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

My dc had hospital care, long term therapy and medication titration all adjusted for their autism. In the case of my daughter she’d have ended up in inpatient without it. Both children were put on NHs autism dynamic supper register and that opens up a lot of very valuable support. My son has reasonable adjustments in work.I did an NHS support course and have mentioned it during treatments and therapy too. Adjustments and recognition have been hugely helpful.

Whilst support is supposed to be based on needs not diagnosis, if you assess needs thoroughly to know what they actually are and what support to give, it seems churlish to not state the likely cause even if it cant be cured? Does anyone else find out they have breathing problems but not get told if its asthma or copd.

Assessing needs properly is really important in establishing what support to give. Whilst autism cant be cured, there are strategies that can help some autistic people with some aspects. We've made huge progress with emotional regulation by working on receptive communication and sensory processing.

Added to that there are plenty or organisations that do gatekeep services to those with a diagnosis. Especially some schools.

My eldest is ASD we were “obsessed” with a diagnosis because he was on the brink of a mental breakdown age 8.

Since the diagnosis he has moved to a new supportive school with tiny class sizes, we are able to explain in new situations with third parties that he is autistic and what support he needs. Grandparents have also been able to research and learn the how and why of how his brain works and set things up to support him.

He is a bright boy that has a lot to offer the world but without support I believe he would be at risk of suicide.

Thats why.

My son was diagnosed with ASD at 7, much to the SENCO’s surprise, but I knew.
He needed no support at Primary, and no educational support at Secondary. However, he did need emotional support at Secondary; it’s a huge shift for many, and I’m glad he had the diagnosis, it’s the main reason I went forward with it.
I would advise you not to re-asses, it’s likely that it would have the same outcome, and you and he, may be grateful for it in a few years.

Has he moved to key stage 2 yet? That was when the wheels really fell off for us.

I'm afraid I don't understand why everyone is so fixated on autism diagnoses- is there extra help?
Is it because you can access benefits?
Are there support groups?
Wanting to access better schools?
I cannot see how a diagnosis is of much help if it is for a condition for which there is no treatment.
My brother was diagnosesd and it changed nothing, they medicated for his ADHD but it isn't very effective TBH, where the autism is concerned it did not change anything.

Removing the diagnosis from your son's records would not benefit him in the slightest.

Intelligent and capable children are often very difficult to diagnose this young. My DS didn't get diagnosed until age 13. At age 7 the school were still insisting that everything was fine and that the behaviour differences were just immaturity.

If your DS is not actually autistic and needs no extra support or adjustments then a line in medical records saying that he had this diagnosis at a young age will not affect him at all.

If he is autistic then his additional needs may not start manifesting until he is in senior school and starts finding that environment overwhelming.

But to answer your actual question - After my DS's diagnosis assessments, just before they issued the diagnosis they explained to me that this was my last chance to say so if I had any wish to avoid the diagnosis going on-record, because once issued it would not be retracted. If your DS's assessment was via the NHS I do not think you can get it changed. I think it's quite selfish to ask for a reassessment given how long the waitinglists are for an assessment - if your son gets reassessed that is taking a double helping of a very limited resource when there is a huge queue of children waiting for it and desperately needing it.

My 18yo DS didn’t ‘need’ support in primary school. There were some ADD/ASD traits that I noticed but when I raised with the SENDCO in primary they said there was no need and he was exceeding all his targets. Fast forward to GCSE years and he struggled a lot. By then the waiting list was 12 months… then it was 4/5 years!!!! He’s still waiting now. The ADD/ASD traits are more pronounced than ever and I’m sure are a factor in his current position of being NEET.

I think you are naive in thinking your DS can wait until he “needs” an assessment.

But isn’t the whole point that the assessment wasn’t particularly rigorous? It may be the OP seeks a second opinion and they are also of the view he is autistic and fine … but I’d want to be sure.

I didn't realise autistic people got treated so fairly in the nhs. This is certainly not what I've heard but maybe I'm wrong.

There was an And in there!

The and being his diagnosis. which was an appointment with him, a speech and language observation, school form and a parent form and possibly a parent interview (im not clear if the appointment he was diagnosed in was just to inform of the diagnosis or an background interview too.

We dont know if the appointment with him at home was ados or who it was with, But it does look that two professionals saw him in two settings.

That isn’t what has happened. The op listed his diagnosis process.

For me that’s not good enough sorry. ‘Your brother has autism so so do you’ isn’t really reaching the rigour I would expect!

Well clearly it’s very likely he is given the family link and his diagnosis. It can start to present more openly as the safe environment of home can shelter less.

My Son is Autistic, although people wouldn’t generally know on meeting him. He comes across an old soul, so speech patterns are a little old fashioned and has some subtle sensory behaviours.
I don’t generally tell people about his diagnosis, I leave him to tell people if he needs to if he finds himself in a situation where it’s relevant.
For example he went on residential for the first time this year as is very much a home body. His teachers obviously know about his diagnosis so knew to check in with him a little more.
When a person at the theatre of the west end show enquired why he would go to a show and wear noise cancelling headphones and didn’t it ruin the experience for him, he explained that he was very noise sensitive due to his autism and that having the headphones meant that he could enjoy the show without being overloaded.
I wouldn’t worry about getting your son reassessed unless he requires more support and you feel the diagnosis has meant whatever else is going on hasn’t been understood?

I would think the only important question here is ‘is he autistic’?

If he isn’t, then any sort of burnout or support needed is pointless if it’s offered to someone with autism who doesn’t have autism!

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.

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.

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.

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.

First sensible post on here

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.

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

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

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.