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Misdiagnosed autism?! Is that even a thing?

(12 Posts)
zanyzoo Wed 20-Feb-19 14:25:54

My son is nearly 5 and has just been diagnosed with autism, using an ADOS screening with OT, SLT and paed. I've always suspected as he is very controlling, intense fears, obsessive and has rituals/routines. He also has quite a few sensory issues and it's been suggested by his school to have an Dyspraxia assessment.

I've always encouraged him to do things that put him out of his comfort zone, gently of course and things he'd ultimately enjoy. He used to cry and be a lot more anxious, but we've persevered and he's grown in confidence

This week alone I have dropped him at a new swimming course where he knew no one, he's been to a play date at a friends house who he hasn't been to before and he participated confidently in a group I took him to. He has done so well with all of these things I'm thinking has he been misdiagnosed? Is that even possible?

BackforGood Thu 21-Feb-19 22:48:06

It is possible to manage those things and have autism though.

Many folk who like routine, actually don't mind things that are new. They become anxious when something that they are familiar with and expect to be one way, change, but not necessarily when there is something new / they haven't done before.

Be aware, as well that autism really is a broad spectrum. There are many people with autism who live a very full life, and learn to manage things they have difficulty with.

zanyzoo Fri 22-Feb-19 07:33:40

@BackforGood thank you for the insight. There's a lot to get my head around.

SerendipityReally Fri 22-Feb-19 13:27:52

Fantastic that he has done all these things. I think it's a little early to be questioning the diagnosis.

Did you prep him well for these things? Were they things he was keen to do? Were they environments that suited him, Eg not too loud or raucous? Did the leader communicate clearly and well? Were the other children kind and following the rules? If all these things align for my DS he can manage all sorts. It doesn't mean he's not autistic.

Your son might have different elements that need to be right. Use these recent successes to try to identify what went right this time, so you can try to repeat it in future. And well done to you and him.

zanyzoo Fri 22-Feb-19 14:35:10

Thank you! It's a yes to all of those questions and you're quite right, if those things aren't all in place then it doesn't go as well!

camcam1 Sat 13-Apr-19 14:45:35

Read through this thread twice and it has been very interesting. I know no one here can tell me if my child is misdiagnosed, but it is good to see children on the ‘milder end’ of the spectrum make good progress as a lot of information I have researched has been for more severe autism.
My ds age 6 was recently diagnosed (received the letter 7 months after the consultation) and the basis for the diagnosis imo seemed quite weak. He failed to show enough eye contact with the examiner at the table(nervous?) and twisted his fingers at times during the consultation and also had used little inflection in his speech. His report noted that my ds school stated he has normal range of understanding and intellectual ability. He plays well and has friends has no sensory issues whatsoever and attends many after school clubs and activities.
However, he was referred from
His school over 2 years ago as he was extremely anxious and would cry easily over small things. They however are saying they dispute what the report stated about the speech as my son is very expressive in speech (but doesn’t always write sentences correctly- normal at this age).
In the last few months all his anxiety has dramatically reduced . It has surprised us all, including his school. Ds is able to deal emotionally with issues and helps others at school when they are upset. He received no support from the school as apparently he functions very well academically and has a good group of friends.
Perhaps ds reduced anxiety is him masking his worries? We have praised him for not getting upset and he thrives off of this.
But I am taking him back to his dr as I am very confused as I am scratching my head. Can a child ever improve when autistic this quickly? Or perhaps these few months are too early to say? As my ds gets older maybe the anxiety will come back. But- everyone (friends and family) keeps telling me his diagnosis is wrong. I feel confused as from reading this thread it seems autistic misdiagnosis is very rare indeed.

LooksLikeImStuckHere Wed 15-May-19 21:59:49

There’s a great intervention called the Zones of Regulation. You may have heard of it but essentially, it groups emotions into four colours (simplified - anger, worry, sadness, fine).

We find when children with ASD are in the green zone, I.e. they are emotionally doing ok, they are able to do many things they simply cannot do when they are in the other zones. So it’s entirely possible that they are able to do things you didn’t expect them if all other external conditions are not exacerbating the ASD.

As a PP said, don’t question the diagnosis just yet but make sure that settings meet needs rather than the diagnosis (most will do this) and keep an eye on it.

LooksLikeImStuckHere Wed 15-May-19 22:01:27

Also, it’s very common for the Summer Term to be somewhat easier as they get to grips with all the changes from moving year groups.

Then we do it to them all over again ☹️

RuffleCrow Thu 26-Sep-19 13:21:27

So based on one week you tgink he was misiagnosed? My ASD son goes in peaks and troughs, personally. He's still autistic even on his good days - as evidenced by speech pattern differences and repetitive arm flapping etc.

Schooldilemma1 Fri 11-Oct-19 09:52:05

The bar is v low for diagnosis- basically if it adversely affects your life that’s enough!
My son is ‘mildly’ affected in many of the areas and has just been diagnosed because of that. He is 10 years old and he seems neurotypical so expectations of him are ‘full/complete’ and his difficulties are subtle and pervasive.
Basically he comes across as selfish/ naughty/ badly brought up but he has far more of our time and energy than our younger son who integrates v well.

My concerns were dismissed by the health visitor at the 2 year check and they were scornful of the struggle we were having with sleep and behaviour. It took 3 separate trips to the gp with letters from school just to get him on the CAMHS waiting list!

What you describe is autism, just not the stereotype. The broadness of the diagnostic criteria is v unhelpful for the people living with it, really it needs to be split up somehow into different categories so people have a better idea of what to expect.

Ellie56 Fri 11-Oct-19 15:29:43

If you put the right support in place at the right time they do grow in confidence, and can sometimes appear as though they are not autistic. It's when the right support is not in place, that they can't cope and anxiety starts taking over.

It doesn't mean there's been a misdiagnosis (or the other one I've read on here) they've "grown out of " autism.

You have to meet a very definite set of criteria to get a diagnosis of autism and it is a lifelong condition.

PleaseNoFortnite Sat 16-Nov-19 18:05:50

I’ve got two on the spectrum who are very high functioning, have a few friends, likely to go on to university etc (in secondary school at the mo). I’ve had this from friends and family who think that they’re fine, but they see them in calm situations where they know people and are comfortable. They don’t see them on the days when it’s all just too much and they fall apart, or when they’re so anxious they can’t speak to anyone, or when they are just spinning in a corner. I did read an article saying that in one study 10% of kids diagnosed with ASD had no discernible symptoms when they were re-examined as young adults, but whether they magically recovered or just developed ways of masking is debatable.

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