Autism assessment tomorrow

[Unwellhousehold]

We've waited 3 years for this appointment and finally, my son is being seen tomorrow!

Anyone else have children or themselves waiting on assessments? If you've already had one, what can I expect? Any advice?

Usually parents/carers go into one room and get asked lots of questions. Your child will go into a separate room and do a series of tasks.

Then the professionals talk together in private whilst you wait. They might need more info from school/nursery before you get the results.

It's 16 years since we went through the assessment process and I'm sure things have changed since then so any advice I could give you may be out of date.

But I wanted to wish you luck and say that the best advice I had was
Be honest and open and don't be afraid to say exactly how difficult things are.

We have an ADHD assessment tomorrow. Things are quite desperate and I was feeling hopeful until I read that the results appointment is not for a further four weeks.

We are wading through the days right now in chaos. It's really really hard.

@1DoesNotSimplyWalkIntoMordor @Redlorryyellowlorryblue thank you

Good luck

Different places do it in different ways. Assessment by SALT. Two appointments. One with dc and one could be with or without dc They were 60ish minutes each.

They talked to both parents and dc Discussed the forms we'd filled in. And school had filled in. Asked questions.

Got the results at the end of the second appointment. They said they only do Ados if it's not clear.

DC had sat in a noisy waiting room and was full on autistic by the time we got in the room.

Our experience went like this:

Referral - school and us completed forms describing DS

Appointment one:

In person, with DS, met with consultant paediatrician. He took developmental / medical history, and DS got weighed and measured. He agreed in this appointment that it needed further assessment and referred to MDT (SALT / Educational Pysch).

Appointment two:

Phone appointment, DS not present, questions mostly about sensory issues.

Appointment three:

ADOS, I waited in the waiting room, DS went in and played games / answered questions about his likes / dislikes / feelings / friendships. If he had wanted, I could have sat in the room with him, but he wasn't fussed.

Outcome:

Given over the phone in the afternoon after appointment three. If they hadn't been sure at that appointment, they could have done a school visit, but it wasn't needed.

I hope it all goes well for you tomorrow OP!

Best of luck with tomorrow. It's a very strange thing, feeling it can't come quick enough yet dreading it at the same time.

My advice is to prepare yourself mentally for the relentless questioning that may feel very negative. The tests are deficit based, and unfortunately that means we need to highlight all the things our children can't do, or that they do 'wrong'. I found myself wanting to jump to my DC's defence and tell them all the wonderful things they do. It's very hard to just go with this line of questioning but try not to take it personally. Just be as honest and thorough as possible - it's up to the professionals to decide if something is relevant or not.

I hope you get the answers you need xx

Following this thread - Ours is Friday!

That is a very important point.

But, uncomfortable as it is for the parents, my ds has a very different experience. He had found the questionnaires very upsetting, as they made him really look at aspects of his life that distressed him. For this reason how had not been looking forward to the interviews. A very pleasant surprise: he enjoyed them. He expected a grilling, like the questionnaires, but instead had what felt to him like undemanding chats, and got to play with toys. Ds was 12 at the time of the interviews.

My DS (9) just had his assessment at the end of Jan, been on the waiting list for a year. I thought the wait was over two years in our area so was pleasantly surprised when the letter arrived.

appt 1 - DH and I spoke on the phone to one of the assessors who asked loads of questions, from pregnancy to now and every stage in between. It lasted over two hours.

appt 2 - a week later I took DS to the face to face appt with the clinician and the lady who spoke to us the week before. He went in on his own and I waited outside. Lasted approx one hour.

The following day they rang me to confirm the diagnosis, so quite efficient and luckily didn’t have long to wait. The full report followed in the post a couple of days later.

Wishing you all the best.

Just be completely honest with everything they may ask you about your child. I found it really emotionally draining discussing my DS's struggles and development. You may want to look back in records for milestones, etc. I know I really struggled to remember a lot of them (my DS wasn't assessed until he was 13)

Thank you all for your advice, will take it all on board
@princesspeppax I will post our experience this afternoon for you

My child was 4 so.i.was present in the room during the play based assessment. There was someone playing with her and two observing and it was filmed. They did things like pretending there was a birthday party and dressing a doll. I was not involved in most of it but it was noted in the report things like showed mum the doll and only turned when I called her name not the assessor.

Good luck with it all. I was so delighted to have the assessment come up I didn't prepare myself emotionally for the diagnosis appointment and broke down there

How did it go @Unwellhousehold ?

My son is officially autistic, also possibly has ADHD, appointment went great, the pediatrician was so lovely, she gave us a referral to support services we previously haven't been able to access due to not having that official box ticked. We've got a couple of forms to fill out but that's it, 3 years of battling and begging for support. My son was so good today, he actually played with another little boy in the waiting room which was amazing as he's normally violent and aggressive towards other children.

When we arrived at the hospital they did basic height, weight checks which was nice, doctors went through my pregnancy history with him and his development history, asked about our initial concerns and his behaviour, a bunch of questions. With my son, it doesn't take a lot to figure out he's autistic, he's non verbal, stims a lot but is very intelligent for his age and ahead in some areas, so it's fairly obvious within 5 minutes of meeting him.

I'm still processing everything, luckily we already have SALT and SENCO working with us which has been massively beneficial but hopefully now we can access more specific support
We've been given a form for his SENCO worker at nursery to fill out so that's my next plan, get those sent off and go from there

Congratulations! Getting the diagnosis was the best thing for us. It's less obvious that DS is autistic than your son by the sounds of it, but the relief of having professionals say "yes, this is a thing, you're right" was immense. Especially after years of waiting. Well done you for getting through it. Obviously it's not the end, there will be EHCP etc now I presume, but this is a huge moment in the way to getting the right support in place!

Answer the questions like it’s their worst day not their best. A lot of people get ignored because they think “oh my DD or DS is fine- he’s usually ok and like x, y or z”. What they don’t realise is how much they cater to their child with additional needs. I can make my daughter very calm and when she’s with me most people think she’s perfectly normal. Except she’s 2- if she’s not with me, or her mum, she goes fucking ballistic. She can’t cope with changes to her routine- so guess what? We don’t change her routine. Which means MOSTLY she’s fine. But on a bad day? She’s like a little bomb going off. And that’s how she is with most others. The difference between her and her older sister who is NT is WORLDS apart…when her older sister was 2 she could stay with grandparents, friends, anyone- she was a happy child and engaging and sociable. DD3 is a different ball game.

Don’t be tricked into showing them he’s fine- let them know what it’s like when you don’t cater to his highly specific and intense needs. They’re the clues to what’s going on.

Ugh didn’t notice timestamp. Sorry /ignore