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

I think there is a difference between having a condition which is managed to a point you wouldn’t even know they had it and not having that condition at all.

I wouldn’t want to be diagnosed with anything I didn’t have.

The nhs will know and treat him differently and not in a good way any form of insurance he gets will skyrocket. I have bpd on my medical records which I don't agree with (not easy to get it taken off) and I don't tell anyone about it in my personal life but it definitely does negatively impact medical appointments and cost of insurance. Potentially other things to like visas although i have no experience with this.

He probably will. He has been diagnosed as a child. That is a formal diagnosis on his medical record. He can choose not to declare it. But risks come with that.
He is either autistic or he isn’t . I didn’t think it was something you grew out of.
You have it or you don’t. You don’t stop showing signs of it.
Once diagnosed with it, that is that.

Ok. But if he has no signs of being autistic as he grows he doesn’t need to tell anyone about it does he?

The difference is that asthma is what I would call a socially acceptable condition. One people do not have a great deal of prejudice about.
Anything to do with the brain or neurology forget it.

I do know.

Wrong quote attached. Sorry !

So why get him assessed at all if he needs no support and you feel he doesn't have ASD??

Because some of us are on a 5 year wait list to get an appointment for an assessment.

No, I wouldn't. I was pretty sure by early childhood both my DC were autistic but as they masked well at school I didn't think I would get enough information from them for an assessment. By the pre-teen/early teens years their difficulties had ramped up so much that they were both assessed and diagnosed. The onset of puberty can really magnify the difficulties of some autistic people so I wouldn't get him reassessed at age 7. Secondary school has been an awful experience.

I have two boys like yours. As the one who sounds like you son has progressed through school his needs become more and more apparent.

Just leave it and see.

DS2 is asthmatic. For great chunks of time he doesn't need to use inhalers (but we keep them close by). We know what his triggers are to start getting the preventer into his system as they tend to be seasonal, but he doesn't need it in his system all year.

He's asthmatic when he's symptomatic and when he isn't symptomatic.

He's also autistic. This wasn't particularly obvious to me as he was quite young when his more obviously autistic brother was diagnosed and our family routines are more autistic friendly with fewer triggers to stir up a failiure to cope than DS1 had so his difficulties were masked more but the diagnosis is still helpful in recognising that he's struggling, and how to manage that appropriately.

DS1's difficulties were more obvious resulting in diagnosis at a younger age. He hasn't required many interventions at school and just the awareness goes a long way, mainly in the odd time that something goes awry, he needs a more pastoral approach as traditional discipline makes him spiral and is counterproductive. The main coping system is at home with things like accepting that he can rarely chat within 2 hours of getting in because he's burned out.

They may not need regular formal accomodations in school, but their diagnoses are very valuable in helping them cope and meet their potential there. Just like being able to phone up and get a new inhaler on prescription before the weather turns autumnal after a symptomless summer. Neither condition went away, it was just less obvious.

I've worked in schools for 20+ years. Other than where the entry bar has changed with inclusion and pressure on specialist provision, there isn't a big shift in the "personality" range in school, we're just better off at identifying ND traits and supporting them. There is less suffering in silence than there was amongst my peer group (mid-40s) several of whom have had late diagnosis following issues in adulthood, and many of whom had strong ND traits that likely would be recognised now. It's the recognition, understanding and support that's changed and that is a positive thing and much healthier than it all being brushed under the carpet like it used to be.

Mumsnet only provides supportive comments to autistic children - once they hit adulthood or marry someone the criticism starts and they’re no longer allowed to show their autism.

I'll add that he would have to declare it if he ever wants to work abroad, too, when he grows up. He may not get a work visa/residence or he would need to spend $$$$$ extra on health insurance. Many mumsnetters here are very short-sighted and see nothing beyond A-levels.

I am afraid I disagree with that. About the label not meaning anything.

I have had one since the age of 11. Nothing I can do about it. I never saw myself as disabled. And felt I could do most things in life. It took me so very long to realise not everyone saw me in quite the way I saw myself.

It will be something he has to declare to all and sundry from insurance going on holiday, to job applications. Some labels if you can avoid having them, do.

Not everywhere is receptive and non discriminatory. You will find friendly comments on Mumsnet. But Mumsnet is not entirely reflective of the world in general.

If you can get rid of the label, if there is no benefit for him to have it. Do.

I would wonder whether you’ve automatically parented him as though he’s autistic due to his brother and therefore he doesn’t really seem to need much support because you’re already providing it.

I was the same when I was young - I was raised by an autistic father who automatically adapted his parenting to suit me and therefore I didn’t actually get a diagnosis until I was in my thirties.

You can’t get diagnoses removed from your nhs records (or your child’s nhs records) just because you believe that you/your child no longer have the condition.

if you could, most people with mental illness would get the diagnoses removed - they’d say to the doctor I’m not ill, the CIA really are tracking me!

You can request that information that is factually inaccurate is removed - see here for example
https://digital.nhs.uk/data-and-information/information-governance/guidance/amending-patient-and-service-user-records

but the nhs will not remove clinical records and the assessment and reports made will stay in the system.

you have very little chance of challenging an autism diagnosis as factually inaccurate so there is very little chance of this being removed from your child’s records.

There's a huge difference between a 3 year old and 5 year old. The assesments and input would need to be different. As your youngest was at school they would have a lot of evidence and information from there alone.

Ds1 was also diagnosed at 3 years, for him we had SALT, Ed Psych, Portage, attendance to the hospital nursery and SEN assesment centre. At 3 years and under they were working out IF it was ASD, toddlerism, delay or something else.

Ds2 is 7 years, his teachers picked up on his needs last year, they put the evidence together and all I had was a questionnaire and appointment to speak over his development and difficulties with a pediatrician.

The society in this country has gone mad with regard to (early) diagnosis, hence results like this. Wasting the taxpayer's money. Look it up - false diagnosis can actually make things worse for your child.
I don't understand all this 'it may get handy in the future'. It's natural that expectations increase as kids grow and go to a secondary. Instead of making life easier for them and seeking accommodations, we should be making our kids more resilient and prepare for real life. That's why we have so many NEETs.
The SEN/SEMH label was also pushed on my kid since he barely turned 5. Because he is a shy kid and didn't want to write, just wanted to play. He cried when they forced him to write. Somehow most of the kids in the world don't write at that age and that is considered normal. But in England this is a special need. They went to such lengths as to suggest to the external professionals he might be autistic. I had to listen for the whole of year 1 that he is 'dysregulated' (cried) and 'shuts down' (refuse to work). I dreaded the end of Y1 report. 38/40 phonics screening, all subjects working as expected. No concerns. But maybe we can put him on SEN register retrospectively, because he has had the Outreach involvement (who just said to lower demands and closed the case after 3 months)? Utter madness and such a waste of taxpayer's money.

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.

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.

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.

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.

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?

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

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

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.