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.

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!

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?

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.

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!

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

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.

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.

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.

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.

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.

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.

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

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.

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.

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 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.

Im really suprised but also happy to hear how well and supported people with autism are supported and treated within the NHS, workplace and school and how many adjustments are made. I assumed it would be similar to people with mental illness. I have bpd and get treated like crap and next to no services exist. The irony is its often actually autism and people (well women) are misdiagnosed with bpd. I never bothered strongly fighting to get my diagnosis changed as I assumed it would make no difference in the way im treated but it sounds like you guys have a much easier time and get treated great and get lots of support and adjustments. Its definitely something I would of looked into sooner if I had known.

Which countries refuse work visas to autistic people capable of independent living/working?

There's a lot of scaremongering about places like Australia, but their restrictions only apply to people whose high support needs require a large amount of government-funded health/social care.

I have ADHD and it has never increased my health insurance, once I've answered the follow up questions to establish I'm not high risk. I can't imagine autism with low support needs massively ramps up costs either.

I teach autistic children.

There is research on early diagnosed children who’ve been given so much intervention that by late teens they don’t pass the assessments for autism. They’ve not been “cured” per se, but they’ve learned or developed enough in the areas of cognitive difficulties that were highlighted in the assessment to trigger the assessment that these are no longer a deficit/ difficulty/ difference.

Unfortunately the narrative is that you will always be autistic. With many individuals this is true. With milder cases children can make such huge progress the label is meaningless from a “help” perspective. And they wouldn’t score on an assessment as an adult.

My gut feeling would be to keep the diagnosis through teen years as certainly some children struggle more then. But some children seem to come on in leaps and bounds. Let secondary school know but say at the moment he doesn’t seem to be needing any extra help.

When he’s an adult he can forget the diagnosis. He doesn’t need to tell anyone. Or become de diagnosed. Which is apparently a growing thing.

There are likely many adults who would score highly on an autistic tests but they’re not affected and have learn various coping mechanisms/ carved a life for themselves.

Much of it comes down to whether the individual is struggling with mental health, friendships that affect mental health or can’t access learning due to autism specific comprehension / expressive language difficulties.

I was very surprised at the lack of rigour in the assessment process. School had suggested it as teen daughter has a very specific issue that has only affected her at secondary and school said that a diagnosis would lead to her getting some therapy to help. That was incorrect information and we would need to go private. A conversation post assessment with the nurse made me realise that the information they had from school was incorrect. The nurse was very defensive and accused me of not wanting the diagnosis and my response was that I’m not saying that my daughter isn’t autistic but the diagnosis needs to be based on thorough and correct information, which it currently isn’t. To be fair they requested further information from school, but that wasn’t forthcoming. The written report of their conversation with me about her development was about two thirds of a page and had eight errors in. They’d even made up a special interest for her, which amused us. I did have an appointment with a charity about the whole process and the ‘report’ and from that meeting, I do feel it is an unsound diagnosis. With the specific issue she has, we subsequently underwent an incredibly thorough assessment privately with a very detailed report which has been more useful. That separate diagnosis is something she does tell people about as it is more specific to her needs. I do think that there is disparity in the quality of assessments undertaken in this country.

There is nothing wrong with being autistic. I quite enjoy it.

If the label is not interfering with accessing services because he needs a different diagnosis, just leave it. It may help someday.

I’ve been exactly where you were OP following a diagnosis for DD (at age 4) when 2 years later, most of the traits which her diagnosis was based on (as per her diagnosis report) had as good as disappeared! So she did end up having an ‘interim assessment’ after a complaint to PALS (for reasons I won’t go into as they’ll be picked apart on here!).

In the re-assessment, they didn’t have DD in again but did go back into school to observe her in class and then we had another parent meeting (via zoom as was in early 2021, with an NHS child psychologist and a lady from the NHS ASD team who originally diagnosed her) in which they said they saw what I was referring to and had they not previously met her, that they wouldn’t have been able to pick her out from the other kids, based on autistic behaviours alone!

HOWEVER!
They weren’t entirely convinced that they wouldn’t potentially see her again in years to come…Therefore, they would leave it in my court whether I wanted to just leave things as they were with her original diagnosis of ASD and end the reassessment there & then with no changes.
Or, if I wished, they could remove her diagnosis based purely on what they’d observed at school but of course, if I later felt she needed to be assessed again, she would have to start the now even longer process (thanks to COVID backlogs), all over again from the very beginning.
Ultimately, I chose to take on board what they said about not being convinced that she wouldn’t end up seeing them again in the future and chose to stick with her original ASD diagnosis and end the reassessment there & then, with no changes.

This was almost 6 years ago now and boy am I glad I made that decision as now that she’s about to start high school, her ASD is beyond evident and affects her in many, many ways - almost all completely different to those which her diagnosis was based on! In other words, whilst much of my answers in the ORIGINAL parent-only meeting were taken wildly out of context AND most of the behaviours they referenced in the diagnosis report as being their evidence for a diagnosis, were no longer behaviours which she displayed, that ultimately they know what they’re doing! They’re highly experienced experts and can see what we cannot see…..

However, by all means, contact PALS and have the conversation, it won’t harm to have them look at him again. An interim assessment can & does happen; they had forms specifically for it so it’s clearly something that happens!

Good luck

Apologies the interim-assessment was late 2021. This (redacted) letter details how it went - uploading this purely as I’ve been troll hunted before by people saying that interim assessments aren’t a thing!

Prior to diagnosis, DD’s pre-school refused to make any adjustments for DD unless & until, she was on the diagnosis pathway (waiting list). Ie: they were prepared to discipline her for her vocal stim!

So he has fixed thought processes, obsessions, tunnel vision, and lacks safety awareness, but he's absolutely fine and you don't think he has ASD?