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.

his appointment was in clinic not home

Sorry, I’m not understanding why you want your son reassessed when he has a diagnosis?

Do you want his diagnosis gone?
What do you think is wrong?
Is he getting the help and support he needs in life?

If both you and school think the diagnosis is wrong then yes, request a reassessment though they may assume you’re in denial (I’m not saying you are but in my experience women tend not to be taken seriously in medical settings!)

What benefit?

In what way are his needs not being met by the current diagnosis? What do you think needs to change?

If his diagnosis is changed, is the school able to provide services your child needs (aka, even if it is not perfect, is keeping it practical)?

Think about all of these issues before acting.

He currently doesn't need any kind of extra support at school or home.

His diagnosis doesn't benefit him whatever. It quite literally is a label on his medical records. My main concern was the actual assessment. If his assessment was like his brothers I would accept it.

But he may do later
So much better to have it now than have to go through the process when he is older
As he isn’t showing signs of there being anything wrong with him now, let him live and let live!
The diagnosis doesn’t benefit him but neither does it negatively affect him

The assessment report should explain the tests used e.g. ados and how he met the criteria. If it doesnt, yanbu. Were you in agreement to have him assessed? Bear in mind autism presents in so many different ways, the core diagnostic criteria are the same and it has a profound impact but the person may not appear 'disabled' or autistic compared to other children

It’s fairly common for an autistic child not to need much or any extra support age 7, but they often do by 12/13 due to expectations increasing. You may already be giving extra support compared to other 7 year olds without realising.

There must have been issues for him to have been assessed.

I would say many/?most autistic people not diagnosed til adulthood would probably have benefited from knowing that about themselves earlier

He's 7. You don't know what support he may need as he reaches his teens and life becomes more complicated.

If he has autism he would still get a diagnosis with a new assessment. So would still gain support when needed.
I'm also aware of another parent who had a similar assessment but his son didn't get a diagnosis. Which they dont believe is right.

If you think he may still get a diagnosis with a new assessment then you are wasting the nhs time and money redoing this. (That's in response to your last post).
Do what you want privately but don't waste NHS resources for no direct benefit.

Who instigated and pursued the first assessment?

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.

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

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.

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

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

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.

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.

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.)

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.