Sons asd assessment next week - so worried/anxious

[senmommabear]

DS has been on the waitlist for 2 years, he is 7. We know he shows a lot of signs of asd, this year school have also seen it although he tries to mask (hasn’t shown anything previous years). I know it sounds stupid but I’m worried sick because we’ve fought for help for over 5 years and it feels like the decision about diagnosis all comes down to this assessment. Has anyone else been through it who can offer any advice? Anything I can do to prepare? I’ve obviously written lots of things about his struggles to go through on the day but not sure if I need to do anything else.
I think I’m also worried because of the masking, what if he shows no signs at all on the day because it’s someone new and he won’t feel comfortable? It just all feels like it’s coming down to one persons opinion. Although I’m hoping that not the case as they have had the report from school and his speech therapist.

So it's a minimum 2 stage assessment.
For both mine we had a long "interview" with parents and DC to get a full medical and developmental history as well as current issues and presentation. Then there's the ADOS which has to be done with an unfamiliar person.
Anyone doing the assessments will be very well versed in spotting any traits even through masking, it comes through in the way they speak and interact.

I do understand. I was so worried my youngest wouldn't get a diagnosis because everything is so hard, school saw nothing, autism was the only explanation I could see and what would we do if they said it wasn't that?

Thank you for commenting. It’s such a worry isn’t it! Did you get a diagnosis? Last year school didn’t see anything but they’ve been asked for an updated report and they have said they do see a few things now so I’m hoping that helps. I just desperately want to get him the help he needs

They’re trained professionals who see kids with autism day in day out. They see masking all the time and they know what they’re looking for - the assessments are always carried out by people the child doesn’t know and they still manage to diagnose them. My child masks and is not obviously autistic to ordinary people in day to day interaction and was still fairly quickly diagnosed by professionals who knew what they were looking for and put him in situations that showed it.

To my knowledge, and certainly in my experience, it is not one person’s opinion - during the ADOS my son saw a speech and language therapist and some other professional I can’t remember for a “play” session, and we had an interview with a paediatrician. Those people, plus possibly others, had a meeting and looked at the outcomes of all that, plus school evidence, plus a specialist teacher observation as well before a whole team agreed his diagnosis. Even if your son doesn’t have that many people involved it still won’t be just one opinion.

My advice is to take in a list or timeline of things you’re concerned about, and anything that’ll help you remember when he did what as a baby and toddler - I found they wanted a lot of detail about his early milestones. And prepare your child for the process - not the activities themselves, but the idea that they’re going to go into a room with two strangers to play without me needed a lot of talking through with my DC in advance.

Where you are now was the hardest part for me. Once we all (us, DC, his teachers) knew he was autistic and how best to help him he has absolutely thrived. But those months of filling out paperwork and rehashing with loads of professionals all the things he couldn’t do, all the ways his behaviour was difficult and all his social struggles were absolutely heartbreaking and awful, I sympathise. It’s natural to find these assessments really stressful, but I can say for us it all worked out and was worth it.

Another one who has been through this. Agree about the timeline as a big focus on the early years. I also made a current list of things and added to it as I remembered things ( my DD was older). Good luck.

I was worried too even after our assessment process which sounds a lot more involved than yours. We did a questionnaire with info on behaviours and development from birth so it might be worth making some notes on history and things you have seen over time as well as what he struggles with now. I think they do spot masking - you would never guess with my son but certain play behaviours were noted and a school observation spotted things the teachers didn't notice. If there is any ND in the family and any sensory issues might be worth noting down.

We didn't have a 2 stage assessment, ds was diagnosed at age 11 in 45 minutes flat by an NHS specialist paediatrician only.

School ticked all the boxes to describe him as the perfect child. He said he couldn't pretend that he had a cup to put his toothbrush in as he didn't have one at home - it was that sort of random little thing that got him his the diagnosis, you really can't prepare for it. Oh I had previously written a long list of things I had noticed though, as part of the process.

Yes, now diagnosed.
In our case school saw almost nothing due tov heavy masking but everything the clinicians saw and heard left then with no doubt.

Also, our eldest was diagnosed later. We really didn't suspect autism (assumed ADHD but asked for combined assessment because of sibling) but the diagnostic process uncovered a lot of things and if anything eldest now presents as more "typically" autistic

Loads of the questions are about their behaviours around ages 4-5, so have a good think back about that - things like, if he saw something unusual would he draw your attention to it and get you to look at it? If you were unhappy or unwell, how would he respond? Would he notice? Did he show any repetitive behaviours or unusual speech patterns? Did he have any obsessive interests (could be wearing a certain clothing item, picking up sticks/stones, reading the same book over and over, knowing everything there is to know about dinosaurs etc), did he make eye contact and greet people when he met them etc.

But mostly just write down everything you’ve seen that makes you suspicious of ASD/other ND.

Ours was through NHS and was fantastic, they were super thorough, listened to everything we said, and got the measure of our son brilliantly. Good luck!

It won't hinge on the two meetings, please don't worry. All your parental evidence and supporting evidence submitted by school and any other reports by GP, SaLT or EP etc will also be considered by a multidisciplinary team of clinicians.
I had complete faith in our local NHS team, I knew they'd make an accurate assessment, irrespective of whether DC1 was autistic or not: DP and I had put on the form that we weren't sure whether we thought it was autism, as had school ‐we were open to any observations which might help us gain some insight into what might be causing DCs' very obvious difficulties, and we're quite prepared to keep on searching if the autism assessment turned out to show DC was not, in fact, autistic. I have worked with children and young people, many of whom have been autistic, for close to 3 decades, and I still wasn't prepared to bet on it. As it happened, they concluded DC was definitely autistic. When they called to deliver their findings, they phrased it in such a way that it was our 'choice' whether we accepted the diagnosis or not: they'd decided DC fit the criteria for a diagnosis, and should we wish to accept their opinion, they would notify our GP of the diagnosis, but, they made clear, we could choose to decline the diagnosis at that point and it would not be entered on DC's medical record. I'm still a bit unclear about why one might choose not to accept the diagnosis, after years on the waiting list, but just be prepared for that question.

@Holly485 That thing about the toothbrush cracked me up; it's exactly the sort of thing which DC finds impossible; anything pretend, imaginary, hypothetical, "If you could..., what would you...?"

We went through this process in the last few weeks and agree with all of the above. I was worried my ds would mask during the assessment but he still met threshold. I prepared by writing a long list of things I had noticed but they frame a lot of the questions around age 4-5, which took some digging around in my memory! Depending on age they may ask to do the child’s assessment on their own, which I was worried about but ds was absolutely fine. We were lucky in that they did parent and child assessment simultaneously, held a meeting to discuss immediately afterwards and we got the results at the end of the day. They were really kind, friendly and helpful so don’t worry.

My DC was diagnosed late. I find it really interesting than some pp were mentioning that the school did not see any behaviours but the child still got a diagnosis. I was under the impression that they had to see the behaviours in more than one setting?
The school asked for my DC to be assessed twice for ADHD but I was then told that the school didn’t mark them highly enough in the questionnaires so they didn’t get a diagnosis twice. They were off the scale at home. Eventually, they were assessed for ASD and got diagnosed. We had at least 2 stages, a meeting with a psychologist to take previous history and and an ADOS assessment. They filmed the ADOS so they could watch it back and look for behaviours.
I really wouldn’t worry about it op, my child is very good at masking but they were diagnosed mainly on what they said about relationships etc.
My other DC had a 3 stage assessment and got a dual diagnosis of ADHD/ASD. Ironic ,really, as my other child was so much more challenging and hyper as a child 🤷🏼‍♀️.
Good luck, I think it’s normal to be nervous and worried before the assessment.

Thanks so much for all the advice! I have made lots of notes of how he was when he was younger now so I will take those as well.

@Earlymornyawn I didn't mean to add ambiguity to an already fraught issue, just to emphasise that, if the OP's DC is autistic, the clinical team will see it. In our case, school did not say they didn't believe DC to be autistic, they ticked the 'Don't know' box (as did we) and submitted evidence of DC's challenges in the setting. I was glad they were clear about not knowing; I held DC's primary school teachers and SENDCo in very high esteem and remain so grateful for all they did for us (colleagues of mine albeit not in the same setting), but was aware they were not clinicians or specialists, so appreciate they kept open minds as to what could be causing the difficulties. After all, the observations and evidence of DC's challenges and learning differences would have remained the same irrespective of whether the professionals in the education setting believed autism was the cause. We would just have had to keep looking for answers.

I went as an adult to do mine. They're quite clever these assessors you know- the tasks just show if you have it. It's not something you can mask your way through iyswim - and I'm very good at masking!
Don't read up on it.
Don't try and tutor him.
For me it was fascinating, they explained what NTs would have done and what I did. It really helped me realise I am different - it wasn't all in my head.
So stop worrying.

Not sure if anyone is still on this thread but just wanted to update. We had the assessment done today and it went really well. Not sure why I was worried about masking as the questions/ activities she did with him were very specific and she said it’s obvious from the answers and actions etc if they are autistic or not. Thanks for everyone’s support!

Really glad it went well @senmommabear :)

DD was diagnosed at 15, so I am not sure if the assessments differs but we had a very long meeting where we went over everything about her from birth, all our observations about her behaviour.

She had her tests without us apart from the initial interview.

When we got the results back, the assessor picked up so many little things I would imagine most non-trained people would just overlook.

I remember a note about DD not understanding phrases, she came back saying "there was an odd conversation about having a bee in your bonnet. I don't wear bonnets and why would there a bee in it".

@reluctantbrityes that is how ours went today. I went in first and had a long discussion about what we have seen since birth etc and then he went in on his own for his bit. There were actually a lot of things she picked up on that I hadn’t before such a he made no eye contact, used a monotonous tone when talking etc. He couldnt understand any of the social situation cards, didn’t recognise any of the emotions she showed him, couldn’t explain what a friend was etc. She said she’s not allowed to give me the diagnosis as it has to go to panel but based on her assessment she said he showed every sign of autism she was looking for and that she thinks it will certainly be an asd diagnosis. Which is both a relief and a worry all at once!