AIBU to ask for my son's ASD diagnosis to be reassessed?

You missed the part where op said he needed emotional support at high school.

I'd leave it for now, high masking children often seem fine until they hit yr 6/high school age. Then the shit hits the fan.

Early diagnosis is better. In our family across 5 autistic children( cousins) the one diagnosed early has had the best outcome. All the later diagnosed ones have struggled massively. I’d have done things a lot differently if I’d know earlier as would their schools. It would have saved the NHS and education sector a lot of money.

It was done 2 years ago, surely if you were unhappy at the time that is when it should have been raised

Having an autism diagnosis does not automatically mean you get extra time in exams. Under guidelines in the UK, extra time is an "access arrangement" granted only if your school or college can show that your condition has a clear, measurable impact on how you take tests and that extra time reflects your normal way of working in the classroom.

Just because you don’t need academic support straight away in the early years doesn’t mean you aren’t struggling at school ,home or elsewhere(to get a diagnosis it needs to have significant impact on life) and won’t need support in school later.

My daughter was missed in primary but the wheels came off in secondary big time and she ended up with an EHCP.

It’s not “for a label” it’s to help you understand why you’ve spent your entire life struggling.

So how was his diagnosis beneficial to him if he didn't need any accommodations? I am struggling why people do this for just a label, unless you mean more time at exams, which is basically cheating, if he truly didn't need anything.

I think people do it primarily for more time and more leniency in GSCS/A-level exams.
I hear all the time that there is no real help from NHS or anyone. The system is apparently broken.

His assessment sounds quite thorough to me. Referral information, visit at home, questionnaires from home and school and an observation in nursery.
did he have an ados assessment?

Of course misdiagnoses happen. However, I think we are generally struggling to understand the point of re-assessment. The existing diagnosis doesn't add anything or takes anything away from this child. Yet, OP seems focused on reassessing without being able to articulate a clear reason. I am not even entirely sure she knows deep down why she needs for him to be assessed again. I fear it is simply because she does not want her child to be autistic (who does!) and maybe effort is better spent on getting some emotional support for herself rather than fixating on reassessment.

I was diagnosed with ADHD as a child in the 1990’s, when I became an adult ADHD wasn’t diagnosed or treated in adults.

Over the next decade or so I decided actually I “just had anxiety” but weirdly anti anxiety medication did nothing, it wasn’t until my child was diagnosed that I realised I was still massively effected and 25 years later I was once again medicated. If you’d have asked me in my 20s or 30s I’d have said my diagnosis was wrong.

If I’d have had consistent treatment my whole life, things would have been much easier!

Is this another thread about mild autism not being real autism and it being over diagnosed?

The issue with autism and other conditions like it, is that there is no definitive way of proving it either way.

I mean, I have a diagnosis but I suspect on my 'good' days I could mask sufficiently so that someone who's never met me before didn't know I was autistic. However, if that person was to see me at home, or after a stressful week, they would get a very different version of me and I would definitely be seen as autistic then.

I think we need to have a wider discussions about those who were diagnosed with autism or ADHD but disagree, or feel were not fully aware of the process/drawbacks and want the diagnosis removed. Is that even possible?

Misdiagnosing have always happened, with all other conditions, there's no reason to pretend it's different with these two. These assessments are not infallible.

So he has fixed thought processes, obsessions, tunnel vision, and lacks safety awareness, but he's absolutely fine and you don't think he has ASD?

Prior to diagnosis, DD’s pre-school refused to make any adjustments for DD unless & until, she was on the diagnosis pathway (waiting list). Ie: they were prepared to discipline her for her vocal stim!

Apologies the interim-assessment was late 2021. This (redacted) letter details how it went - uploading this purely as I’ve been troll hunted before by people saying that interim assessments aren’t a thing!

I’ve been exactly where you were OP following a diagnosis for DD (at age 4) when 2 years later, most of the traits which her diagnosis was based on (as per her diagnosis report) had as good as disappeared! So she did end up having an ‘interim assessment’ after a complaint to PALS (for reasons I won’t go into as they’ll be picked apart on here!).

In the re-assessment, they didn’t have DD in again but did go back into school to observe her in class and then we had another parent meeting (via zoom as was in early 2021, with an NHS child psychologist and a lady from the NHS ASD team who originally diagnosed her) in which they said they saw what I was referring to and had they not previously met her, that they wouldn’t have been able to pick her out from the other kids, based on autistic behaviours alone!

HOWEVER!
They weren’t entirely convinced that they wouldn’t potentially see her again in years to come…Therefore, they would leave it in my court whether I wanted to just leave things as they were with her original diagnosis of ASD and end the reassessment there & then with no changes.
Or, if I wished, they could remove her diagnosis based purely on what they’d observed at school but of course, if I later felt she needed to be assessed again, she would have to start the now even longer process (thanks to COVID backlogs), all over again from the very beginning.
Ultimately, I chose to take on board what they said about not being convinced that she wouldn’t end up seeing them again in the future and chose to stick with her original ASD diagnosis and end the reassessment there & then, with no changes.

This was almost 6 years ago now and boy am I glad I made that decision as now that she’s about to start high school, her ASD is beyond evident and affects her in many, many ways - almost all completely different to those which her diagnosis was based on! In other words, whilst much of my answers in the ORIGINAL parent-only meeting were taken wildly out of context AND most of the behaviours they referenced in the diagnosis report as being their evidence for a diagnosis, were no longer behaviours which she displayed, that ultimately they know what they’re doing! They’re highly experienced experts and can see what we cannot see…..

However, by all means, contact PALS and have the conversation, it won’t harm to have them look at him again. An interim assessment can & does happen; they had forms specifically for it so it’s clearly something that happens!

Good luck

There is nothing wrong with being autistic. I quite enjoy it.

If the label is not interfering with accessing services because he needs a different diagnosis, just leave it. It may help someday.

I was very surprised at the lack of rigour in the assessment process. School had suggested it as teen daughter has a very specific issue that has only affected her at secondary and school said that a diagnosis would lead to her getting some therapy to help. That was incorrect information and we would need to go private. A conversation post assessment with the nurse made me realise that the information they had from school was incorrect. The nurse was very defensive and accused me of not wanting the diagnosis and my response was that I’m not saying that my daughter isn’t autistic but the diagnosis needs to be based on thorough and correct information, which it currently isn’t. To be fair they requested further information from school, but that wasn’t forthcoming. The written report of their conversation with me about her development was about two thirds of a page and had eight errors in. They’d even made up a special interest for her, which amused us. I did have an appointment with a charity about the whole process and the ‘report’ and from that meeting, I do feel it is an unsound diagnosis. With the specific issue she has, we subsequently underwent an incredibly thorough assessment privately with a very detailed report which has been more useful. That separate diagnosis is something she does tell people about as it is more specific to her needs. I do think that there is disparity in the quality of assessments undertaken in this country.

I teach autistic children.

There is research on early diagnosed children who’ve been given so much intervention that by late teens they don’t pass the assessments for autism. They’ve not been “cured” per se, but they’ve learned or developed enough in the areas of cognitive difficulties that were highlighted in the assessment to trigger the assessment that these are no longer a deficit/ difficulty/ difference.

Unfortunately the narrative is that you will always be autistic. With many individuals this is true. With milder cases children can make such huge progress the label is meaningless from a “help” perspective. And they wouldn’t score on an assessment as an adult.

My gut feeling would be to keep the diagnosis through teen years as certainly some children struggle more then. But some children seem to come on in leaps and bounds. Let secondary school know but say at the moment he doesn’t seem to be needing any extra help.

When he’s an adult he can forget the diagnosis. He doesn’t need to tell anyone. Or become de diagnosed. Which is apparently a growing thing.

There are likely many adults who would score highly on an autistic tests but they’re not affected and have learn various coping mechanisms/ carved a life for themselves.

Much of it comes down to whether the individual is struggling with mental health, friendships that affect mental health or can’t access learning due to autism specific comprehension / expressive language difficulties.

Which countries refuse work visas to autistic people capable of independent living/working?

There's a lot of scaremongering about places like Australia, but their restrictions only apply to people whose high support needs require a large amount of government-funded health/social care.

I have ADHD and it has never increased my health insurance, once I've answered the follow up questions to establish I'm not high risk. I can't imagine autism with low support needs massively ramps up costs either.

Im really suprised but also happy to hear how well and supported people with autism are supported and treated within the NHS, workplace and school and how many adjustments are made. I assumed it would be similar to people with mental illness. I have bpd and get treated like crap and next to no services exist. The irony is its often actually autism and people (well women) are misdiagnosed with bpd. I never bothered strongly fighting to get my diagnosis changed as I assumed it would make no difference in the way im treated but it sounds like you guys have a much easier time and get treated great and get lots of support and adjustments. Its definitely something I would of looked into sooner if I had known.