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

[sleepertraintomorrow26]

My son is 7 and was diagnosed with ASD almost two years ago. His assessment consisted of an appointment at home, questionnaires completed by both school and home, and a SALT (speech and language therapist) visit to observe him at school.

After that, I was asked to attend an appointment with the doctor without my son, which I did. During that appointment, he was formally diagnosed with ASD.

My older son was diagnosed at the age of 3, but his assessment was much more thorough. He had lots of different assessments and testing, was observed in several different settings, and also had a medical examination. To be fair, my older son is quite severely autistic and is still non-verbal at 11, so I appreciate that his needs were very different.

However, I have been wondering whether it would be possible to have my youngest son reassessed. His school were also quite surprised by his diagnosis, which has made me question whether the original assessment was thorough enough.

Has anyone else been in a similar situation or had their child reassessed after an ASD diagnosis? If so, how did you go about it?

I wrote the post out on chatgpt and asked it to fix grammar etc as im dyslexic.

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.

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.

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

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!

For reference we live in Scotland. Even if he didn't get a diagnosis I would still be unhappy with how the assessment was carried out. He currently is in p3 which i think is year 2 in England. We have alot of professionals involved in my older sons care including respite which includes overnight stays. Naturally the professionals have spent time with all of us in and outside the house. Respite staff especially have spent time during normal day to day stuff inside the house and out in the community. When I mentioned my youngest was also diagnosed with autism they were shocked also.

Saying that im also aware that our life's and house is already autism friendly. We use sign along alot Naturally now and our house is full of timetables and socal stories etc

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.

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?

No

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.

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.

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

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

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.

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.

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

@Priyanka12For exactly what I wrote in my post. He needed emotional support, Year 6-7 transition for him was so difficult. Due to his diagnosis, he was able to access therapy at school and CAMHS much faster than he otherwise would have. He left school with excellent grades, and luckily, because I’d had the foresight (as a school leader myself) to get him diagnosed, he left school feeling more confident and aware of what his challenges are and how to navigate them.

Well.in guessing your son is high functioning. I wouldnt over look his needs because his brothers needs are more severe.

His needs are not being overlooked because his brother. Quite the opposite

Semi update. I have made some progress and I think I will formally ask for him to be reassessed. There is two types of asd assessments my heath board offer. A quick one and a more detailed one where a panel actually makes a decision with all the clinical information collected. I can ask for him to be heard at panel. GP appointment made already.

What health board?

Nhs lothain.

I wasn't told at the time he had the quick and less intense one.

Ds was diagnosed at 3. I went from a pervasive sense of something that I just couldn’t put my finger on, to constantly running through the diagnostic categories and not being able to see him in them.

I was convinced he was misdiagnosed. He had glowing school reports and, the benefit at home of an autistic (as it turned out) mother who had in turn been raised by autistic parents. A lot of “accommodations” were just second nature.

The wheels came off at 11, just in time that we made the critical choice of secondary school correctly, and we’ve needed the whole gamut of support services.

He still isn’t obviously autistic to the untrained eye, but it’s clear to those close to him.

I’m surprised at how lacklustre your diagnosis was but I’d also advise waiting a bit longer before acting. If anything your case will be stronger as he gets older if you’re correct. Keep a diary in the meantime.

His medical records are private and no one needs to know about the diagnosis unless he tells them, so don’t worry about a ‘label’.
What are the reasons he was assessed in the first place? There must have been something you/others saw that promoted an assessment?

What are you hoping to achieve?