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.

This thread is exactly what has gone wrong with society!

It might come in handy? What! This is a diagnosis, a label, not a accessory to getting whatever benefits later.

If OP had written that he's got diagnosed with asthma but didn't think it was correct, would people write the same? If course not!

OP, you are absolutely right to consider a new assessment if you think it was incorrect. Doctors make errors and it sounds that the first one was -shockingly- carried out without due diligence.

Your son deserves the correct medical diagnosis, whether it confirms it or it was indeed made in error.

My DD didn't need extra support at 7. She's 9 now and absolutely needs the reasonable adjustments and support that her diagnosis offers her. The waiting list is years in my area. We got her diagnosis this summer. I'd hold onto it because secondary school will be here before you can blink and it gives him support if he needs it.

Bit you would go to the end of the waiting list for a new assessment, which means your child might not get valuable support in early high school.

If you think there’s support he needs that he isn’t getting, speak to the school. If he doesn’t need any additional support just now, great, that may change as he moves up the school. The different assessment methods will reflect the age and capacity of your respective children at the time of assessment. A non-verbal 3 year old will need different tools to a verbal 5 year old for example.

I think it is absolutely worth pursuing a second diagnosis.

An assessment of autism is only beneficial if the individual is indeed autistic. Otherwise, it is the opposite of beneficial.

Diagnosing a 3 year old is much harder then diagnosing a 7 year old.

It's likely that they needed to jump through a lot more hoops to confirm the diagnosis for your elder child where as your younger child went through a more standard process at a more standard age.

It's a very common thing for the less impacted sibling of another diagnosed child to not be noticed because compared to their siblings they are managing better, the 'glass child' phonomenon.

Pp above are correct. Keep the diagnosis.

You don't need to mention it to him, you don't need to make it part of his 'identity' but if he got it at 7 it's more then likely correct and it will a boon on the future.

Was it a private or NHS clinic you used for the initial diagnosis?

Read the Age of Diagnosis.

If you don't think he's autistic, why did you request an assessment?

I hear what you say, but I wonder if the unpleasantness about former-Asperger’s-style autism is affecting your thoughts.

I don’t discount the possibility this clinic isn’t as rigorous as it could be (DD also had a full day of assessments) but agree with previous posters that many kids in this position bob along in Primary and need more support later down the line.

I would just sit with it until secondary. There’s no rush.

Why was the first assessment needed? Who requested it?

If you want to go privately you can.

but if they say he is not autistic then the diagnosis won’t get removed from his nhs records.

the nhs won’t assess a second time (waste of resources).

for what it’s worth with the rise of techniques to help autistic children (portage, assisted and total communication etc) there is a population of people who were diagnosed autistic very young and would as teens or adults not meet the diagnostic criteria.

the nhs doesn’t remove diagnoses as such, but they do get put into the “past diagnoses” on the records (eg you had an ear infection/covid/sepsis/whatever but you don’t anymore).

they don’t do this with autism because it is lifelong and those who have had intervention and no longer meet the diagnostic criteria are still not neurotypical.

Tbh your younger son's assessment sounds quite standard in terms of process, assuming you were also asked to comment on his early development etc.

Did you get a summary report, explanation of how your younger son meets diagnostic criteria? I'd contact the service which diagnosed him for more details as a first step rather than looking for second opinion.

If you genuinely believe its incorrect I would ask for a reassessment too.

But I assume you feel there is something he needs support with because they normally triage appointments and have very long waiting lists of several years.
Its very important to get the right thing diagnosed in that case.

some doctors give diagnoses way too easy. Consequently there has been a significant rise in the numbers diagnosed with ASD. Lots of these individuals have been overdiagnosed. The diagnosis is completely subjective- it depends on the doctors framework, the parents answers and teachers answers. Yes definitely being him to another doctor and have him reassessed, it might not matter now but it will when he’s older and trying to get to know himself

So you think they are correct that he has ASD?

But they believe he requires a lot less support than you think he does?

Can you give examples?

I understand what you're saying and I have worries about over diagnosis of autism. I do think it's a bit more complex than an asthma diagnosis. If someone started to have trouble breathing after having an asthma diagnosis removed from their record they'd be seeing a health professional the same day and being prescribed an inhaler. If someone has their autism diagnosis removed and starts struggling when they're teenagers and demands increase, which is very common, they will very likely go without the right support for a while which could result in them falling behind in education and/or having worsening mental health. It could take a while before anyone even thinks it could be autism and then a couple of years to get through the assessment process.

My H’s autism assessment as an adult was done via questionnaires with him and me and information about him as a child from family, then a full day assessment in clinic done by two autism specialist psychologists, one doing the assessment and another observing, and they both had to agree on the diagnosis for him to receive it. So the process your youngest went through does not sound that thorough to me.

It may be that your son does have autism but a lower level you are not recognizing due to your eldest’s higher needs. ( My H was not diagnosed till his 50s, it was only after having kids it was apparent to me he had ‘something very wrong’, for want of a better phrase).

You could ask for a reassessment but waiting to see how he develops may be worth doing.

Why did you ask for him be diagnosed in the first place if you didn’t think he was autistic?

To be fair i went through a development pathway as there was clearly a development need. I didnt go in knowing it was autism and asking him to be diagnosed with autism. The pathway could have led elsewhere. I had very thorough assessments from many professionals and the ados, but if it all felt a bit light touch, i would be concerned the right conclusion wasnt reached and having the wrong diagnosis is harmful.

But with OP, cant see why, if her child has no support needs at home or school, the process was started at all

I have 2 autistic ds. They are vastly different.
Our youngest needs significant support. Our eldest needs less support.
Their assessments were done years apart & were different.
Their struggles present very differently & our eldest wasn’t diagnosed until he was almost 12. At 7, he didn’t need much in terms of support & was doing well in school & socially. By 11, he was crashing out of his last year of primary. The older he got, the more obvious it was that he was neurodiverse.

You say there’s no benefit in his diagnosis. Are you worried there’s a detriment?

if he doesn’t need any support now (& I hope this continues), does it hurt him to have this on his records in case support is required in the future?

But arent waitng lists for diagnosis and treatmemt huge? Surely if someone sees mild behavioural issues in their child it would be better to just manage it themselves rather than clog up an slready creaking sysyem? Op has said no support needed for her child.

At the moment. My dc didn’t need support at 7. However they needed a huge amount of high level
support in their teens and now. The diagnosis was crucial to getting care adjusted.

His nursery had concerns regarding his behaviour and communication. He was and still is quite fixed in his thought process and has obsessions with certain things. They asked me to see a GP with him where he was referred. He was actually marked as urgent so was seen within a few months. He was marked as urgent mainly due to his lack of safety awareness. He often and still has tunnel vision and at the time would run onto roads etc.

I do hear what people are saying about his brother. As someone would know he has autism just by looking at me

It's ultimately up to you.
My DD has been assessed and is ASD. She didn't need any support at primary or secondary school - primary noticed she was quirky and secondary was generally very good with anxious/sensitive kids.
She's a young adult now and only has to disclose her diagnosis when she wants to and if it's useful to.
I would say her autism has had a really profound effect on her - especially at high school, which was a really bruising experience. Knowing now why she found it hard has been really empowering for her. It's also been an eye opener for me about how much I missed as she seemed to be understanding/learning pretty well.
One thing that had held her back from communicating with us her struggles was a sense that she was faking it as autistic people seemed 'worse' than she thought she was - I suspect if you have another child with autism that could perhaps also make it harder to see where the child with less support needs is as well. To be fair I have seen this amongst my own friends - an older child with more significant needs or struggles has obscured both the perception of the younger child's issues and sometimes has made the younger probably mask more - and you are probably more adept at parenting ASD children without realising it.

What would be the point of getting his diagnosis looked at? I’d wait until you’ve navigated the teenage years and he gets to 25. It will be clearer then as to what his needs will be.If he wants it looked at he can then do that.