Autism or Speech Delay? ADOS screening - taken off the list.

[Crewsnip]

DS age 4 has been waiting an ADOS assessment for over a year. However I was informed at his last appointment that he has been taken off the list and I believe his paediatric doctor wants to carry out the assessment herself. I think she will diagnose him with ASD.
DS absolutely has a speech delay. However - a lot of typical autistic traits I don’t think he is showing. E.g - he likes being around other people, even if he can’t speak at the same level as his peers, he does do some imaginary play, his behaviour is calm (although sometimes quite passive), he makes eye contact, smiles, laughs. However he tends to need a prompt to do anything (toilet, feed) and has difficulty expressing his needs. He is also fascinated by numbers, letters.

I need to email his doctor and I think I need to push for the ADOS screening rather than the more informal assessment that she intends to do?
I’m also finding the autistic diagnosis so broad that it covers a whole range of behaviours that DS isn’t necessarily displaying. Because of this, I’m finding people make ‘typical’ ASD assumptions about DS (he doesn’t make eye contact, limited imaginary play) when that’s not the case. E.g his swimming teacher tends to ‘assume’ he can’t and gives too much help, whereas when he swims outside of his lesson, he can do all the skills already.

My personal view is that - yes he has a speech delay but I’m questioning whether he is autistic : or that an autistic diagnosis isn’t specific enough to his needs and the support he needs is more related to a language delay. Any thoughts would be very welcome!

As the saying goes, ‘if you have met one person with autism, you have met one person with autism.'

Nothing you have written rules out the possibility of autism. People can be autistic and display eye contact, like imaginary play, be sociable.

Your problem is people's assumptions, not the possibility DS has ASD. Have you spoken to the swimming teacher?

@BlueBrick

Is it possible for someone to have a speech delay and to not have autism?

I’d say DS’s primary area of need is a speech delay and then secondary to that : he has some autistic traits. However, if he receives an ASD diagnosis - I think this will overshadow what his primary area of need is : his speech. I already see many people assuming or trying to attribute certain behaviours to him because they hear ‘ASD’, when it’s not actually the case.

The speech and language therapist on her last home visit, thought it’s more a developmental language delay than autism. He’s currently playing very happily with 2 children he doesn’t know in a soft play…

Of course DC can have a speech delay without having ASD. However, none of what you wrote rules out autism. It is possible for some autistic DC to play with other DC they don’t know.

Hello,
There are a few things I find confusing in your post apologies if I'm asking silly questions! Firstly I've never heard of a diagnosis on the NHS that isn't ADOS, worth understanding your local area offer and how your local authority pathways work... is your child at school or nursery? In our area we have a SEN parent group that would be really helpful and it would be good to understand what a differing diagnosis method would mean. Secondly the swimming teacher, is this a SEN swimming one to one session? If they are not diagnosed now is why would ASD be the reason they are not challenging your child enough? I think regardless of need understanding their methods would be useful here. Finally a SALT is not necessarily the best person to speak to about this, I've met a couple who were so ignorant about ASD in fact it's amazing how many people who work with SEN kids have a really narrow view of what ASD looks like
Now my experience for what it's worth, my ds is now 6 in Year 1 at school... at 4 his primary need was speech and language now I would say it is fine motor/sensory differences... his social communication is definitely different but he's a sociable boy and mainstream school is perfect for him in that area the other areas however he needs significant support for. He has an ASD diagnosis, it doesn't answer everything for many people, hence the spectrum... he is I'm sure neurodiverse, but everyone who works with him needs to understand his specific needs which at the moment is my job to advocate for that's the fight not what label to use.

Bobobab sometimes if the team is confident about the diagnosis the ADOS isn’t used.

Yup NHS diagnosis without ADOS here. Child is in Autism Resourced Provision.

Talk to the paed about why they are not doing ADOS. She still has professional standards to adhere to, and access to other tools such as structured interviews.

Of course children can be speech delayed without being autistic, but equally they can be autistic while still making and having friends. The trajectory for the latter can be pretty awful if they go up to secondary school not diagnosed. Hopefully not a risk for your son because you have support and assessment in for him already.

@Bobobab

I’ve just had an email today now saying he IS on the list. The paediatrician says she will use the ADOS as a tool to make her diagnosis. I’m also not sure how I feel about the paediatrician making the diagnosis. A few things she has said I don’t agree with, and when I’ve read her reports - she’s not ‘liked’ that I’ve pointed out corrections that are needed (e.g she stated that he was above an expected level when she meant below).
The swimming teacher has two children in her group - both with SEN - but I’m going to change to a different teacher after Xmas.
But a common theme I find is : a misunderstanding of his needs and low expectations of his abilities because of misconceptions.
I think - once he gets a diagnosis - this will be an issue he continues to face. I’d say it’s 50/50 with the teachers/professionals he meets who understand and give him appropriate targets v’s those who don’t and assume he can’t achieve things.
DS has an EHCP and is mainstream. I had to fight a bit to get his place there : the school initially were going to say they couldn’t meet his needs. He’s now been there a term and seems happy, is learning and had made friends.

Thanks @Piony and @BlueBrick for your comments too.
I got the impression from my last paed appt that’s it’s down to funding/a long waiting list : and therefore saves resources if the paed does the diagnosis without the ADOS screening. Although she’s now backtracked I’m her email! I almost feel I need to write down what she states in the appointment - because her email made it sound like I’d misunderstood what she said - and he was never taken off the list!

I guess my point is if they are underestimating or not challenging him now when he hasn't been diagnosed then I'm not sure that would happen more... in fact you might get more insights into his needs from the process. Perhaps it's more to do with him being passive/calm (as you described)...

I'm not sure if it always works like this but I was in the room for my ds' assessment... he was amazing actually with people he didn't know, completely himself and I left with no doubt he would be diagnosed.

Best of luck with everything xx