ASD assessment - can anyone share their experience?

[TryingForOurSecondxx]

My gorgeous son is 2 next month, and for a while I’ve wondered whether he could be on the spectrum. My knowledge of it was limited although he is my 3rd child of 4. When the health visitor did his last assessment, I blurted out that I wondered if maybe he could be autistic. She did an assessment and he ticked nearly every single box. He’s non verbal except for a few noises. I have read and read and read about it, and the more I read it’s like someone is describing my child. He was referred in July, but it’s around a 6 month wait in my area. He has a hearing test next week but what I really want to know is - what happens in the ASD assessment? Specifically for a 2 year old if possible? It’s at a family support and development centre with different healthcare professionals (based in Lancashire) but that is really all I know. I’d love to know more about what to expect. Thank you!

Hopefully someone will be along soon who knows that particular centre, as all assessments across the Country are different, however, I can't imagine the assessment time itself will be that different ?

Where I am, they would have a Nursery Nurse in to play with / engage the child whilst another person from the multi disciplinary team will observe. It might be they swap over. It might be an OT, a SaLT, or a teacher.
They also talk to the parent(s) / carer(s), and, where applicable to staff from their Nursery to see how typical what they have seen is, and ask lots of questions "Do they do x/y/z" etc. to try to really build up as full a picture of the child as possible.

My ds was a bit older when he was assessed (around 4) but we started the process when he was just over 2.

Like the previous poster says they try and build up a multidisciplinary picture of your child. It varies from area to area. So for us they had reports from nursery and ds did a series of small group sessions with speech and language. He also had his hearing tested.

In our area the final assessment was broken down into two stages, the first part was with a paediatrician, who interviewed me and tried to do a series of games with ds (he did not oblige!).

The next assessment was with two people, in our case both from speech an language. One of them asked me a series of questions about ds, like his history and what he struggles with, at the same time the other therapist played a series of games with ds to see how much he engaged and how he reacted. At the end they asked us to wait outside while they discussed the results then called us back in straight away to tell us he was autistic. I know in some areas they don't give you the results straight away.

Our process was very similar to @livpotter's. We started at about 2.5 and were seen a few times before Dx at around 4. Each appointment seemed rather similar: the senior paediatrician talked to us while (in the same room) a junior paediatrician or SLT played with DD and took notes.

The final Dx assessment was ADOS (rather similar to the other assessments but more structured and more varied) plus they sent an SLT to observe DD at nursery and talk to nursery staff who had worked with her. We got the results a couple of weeks later I think - maybe even a month.

Thank you so much for your replies ♥️♥️ It’s the complete unknown isn’t it!

We paid to go private and DD2 is older (she's 8).

Basically initial barrage of questionnaires via email (plus we already had a SALT report raising concerns about social communication difficulties). Then a zoom interview with me answering questions about developmental history that was timetabled for 2 hours but because I had a fair idea of the information being looked for - we got through it in about an hour and a bit (it was hard going though). I'm a trainee SALT myself so knew the kind of things they were likely to ask so apparently we got through it with a lot less probing than she normally needs to do - but I still felt like I'd gone through the Apprentice interview round by the end of it!

Then an assessment in clinic - I didn't go in for this bit - but DD2 was pretty unimpressed and just commented that "they asked me stuff, was OK" when I queried it.

Have an observation of her in-school to arrange when we get back and then a final "findings" session with the lead clinician.

We went private as the waits to even get through the initial referral stage are pushing 2 years in our area, and DD2 masks in-school so it was always going to be harder to get taken seriously before we hit the point where all the shit falls apart at once.

My son (2.8) has just completed the ADOS assessment following an initial assessment with a developmental paediatrician. We also went private to speed things up. It was a Zoom interview - fairly rapid fire and intense - with me and DS’ dad, then a play session with an SLT in person (which my son loved, he adored the woman in question and engaged with all the toys and games which I was not expecting!)
A huge report is coming this week which apparently goes into a lot of detail. So we weren’t kept waiting for answers, they scheduled a Zoom again for us two days after both sessions were complete.
We did get an autism diagnosis, which is hard to hear, but wasn’t unexpected.

The thing I’m finding difficult is that they wouldn’t say where on the spectrum DS fits. I’m keen to know this because he’s always seemed ‘borderline’, but the doctors were at pains to tell me the ASD spectrum is a star shape and not a line. I know ASD is a permanent condition and you can’t have ‘mild autism’, but I will be pressing for a bit more of an opinion.

@ButterscotchWhip I totally understand you asking that. I remember wanting to know the same thing when my son was diagnosed but the thing is, like they say it's a spectrum.

My ds at 2.5-4 appeared to be very badly affected. We weren't sure if he would ever talk or grow out of headbanging or reduce the violent meltdowns but at nearly 8 he has. Autism still impacts him hugely but as he's gotten older it's easier to see the things he excels in, like making mechanical things work or building incredible structure out of blocks, he has bags of empathy and everyday he learns to express himself and his emotions better.

I guess what I'm trying to say is it is very hard for the people assessing your child to say what he may be capable of in the future. He will have strengths and weaknesses and some things may progress faster or slower than other children. Hopefully the report should show you a clearer picture.

@livpotter Thank you, that’s helpful to hear. Your ds sounds like he’s made amazing progress.

This cartoon is brilliant on the whole concept of the spectrum I think @ButterscotchWhip - I've found it really helpful for thinking about and understanding things.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

There is also a great BBC Podcast called 1800 seconds on autism: if you listen to Jamie (one of the hosts) talking about his experiences you can really understand how the spectrum is not at all a linear thing from "mild" to "severe".

Anybody looking from outside and thinking about a linear spectrum would say our experience with DD is definitely at the "mild" end, if you had to put a label on it, yet she was well over the threshold on the ADOS (even though I thought she aced it ). But so far (we were told she was probably autistic at 3, she was diagnosed at 4 and is now 7) she manages school and friends and life really well without too much upset. I was listening to a podcast earlier though about autistic girls and it pointed out that girls often do "better" (or are less "obviously" autistic) when they are young, and then it can be more apparent when they get older and the more complex social stuff kicks in. That was certainly true for me (I suspect I'm autistic too, though not Dx'd) and I could see that happening for DD. On the bright side, I've had a very happy adult life, found a good professional niche and lovely friendship groups where I fit in and do well, and I really think the same is possible for DD even if there are struggles along the way.

So in the end, I think you have to realise there are going to be highs and lows, and when they are so young (or at any point really) it's pretty impossible to predict what those will be and when they will come. All you can do is try to keep learning about your particular child's unique needs, which will change all through their life, and keep helping them find accommodations (and, as they get older, learn about themselves and hopefully be able to recognise their needs and learn to ask others to help get them met when they need that support).

I've found following autistic adults on YouTube and Twitter incredibly helpful to understanding the range of experiences they have and what worked/didn't work for them as kids, and what they value now as adults. Autistic Not Weird (by Chris Bonnello) is a good place to start. I also really like the Nurturing Neurodiversity website/Facebook/YouTube (although she's not autistic herself). I think she has such a positive and healthy outlook and although he has a lot of challenges her son Dexter is doing really well.

Thank you @LightTripper - very wise words. I’ve had ds’ ADOS report and he’s also well into the threshold which came as a surprise, although I think I was being naive, in retrospect. Great to hear your dd (and you) are doing so well. There’s no ASD in my family, or DH’s, so this is all so new to me and I find all positive stories very comforting at the moment!

That comic strip explanation is brilliant. I’m going to share it with family. x

Ah you're welcome. I hope the report was nice and didn't come as too much of a shock. I was lucky that DD's included lots of positive stuff, but I know a lot of reports focus only on the negatives (and even with positive stuff, I found the actual Dx quite emotionally hard - even though we'd been told to expect it and I couldn't say I was surprised exactly ... but I suppose in a way I clung to that uncertainty previously). So I hope you're feeling OK. I wish I had been able to see into the future then and know that DD at 7 would be a very happy girl - yes with challenges and a good dose of anxiety, but also lots of fun and love and friends and interests and spark and joy.