How likely is it an ASD diagnosis can be wrong?

[KFCAndMe]

DS (8) was formally diagnosed with ASD 6 weeks ago. I finally received his reports last week and I’m second guessing myself as whether he actually IS autistic.

But I don’t know if it’s because I’m struggling to come to terms with having my third child diagnosed. DS is wonderful but also has his struggles which resulted in the referral in the first place.

However, his diagnostic report is nothing like his two siblings’ . I know all people on the spectrum present differently, but I can’t help wondering if we’ve got it “wrong”.

DS was reported to have good intuition in to emotions and friendships, he was able to ask the psychologist responsive questions (although he did this rarely, he was able to do it) and he was able to label emotions. He was also comfortable with the psychologist and his interactions were not forced.

He did not attempt to fill silences, he has some unusual movements and repetitive behaviours and tended to drift off in to his own world during the assessment meaning his missed some instructions or attempts at engaging him. He also did not really invite the psychologist in to his play.

The school reported no concerns whatsoever, but I expected this as they appear to be oblivious to the concept of HFA.

Deep down, I do feel DS is not typical for a child his age in many ways, but in other ways , he seems fairly “typical” and his reports are quite “light” in their findings in comparison to both his siblings. What are the chances of it being wrong?

Obviously I love DS no matter what, I’m just feeling slightly shocked to have had my third child diagnosed. Please be gentle .

I feel the same as you. I have two boys in SEN school. Their reports are damming and unrefutable. However dd has just be diagnosed and like yours, the report states very tenuous reasons for each triade.

School insist she is fine ( they would insist being non verbal at 7 was fine to in all honesty)

What I didnt know at the time of diagnosis was that a OT assistant wrote her OT report and did 50% of her observations then a qualified OT signed it off. If I had known this, I wouldn't have submitted the report. NHS has insisted the report was fine to go to a ASD panel without saying it was written by a assistant. But they then wanted to know why it went into a ASD panel and for me to inform the diagnosis paed asap.

But what if it is ASD? If she sails through puberty I will try to get a second opinion then.

Do you expect any issues because he has a diagnosis? Opportunities lost or people treating him in a way that's not right for him because he has a diagnosis?

I felt similar when my DC were diagnosed at 9, but I'm so glad they were because the transition to secondary has been really hard and would've been near impossible if they didn't have their diagnosis and resulting EHCP in place.

It could be that your DS is not autistic, or maybe is but affected differently than your other DC. Or maybe you've learned to parent autistic DC so well that he is not showing the usual signs of distress that people often mistake for symptoms of autism itself?

Either way, as PP said, if you don't think the diagnosis will have negative consequences then I'd just go with it to see how he goes through the teenage years and if you still think he isn't autistic, go for reassessment afterwards?

I’m not sure what I think. I think realistically, the diagnosis is unlikely to be wrong as he has so many of the classic “traits” but they just don’t seem as obvious as my other two DC.

I think it’s more likely to be a case that he presents differently to his brothers but it’s hard to comprehend as he always seemed to be the NT one , until he wasn’t. His brothers were diagnosed quite young.

Who contributed to the assessment OP? What assessment battery did they use for the diagnosis. What did you see in your child that made you seek a diagnosis in the first place?

Sorry, cross posted.
If you think that he is on the spectrum, can you see benefits to an early diagnosis for your child and focus on those benefits and his strengths?

It was a multi disciplinary assessment with occupational therapists, psychologists and such like. It was an ADOS assessment.

It was his emotional immaturity (he cries at almost everything) , literal understanding of language, sensory impairments and the constant need to line up and count his trains and other such things which prompted the referral.

Is it normal for parents to go through a range of emotions after diagnosis? I was more accepting with my other two but I feel this one has thrown me but I’m not sure why

What/ who drove the assessment? Did your dc have an ADOS?

Someone in my family diagnoses adults with ASD. He says that you could have quite marker traits but cope well anyway in life and doesn't impact you, you wont be diagnosed. Or you could have less severe traits but struggle and you would get diagnosed. So it's a real puzzle to pick apart.

Keep thinking why you ended up in front the ASD team. If those reasons feel valid then and still do, that's the thing that counts. My daughter was right on the cusp of the cut off. But she cant transition into school.

So she is bright, funny, popular, confident, etc etc. But her ability at transition crushes her.

I feel like this but he has demand avoidance. I know they say that that's on the spectrum, but to me it doesnt seem like it is.. he does what he wants and doesnt do what he doesnt want but in terms of reading cues, reading a situation, understanding humour, making humorous comments himself, confidence socialising..... he doesnt seem to have autism. He is refusing to go to school atm though so there is something going on.

Sorry cross posts. I carry out ADOS assessments and they are quite sensitive. Given the multidisciplinary nature I would say it's highly highly unlikely to be a wrong diagnosis.

Yes it is normal to go through a range of emotions 💐 . It sounds like you perhaps weren't as convinced/ prepared for the diagnosis as you were with your other dc?

Your dc may have not scored on the social interaction elements of the ADOS (often the most obvious in terms of presentation) and may have scored higher on the restricted interests, repetitive behaviours and sensory, which can still give an overall score for Autism. Have you had verbal feedback in the assessment? If not you can perhaps request this, which will allow you time to ask questions.

“ . It sounds like you perhaps weren't as convinced/ prepared for the diagnosis as you were with your other dc? ”

Yes, I think this is the case.

He did score on the social interaction side of things (he ignored the psychologist’s attempt to engage him most of the time, but not all of the time) but yes , it may be that he scored more highly in the other areas , that would make a lot of sense.

DS1 and DS2 were both diagnosed younger and I think their ASDs are more ‘obvious’ than current DS .

Just to add that there may also have been a shift to a more strengths-based approach in assessment and report-writing.

Which is generally a good thing as it can be heart-breaking when reports only focus on what our kids can't do. It's also really important for parents and teachers (and the children themselves) to know where the strengths are.

He sounds a lot like my ds in ways. His presentation is subtle and most people don’t spot it. To be honest I spent a long time convincing myself the diagnosis was wrong.

He’s likely to need a different kind of support and advocacy precisely because he appears so NT.

I found in school when ds would complain that he struggled to concentrate in noise, the response was to shrug shoulders because classrooms are noisy. Once we were able to bring the term Autism into play the reaction was completely different.

I had him in a&e recently and he was masking so perfectly that he was showing virtually no pain response. I’ve been through this before as “anxious mum” and it was eye opening the difference it made when I cited autism. Even so, the doctor was incredulous when the x ray showed up a fracture. He had been in school for 3 hours with it, and no one thought to let me know because he wasn’t showing any pain. He couldn’t remember the incident either and was so articulate in the examination that they didn’t doubt him. Sorry it’s a very random story but I’m just saying that there can be all sorts of challenges for dc who present mildly. There will be times when he will need your advocacy more than if he were more obviously displaying traits.

But I know how hard it is to adjust from the certainty that your dc doesn’t have asd to staring at a diagnosis. Take it easy on yourself while you process that change.

I think I know where you are coming from: I have two boys, 3 years apart and both have an ASD diagnosis which they were each given around the age of 3.

They are now 13 and 10. The eldest DS1, has obvious ASD traits: toe waiking, finds empathy difficult, avoid eye contact, amazing memory, enjoys repetitive behaviours / activities, fussy eater etc
DS2 is very different - he has extreme food fadiness, is upset by certain environments, has learning difficulties and can find it hard to regulate his temper but I don’t see as many of the obvious autistic traits that his brother has. (Interestingly it’s DS2 that has an EHCP in school for support. His brother is doing fine with minimal extra help).

I strongly believe DS2 was given an ASD diagnosis as a catch-all to get him the help he needed/needs. At the time of his diagnosis the doctor who relayed the findings of the panel that assessed him stated he was borderline in meeting ASD criteria and pretty much asked us if we wanted her to diagnose ASD or not. I was worried that if he didn’t have a specific diagnosis it would have been harder to get him help so I said ‘yes go for it’ as he was clearly struggling and needed access to support.

So to sum up - I don’t think DS2 is autistic - as he’s grown I think it’s clear that what he had were communication difficulties which were causing emotional (anger) issues. I now suspect he has dyslexia but I don’t think ASD. I’m happy with the diagnosis as it stands as it gives him the help he needs but he’ll get to choose for himself if he wants to use that label as he enters adolescence. He’s not bothered about it one way or another atm.

Hi @Paripale - have you considered ADHD for your DS2 ( sound similar to my DS ADHD ( who also has some ASD traits in his profile). Often do present with dyslexia ( as executive functioning). I’m sure you have but thought I’d mention it incase!

I can't see how it could be wrong. He has to meet certain criteria to get the diagnosis, so he must have met them. That's not so much about traits and presentation but simply the impairment/deficits needed to reach the criteria.

Don't forget OP, you already have 2 children with ASD so, and I mean this kindly, your home and family lifestyle is likely already to be filled with interventions and general acceptance of what other people would notice as being quite prominent traits or different behaviours.

Some boys have a more 'female' presentation of ASD, so comparing one son like that to the other two who have a more male presentation, it's easy to see why you were shocked.

Take your time to process the news, take as long as you need. Have a look on the SN boards, there are many parents who feel exactly like you do post-diagnosis.