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

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.

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?

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

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.

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.

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.

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.

Why was the first assessment needed? Who requested it?

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.

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

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

Read the Age of Diagnosis.

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.

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.

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.

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.

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.

Well.

1. there's a greater chance that he has it given that he has an older sibling with asd.
2. Those with light to moderate support needs can actually get through primary school without any extra help, but then the wheels fall off at secondary.
3. The chances are given you have an older DC with autism that you already use all of the tricks of the trade on him. So you are meeting his needs without the need arising iyswim.

I would absolutely keep the diagnosis for now. It may come in handy later on.

What did they do at the appointment in the clinic with your DS and with you? Ideally they will have used an assessment like the ADOS, basically a form with lots of questions they go through.

I'm a SALT. I have known parents no longer feel the Autism diagnosis fits, but it is still the correct diagnosis, even though the child is doing very well. It is possible that when your child gets older, the diagnosis may be helpful for understanding themselves. Sometimes ASD can impact more in teenage years when socialising becomes more subtle. I would leave things for now. (With the waits for assessment, I imagine it will be hard to get a reassessment.)

If everything carries on as it is, just forget about the diagnosis and don’t disclose it to new activities or schools, jobs, etc. I can’t see that it will do him any harm.

Neither of my ASD children needed extra support at school at 7, by secondary school it was a very different story but also displayed in very different ways.

The assessment your DS had sounds like the standard assessment. Is possible they were testing your other DS for other conditions hence all the additional tests or it was different due to their younger age and lack of language skills.

There are huge waiting lists for assessments, don’t take one of those for a child that has already had one.

There must be reasons why he was assessed in the first place? Presumably these haven't just disappeared?

But it doesn't harm him either. And you are under no obligation to disclose his medical records to anyone.

At 7, autism couldn't have been further from my mind with youngest dd.

By 12 it was a different story. It still wasn't on my radar when I took her to the GP for very low moods and a certain apathy to life.
She went through the ados assessment and it came back clearly as ASD.
She didn't need masses of support at school. They did make a few adaptations for her.

Do you think that because you elder ds sounds like he needs more support that you are minimising your younger son's ASD?
I wouldn't try and get him as misdiagnosed, he may well need support when he gets to high school and the last think you want is spending 2 years getting him a diagnosis.

My son was diagnosed with asd following a similar assessment, he definitely has asd. My son, like yours didn't need additional support until later but looking back he struggled with anxiety prior to diagnosis, he developed tics as a teenager.

Just because his needs aren't evident now, that may change as he grows and you have the diagnosis for him to understand himself better

But at seven his world is highly structured and predictable. To have got that diagnosis at such a young age would suggest that they can see many traits even if he doesn't require support. My children didn't at seven. They didn't even have a diagnosis. Then came the transition to high school. And the wheels came off. My eldest is still struggling six years later. My youngest is only just re-entering formal education at 15.

if by 15 your son is coping admirably with no additional needs, look at re-assessment then. Don't take it away before he may need the extra support the diagnosis gives him.