AIBU to wonder whether an autism diagnosis is always that helpful in milder cases?

So sorry, OP, to derail your thread but I think my DD (12, just finished Y7) could have written the first part of your post, @CaramelGhost. No issues at primary school (or none that I noticed, any way, although she’s always been very shy) but she’s really struggled so far at secondary school — not academically or in terms of behaviour, but lots and lots of ‘little’ things (and they’re just the things I see; I’m sure there are lots more I don’t) that together add up to more than ‘just’ shyness… I really want to support her so that she doesn’t burn out or have to worry about a breakdown, and am currently trying to work out the best way of doing that.
I’m so sorry you’ve struggled and really hope you can get support so you don’t have to keep worrying about the possibility of another burn out.

As an analogy - imagine if you had undiagnosed dyslexia and as a result struggled to learn to read and had low self esteem and confidence. You could try to implement strategies to improve your reading, but getting the diagnosis would be transformative as you could get the right strategies put in place and it would improve your self esteem knowing that it wasn't your fault.

When I read "mild", I read hidden.

I didn't join the dots until my daughter was 14 and was wondering did she have a spelling issue.

Suddenly I was going from site to site that was describing random little things that lead me to the realisation.

A huge one was sensory issues like noise sensitivity, and tiredness after socialising.

She has lots of great friends for many years but found socialising exhausting. I do too, so I thought it was very normal.

Not everybody has the perfect language but I do not my daughter has many quirks that tick many boxes, it just took a long time for me to realise they were anything more than her lovely personality.

She has no wish to see anyone and considers it her private business.
She does not want any labels put on her.

I’ve DM’d you

There is no such thing as mild autism.

OP you fail to understand that nobody with autism traits will actually be given a diagnosis unless there is significant distress or difficulty being caused by those traits.

It doesn't matter whether it's a private or NHS diagnosis, they both work to the same criteria and there really is no wriggle room in my experience.

I was told very clearly by a private assessor that unless my son experienced major difficulty in 3 main areas that they can't diagnose him. It's not enough to just be interested in trains and bad at socialising, these traits have to cause real problems in your day to day living.

Nobody has a mild case of autism - you either have it or you don't.

100% this for us.

I could almost have written this post.

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.

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.

This is very true!

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.

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 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.

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 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.

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

"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.

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.

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.

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.

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?

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.