New but not sure

[Melandru]

Hi everyone.
To be honest I'm not quite sure where to start. And I apologise for being vague.
My youngest son was verbally diagnosed with autism at 18 months then again by a different pead at 23 months. At 2yr 5 month he received a formal diagnosis.
'Spud' has a lot of other issues with his gross motor, feeding, muscle tone, global delay etc and they have been acknowledged as non-related to the ASD.
The thing is as the days go on I'm doubting the ASD DX.
Its hard to explain really, I don't know if its just me not being able to come to terms with the autism or the fact that he has 'special needs' that has me feeling this way (I have 2 other children with SN so cant be that).
Spud does have almost every trait going and when it was first mentioned it was actually a niggling feeling in the back of my mind already so wasn't a great shock. But now, it just doesn't seem to fit..... The peads do keep mentioning the possibility of it being genetic given my other sons history. But they have both had an MRI, chromosome/DNA and fragile X tests done but all have shown nothing

I actually mentioned this to his portage worker who has been working with him for nearly a year now and she said " but yes when we first meet him he was classical of it"

I suppose what I'm asking is, are there any parents here who have had there children wrongly diagnosed with autism?

Thanks for reading
M x

I've posted on here for many years, amongst the hundreds of parents whose children have received ASD diagnosis, I can only think of one or two who have felt the diagnosis wasn't right. Overdiagnosis is unusual in the UK. But I think you are more than entitled to keep questioning the professionals about his, if you don't understand why he still fits the diagnosis.

I believe that ASD is known to be highly genetic/hereditary but it can't be detected in tests. There have been studies into siblings, twins and families afaik. TLP is right, over diagnosis is unusual.

Melandru - are you thinking that there is something, but not exactly ASD? There are a lot of co-morbid dx, is it that you think there is more going on that and is not being properly dx and just being 'brushed off' as being part of the ASD dx and not being fully dx separately ?

Thank you everyone for you replies.

At a glance Spud is very much autistic.
Out side the house he has no communication, very little spoken language, very little to no eye contact, repetitive and he has alot of sensory issues.
He had a full on multi disciplinary assessment and every verdict was the same.
But at home he a totally different child, is able to name thing and ask for things. Only today he came to me and asked me to "wa ha" (wash hands) because he had got chocolate on them! He tells me when its bed time, ok this is generally the same time every single night and I have to stick to a very strict routine so he can sleep!... Yes he sleeps! He asks for his bottle and tell me when he want his milk (he isnt able to drink from a cup) He love seeing his little friend every day at school pick up time and get very excited about it.
There are just so many non ASD thing about him.

His physical issues though. He is very unstable walking and cant walk very far. he has mixed muscle tone and tiers very easily, hypermobility more so in his ankle joints, he uses a wheel chair when we are out and has special seating from the OT at home. We have been told that physically he is more like an 14-18 month old baby. Spud is coming up 3.

So I don't know. Maybe I am just hoping it will all go away and just maybe they are right and its all ASD. I suppose we will see really.
Just feel like my head is about to explode with everything going on.

M x

I think it's important for any parent to trust their instinct and keep asking for questions if they are not satisfied with the answers they've had.

That said, my ds1 has ASD and would also have been able to do all of the things you list in your second paragraph. He also has hypotonia, although not to the extent of your ds and is hypermobile in several joints.

I knew ds was 'different' from a young age, but didn't think autism for a long time, because like you, I felt there were too many 'non-ASD' things about him. What I've learned as time has gone on is that every child with ASD is different, has different strengths and weaknesses and they can present so wildly different, that sometimes it's hard to accept that two very different children could possibly have the same dx. As Leonie said, in order to have a dx of ASD, they all need to have the triad of impairments. How those impairments are 'weighted' can vary massively from child to child and changes the way each child is affected.

Ds1 has Asperger's and in some ways is extremely high functioning, extremely academic and appears to be sociable, yet he still has the triad of impairments and therefore meets the criteria for an ASD dx.

Have the dx's he has had stated where they think he is on the spectrum? Do you think perhaps that he might be high functioning and his additional, physical issues are complicating the picture?

I think what you are going through is pretty common amongst parents who are told their child has ASD and a lot of us have at different times just wished it would all go away. Even those of us who knew and pushed for dx still feel like we've had a kick to the guts when we are told the final dx. I also think that sometimes autism is a tough dx to hear because we fear it means our children may be hard to reach and connect with. Try to keep hold of the fact that whatever dx he does or doesn't end up with, he will still be your beautiful boy and nothing will ever change who he is to you.

It's good that he has an early dx, as it means he will get support at a much younger age than many children and has the best possible chance of going on to realise his full potential, but he is still so little, nothing is set in stone and there's plenty of time to work it all out. If you feel you need to keep pushing and asking questions then do it, as his Mum you know him better than any professional who will ever cross his path and as we all know, professionals don't know everything.

On the other hand, if you are feeling totally strung out by it all, is there any way you could possibly make some sort of conscious choice to take a break from pushing and thinking about it for a while and just enjoy your ds while he's little to give yourself some space to think and processes it all? I know that wouldn't be easy to do, but you have to take care of yourself in amongst all this and sometimes we all need to get off the treadmill for a while, in order to try and salvage our own sanity.

Either way I am going to send you some very unMNetty ((hugs))

Thank you so much moosemama
I think you have hit the nail on the head there.
His physical issues we picked up at a really early age, though we are still trying to get to the bottom of it all and the ASD is an additional DX to them
I think if anything as he gets older it he could well change to high functioning.

And yes I think I am in a state of shock because from first meeting the pead to diagnosis took less than a year so we had moment where appointment were coming out of our ears, so between Spud and his other siblings there has been no time to sit back and take it all in really and at the moment we are still having at least 3 appointments a month along with having to do daily physio and such like. Its a busy ol' life.

I know that we are extremely lucky to have all the support in place that he will ever need, I know this because my oldest is still unDXed and after 13 years we have given up the fight to concentrate on what really matters in his life, so we have been at the other end of things too.

I will for now just continue to go with the flow of things, I think its just a case of having to let it all out of my system in order for me to carry on

Thank you everyone for you support

M x

My friend was pushed towards getting a dx for her son when he was two, despite the fact he showed many behaviours she was adamant he didn't have autism. 8 months on, he's got good eye contact, nearly 100 words, he's now walking unaided, and he's totally come out of his shell. Mum knows best.

He sounds very similar to my son!

DS2 was dx the other way round though... ! he was floppy, hypermobile, gross motor delays speech delays etc.. wearing splints and using a wheelchair for any distance and special seating at home and school... no one bothered with the ASD side of things until much later because he was affectionate (indiscriminately so!) and not causing any problems when he spent the day lining up his crayons..

As he got older the formost issues have come and gone but he is still the same.. he HAS ASD, he also has all the other problems too.. he just got the lot!

Your little Spud is very young.. and how he is how he presents is likely to change a lot over time. It might be that his ASD doesn't become the dominant feature of his special needs, or he may be cheerly sociable like my son.. who has absolutely the triad of impairments, but is more the 'social but odd' rather than aloof.
We were very luck too in that we had support in place from day one pretty much, and dS2 has flourished as a result.. didn't speak til 5 but is now highly verbal, goes to a SS but is integrating now for some stuff, and while he is still floppy and still needs splints etc he gets around pretty well:)

If support is in place, thats the main thing:)

Oh please don't get me wrong LeonieDelt Spud has a lot of very obvious issues that can not be denied, just more unsure that the latest DX is the right one for him, his initial referral to the CDC was to try and get to the bottom of the physical stuff which was and still is my main concern. There was no mention from us to the pead of ASD, although like I said in my first post the niggles were there but far from an issue for him or us. But since the first mention of it, the ASD has, well overshadowed everything about him.

But I can totally understand what you mean.

M x