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.

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.

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.

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.

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.

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'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.

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.

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.

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.

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.

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.

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 !

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

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.

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.

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.

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.

Apologies, we keep having little power cuts and so my signal is intermittent!

But OP clearly had suspicions or she wouldn’t have allowed him to go through the process of diagnosis in the first place.

There's a key word there.

Currently.

This doesn't mean he isn't autistic and he won't need some support in the future.

As it stands you are well placed for getting support later on.

My son is in a similar position but I can definitely see how he is likely to need support later in high school.

They will not have diagnosed him for no reason.

First sensible post on here

WTAF! You advocate hiding something crucial and masking of its existence for a highly unlikely potential work visa. Autism brings a huge likelihood of MH and life struggles. A diagnosis helps and is far more worthy than a visa. Frankly who would want to live in a country that doesn’t want somebody because of autism if you’re autistic? Many countries don’t care anyway.

It is a lifelong condition, however of course it affects people differently depending on whether they are in a working environment/job that suits them, whether they are experiencing events that are causing anxiety etc. I would ask yourself if you have personal concerns over him being ‘labelled,’ because a parent’s own feelings can colour their perception, we had a hard time coming to terms with our son’s diagnosis. I wouldn’t request a reassessment given that it would put you on a very long list alongside other children to whom it could be more significant. A diagnosis doesn’t generally need to be disclosed if he doesn’t want it to be, so is unlikely to affect him growing up.

I think a diagnosis helps with coping strategies independently even if you don't need formal support early on. This doesn't mean you don't need support. It doesn't mean you aren't autistic and it doesn't massively impact your life. It just means you are currently coping.

Waiting until you have a burnout situation isn't helpful because you don't get the support you need immediately.

The whole point is prevention of a crisis situation by earlier appropriate intervention.

You’re talking nonsense.

For most types of insurance—such as life, travel, or income protection—an autistic person can secure standard terms if they are independent and working. However, pricing or policy conditions can change depending on individual support needs or co-occurring medical conditions.

Autism is not BPD. NHS staff have training as regards autism to give autistic people better care. They still have a long way to go but a diagnosis can be hugely beneficial. My dd had her care adjusted for autism which brought massive benefits.