symptoms could be explained by other things e.g. FASD, trauma, sleep or diet affecting behaviour, various genetic issues etc.

Getting the right diagnosis affects how to treat an issue. For example poor sleep with autism could be sensory or low melatonin production. For people with learning difficulties it could be not understanding routines. For kids with ADHD it could be brain not settling at night. For some genetic conditions the body clock is wonky. Can't treat rhe issue easily without understanding the underlying problems.

Acess to benefits like DLA, carers payments etc are based on care needs not diagnosis. But you still need to provide proof of needs from professionals, so assessments or referrals are important.

You raise an important point about private assessments.

I know of an adult who got a diagnosis privately and as a result then got a job in the charity sector where you had to have a disability to be eligible to apply. So a diagnosis did make a difference to this person. If she had gone for a NHS assessment I suspect she would have been waiting an awful long time.

My daughter has an ASD diagnosis. The assessment wasn’t very thorough at all. I’d got her the necessary minimal reasonable adjustments at school which is the only place she has any issues, after a two year battle. School are unaware of the diagnosis. The diagnosis itself isn’t useful other than we might need to use it to get reasonable adjustments in her next setting and as that will be post-16 there isn’t the time to battle.

"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."

The problem is, as our systems / society currently stand, without a diagnosis an autistic child with these needs is very likely to be labelled as naughty and poorly parented (particularly if they're black or poor) and autistic adult women run the risk of being labelled EUPD and never listened to again about anything.

It is easier to get an assessment privately. Its not easier to get a diagnosis privately. The assessment process is the same.

I have 3 DC. ASD crossed my mind with the first one but didn't actively pursue a diagnosis. No 2 had a few traits I thought might be consistent but they were/are very academic and did well at school and socially seemed OK if a little anxious. No 3 had more pronounced traits I noticed when they were a toddler but did ok at primary school but struggled in secondary but then we did have COVID. Anyway eventually we get a diagnosis but mostly because he was seeing an NHS psychologist for other issues and they observed some classic traits.

What I find interesting is his two siblings tell me that they are probably ASD but 'what is the point of a diagnosis '. To my mind their traits are more pronounced now they are older and I would say quite significant. Their grandfather was almost certainly someone with ASD and they struggled more and more as they got older. Again he did extremely well academically but became reclusive in his 60s.

So I guess what I am trying to say what might seem mild now might develop as they get older.

I personally value the diagnosis as does my DS. It has definitely unlocked support at school and on NHS. Also gets extra time in exams which is useful.

So this is my problem - half the posts here say 'it's really difficult to a diagnosis' and then we have others saying 'the assessment wasn't very thorough at all'.

My DD has what you would probably refer to as 'mild' autism. She is in primary school. Very academic, confident, has some lovely friendships. Not on anyone's radar at all.

However she is autistic and since learning more about autism and reading what the SALT found on assessment, it is clear that she does have social communication differences. These aren't an issue as such now because she has a lovely bunch of friends who've known her since nursery and who just accept her as she is. She also has a lot of sensory issues and struggles with change.

We pursued assessment for her for the future. For when she starts secondary school and will undoubtedly struggle with huge crowds of teenagers. Busy corridors. A noisy canteen. A reliance on loops/ear defenders so much more than she does at school now. Navigating new friendships. Realising break time is not for playing but for chatting. Teenage dramas and the nuances of teenage friendships. Different teachers for different subjects. Constant changes during the day. Etc etc.

Her diagnosis means she can seek the adjustments she needs and have an explanation as to why it she wants to provide it.

It means if she feels on the outside of friendships (which we see all of the time at extra curricular activities) then she can understand why this is - because her brain works differently, not because she is weird or únlikeable.

For us, it means she can understand herself and her needs better and in turn, others can (hopefully) as well

I stopped reading as you clearly do not understand the assessment process its not how you describe.
Its not about the diagnosis its about understanding the difference.

I forgot to add another benefit to diagnosis that you might not like....

Autism is highly genetic. Especially the type that comes without severe learning disabilities. The likelihood is that an autistic child has at least one autistic parent. Lots of friends i know only realised they were autisitc or had ADHD during the assessment process for their chidlren. Including me! I'm currently part way through diagnosis process.

I think partly the problem is how you framed your initial post - rather than approaching from the perspective of whether or not to pursue a diagnosis for your own child (which is going be specific to your child, family, school, circumstances etc etc) you added in what comes across as totally unnecessary criticism of those of us who have children with “mild” autism and who have pursued diagnosis because that’s what is right for our own child, family and circumstances.

Add in that you are using terms like “mild autism” which can be seen as offensive and you’ve got people’s backs up.

This is very true!

My DS was diagnosed at 17 having started to suffer burnout and suicidal ideation. He requested the assessment but two years later he tells me he doesn’t think he is Autistic. Looking from the outside he clearly is but it is on the ‘mild’ end of things. The assessment didn’t open any doors and I don’t think we understand him any better for the diagnosis.

I’m another one who really doesn’t like the “mild” language. I’m not a Nando’s chicken.

Autism isn’t a spectrum like the dial on a cooker; it’s more like a light array. Someone autistic who is, for example, highly sensory seeking and relatively solitary but able to read or mimic social cues, may come across to you as “mild”, but their experience of a typical environment/work environment / school may be very challenging even if it isn’t clear for looking at them.