ASD / neuro assessment

[roziro]

Hi
I think I posted just over 2 years ago about my ds being seen by camhs for a very initial assessment after we and school raised concerns. He is now 8 and has appt for full assessment, including learning assessment, in a few weeks.

He has new things that have developed, like tics (near constant over last 12-15 months), talking to himself; and is still doing things like being violent to us at home and out of the house, meltdowns, and repeating words over and over, windmilling his arms and sensory things like not coping when we are talking.

But he is getting on better at school now- possibly not communicating any better but can fairly happily be in school environment now, apart from some anxiety about certain school events. He is also starting to make better eye contact with some people.

We are not looking for a diagnosis as such- more like coping strategies- but what I would like to ask you all is how will they pick up on these issues/ symptoms (if they are indeed signs or symptoms) during assessment? Like, I can't see him doing any of these behaviours during assessment, apart very possibly from hitting me, and if they would be indicators of an asd then he will not be diagnosed- if that makes sense? And I think he might make eye contact and (reluctant!) responses to questions.

I know people/ kids with asd can make eye contact but I've already had an Ed psych say he can't be autistic if he can do this. 😳

Would really appreciate any reassurance/ advice about how robust or accurate the assessment should be?

[BlankTimes]

The diagnostic assessment as outlined here is what should happen.
www.autism.org.uk/about/diagnosis/children.aspx

All of the team should be qualified medical professionals, each specialist in their own fields. they have standardised tests to look for all sorts of indicators and they have years of experience in diagnosing autism and its co-morbids. Each person with autism has a different set of traits and each person presents differently, but when all of the scores and observations are totalled, a diagnosis will be given, or you'll be told there are traits but not enough for a dx.
However, because school also raised concerns, it's much more likely because their observations will be different to yours and provide a much larger overall picture than just a description from one standpoint.

I can't see him doing any of these behaviours during assessment
Maybe not those things, but if he's autistic their tests and obs described above will still be enough to diagnose him.

I know people/ kids with asd can make eye contact but I've already had an Ed psych say he can't be autistic if he can do this
Sadly some so called professionals really are not up to date with their information on autism.
Truth is, some autistic people find eye contact uncomfortable, others don't. No empathy, everyone is on the spectrum, having a superpower, being caused by xyz and whichever others I've forgotten to mention are also all myths.

[roziro]

Thanks so much for taking the time to reply Blanktimes, your info is really helpful.

I guess we will need to trust in the process on the day too.

[roziro]

So we received an autism diagnosis for DS. It's hard to take in, maybe they have got it wrong-I'm wondering how reliable the ados is..
But the other side of it is I am looking at some of his behaviours with new eyes and thinking ah I get it now. I know he is the same boy, and that he will still even grow and develop but it's hard.
Silence from school after I told them- all through nursery, and seeing Ed psych at school they didn't think he had autism, they thought it was anxiety. Feel so angry with them. But also, what if it is anxiety. But then he doesn't seem anxious when he is repeating stuff over and over etc

[roziro]

I should also say the assessing team fed back about all the things they picked up during assessment- lack of reciprocal conversation, couldn't make up a story, finger movements/ flapping, couldn't identify emotions or demonstrate theory of mind etc- but I keep thinking maybe he was just having an off day!

[AmaryllisNightAndDay]

It's hard, eh? Give yourself as much time as you need to process this emotionally and mentally. It took me a very long time to adjust to the new reality.

In the long run I found my own DS's diagnosis was the best thing that could have happened to him. As you say, his behaviours started to make sense, and not just to me but also to other people like the school. And they started interacting with him in a way that suited him much better, and so he started to relax, and that helped him learn and develop.

To be honest anxiety and autism often go together, the stress of trying to cope in an autism-unfriendly world where DS didn't quite understand people and people didn't quite understand him made my DS very anxious, and that in turn made him more prone to outbursts.

I hope this diagnosis is the start of better times for your DS and a pathway to the things that will help him develop. Are there any plans to give your DS extra support in school, or any adaptations, or therapy? My DS benefitted a lot of from some weekly sessions at a social / communications group with a language therapist. But what's on offer varies from place to place, and you may have to keep asking.

[roziro]

Thank you Amaryllis. The school have said nothing so far but you have given me some great ideas for things I can approach them about- changing/ monitoring their interaction style etc, and communication support- thank you so much.
We're definitely in the stage of we don't know what we should be looking for. You'd think school at least would be more forthcoming.
Parents evening is also this month so I can at least ask his teacher what her plans are, as well as the head teacher.

[LightTripper]

It takes some time to adjust but there is lots out there to help and it sounds like already the understanding you are gaining is helping.

A great website to start is "autistic not weird". It's run by Chris Bonnello who is an autistic teacher. It has articles for autistic kids as well as for parents. He also has a YA novel out your DS might like, depending on how he feels about his Dx.

[LightTripper]

I would also suggest trying to arrange a separate meeting to parents evening. I always find its hard to get through academics and social/emotional stuff in the slot you get. It's reasonable to ask for a separate session!

[LightTripper]

Also, it may well be that some of the things he couldn't do in the session are things he can do with you at home when he's relaxed. When DD had her Ados we sent a list of observations from home and one thing the assessors commented on was how much imaginative play she does at ho. E, which they didn't see in the assessment. But it doesn't mean she's not autistic: how you process information and behave outside your comfort zone with people you don't know is a huge part of it (and probably the only thing we notice is "obviously autistic" about DD at home).

[roziro]

Thank you LightTripper, this is all really helpful. I'll check that website out, there's perhaps information on it that will also help when we tell DS about his autism.
And you know, I think I will ask for a separate meeting- thank you for that. It's realising we can push, or might have to push, for a different approach etc and that we don't need 'permission' to do that iyswim

[LightTripper]

If Chris Bonnello's book is a bit old for your DS (I think it's about teenagers - I haven't managed to read it yet!) then another one that might be worth trying is "A Boy Called Bat". It's a lovely story (the first in a series though I haven't read the rest yet as my DD is a big younger) and might be more age appropriate.

Chris does have a good page about telling your children they are autistic, here:
autisticnotweird.com/when-should-i-tell-2020/

It does take a bit of getting used to being "pushy" (or what you feel is pushy). But worth it!

[ParsnipToast]

Have a look and see if there are any Earlybird Plus courses near you. Our local area runs them and it's very useful for introducing you to autism and what it means. Do it alongside reading stuff by actually autistic adults like Chris Bonello though. I think it's so important for parents of autistic kids to hear from autistic adults to really understand things.

Anxiety and autism are so linked, as the PP said. If you are on Twitter there's a guy called Pete Wharmby who is autistic and did a thread on autism and anxiety just yesterday that was really interesting and enlightening.