Has anyone ever had a wrong diagnosis?

[Sara4472]

Hi everyone,

My son was diagnosed via the NHS with autism he was four years old. At the time he had little speech and understanding but he is age appropriate now, he's six.

I have recently undertaken a few assessments OT and Ed Psych and both are confident that he does not have autism, more like dyspraxia and traits of possible ADHD.

Should I get him reassessed?

Any advice will be greatly appreciated.

I did. Though DS was initially diagnosed with moderate learning difficulties... tested again, he had above average cognitively. Though I suspect an inaccurate diagnosis of learning difficulties is given to children who have moderate to severe language difficulties.

I think getting a misdiagnosis of Autism is very less common.

I would get him reassessed. But be cautioned, an educational psychologist and an Occupational therapist are no way qualified to give or not a diagnosis of Autism. So I would take their opinion with a pinch of salt.

His understanding and speech may be age appropriate. But what about his social skills ? Play skills, rigidity in behaviour/ ideas.. obsessions or lack of interests... understanding of social idioms... social cues...facial expressions...social routines. This is what a psychologist or a specialist speech and language therapist who is qualified to diagnosis Autism, would be looking at all those things I listed. Age appropriate understanding and language skills will only be a very small part they will be looking out for.

Many thanks for your reply. Yeh I forgot to add speech therapist ! Lol she didn't think he was autistic too.. she observed him at school, playing with class mates and did her own one to one assessment..

At the time he was diagnosed the assessments were quite in depth, so I'm not sure..

Op, there's a difference between a speech therapist and a specialist speech and language therapist who has additional qualifications to administrate an ADOS assessment or diagnose children who are on the Autistic spectrum.

I agree. I'm a specialist SLT diagnosing autism. I've seen lots of SLTs miss autism. I would have missed it myself for the first ten years of my career, before I trained to diagnose.

Yeh she is an autism trained speech therapist which is why she is seeing him as he has a diagnosis. She is also part of a multidisciplinary team who does diagnose.

I am just asking if I should get him reassessed ?

Tbh I doubted his diagnosis since it was given so these three professionals have just made me doubt it more.

My two (now 14) both have a diagnosis of an ASC. Looking back some problems were identified in nursery (speech etc) but nothing was diagnosed; everything seemed fine in infants, but then social difficulties and anxiety became problematic in juniors. So I guess what I am saying is that you may be in a window where because his needs are being met his differences are not obvious.

Unless the diagnosis is doing harm e.g. unnecessary interventions that take up time from normal lessons or his ADHD like difficulties are such that you would consider medication then I would do a wait and see approach and revisit when he is 9 or ten. I think the picture will be clearer then.

I'm quite shocked that a specialist speech and language therapist is telling you that she doesn't think your DS has Autism. She should know (especially as she's a part of a multidisciplinary team) that she can't make that call alone.

Anywhoo, she can't make that diagnosis alone.... your DS would need to get assessed by her and a psychologist ( not an educational psychologist) and a developmental paediatrician ( not an occupational therapist or the ed psychologist).

You can go ahead and get him reassessed. But he was just diagnosed at 4 plus, like I said in my previous post, Autism is not just about a delay in their understanding and speech. They will assess his play skills : turn taking, imaginary play, appropriate friendships. They will assess his sensory difficulties ( and that's a whole list). They will assess his ability to be able to understand social routine/ jokes/ facial expressions/ social awareness.... also any signs of rigidity in his behaviour.

He could have Autism and ADHD or Autism and Dyspraxia ( though I've heard a lot of people don't get the two diagnosed).

I hope I don't sound harsh OP, I'm just making you see the bigger picture. I've come across a lot of professionals who told me that my son was fine and it was just some sort of delay.this was coming from an occupational therapists, 3 speech therapists, specialist teachers etc. In fact, he wasn't fine and as he got older it became more apparent.

Ofcourse not I came on here for advice not offended at all!

I mentioned the speech and unsderstanding delay as that's what the paediatric report was all based on, she wrote no sensory issues appropriate play skills, no repetitive behaviours etc.. also I read about dyspraxia and he ticked all the boxes.. I hadn't ever seen something that described my son better.

And the OT I saw also specialises in autism he is extremely respected in his field and so is the ed Psych their reports together cost me 3000 pounds.

I think I will wait and see what happens
I think I will wait and see what happens

The ed and OT may be specialists in Autism but ! They are not qualified to diagnose it and never will be. They may be part of a multidisciplinary assessment but they don't make the call, it's either the developmental paediatrician and a psychologist or a specialist speech and language therapist and a psychologist.

How come you have private reports ?

If your still worried and want a reassessment, I strongly advise you get your son first seen be a developmental paediatrician because not only will they put your son forward for a reassessment for ASD, they will put you forward to the professionals who diagnosis Dyspraxia and ADHD and go through appropriate tests.

For many autistic people who don't have significant language or intellectual disability there will be periods in their lives when things are going well, support and environment are good, and it might appear that the autism has disappeared. Of course there are going to be some misdiagnoses as there are with any diagnosis, but I do believe it's too early to tell for your ds Sara and, as it isn't harmful to have an autism diagnosis, IMHO there's no need at this stage to re-assess.

Hi OP can I ask what strategies / therapies have been used with your DS to achieve age appropriate language skills? Thanks (any advice is greatly appreciated)

I'm interested in hearing what you feel helped with the language too!!
Especially receptive language, there isn't much in terms if resources to help with this issue that I can find!

2boys, the one thing that has helped my son incredibly with his receptive language skills.. is using a high tec AAC. Check out YouTube videos regarding this. I wish I discovered this when DS was much younger.

I'm not sure in OPs case but Autism... in regards to language and communication seem to suddenly go through a language spurt...like the brain just clicks and hence producing lots of language.

Thanks notgiving I have done a teeny bit of research on AAC's. I didn't realise they could be helpful with receptive language so will look more thoroughly!!
PECS seems to have helped quite a bit, but we have slipped a bit with using them since DS began saying a few words more consistently to request. I have planned to get back into them with more pics, so I guess AAC's are kind of an advanced version?? Easier to carry around etc?