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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Top tips for ASD assessment

22 replies

Theundecidedmum · 14/08/2022 20:55

I've posted in special needs but no response so I hope I'll get some takers on aibu.

My Dd(10) finally has an ASD assessment coming up. It's taken us years to get here so I'm really anxious for it to go well. I'd be grateful for any tips on how to prepare for it, help DD deal with it, and what sort of info to take along.

Dd is highly anxious so very likely to find the experience very stressful. And I'm worried that I'll be very distracted worrying about her and may miss to say/explain the details to the professionals so I feel I want to go on prepared. Thanks for any advice.

OP posts:

Sunnyqueen · 14/08/2022 20:58

Might get flack for this we didn't prepare at all. Obviously I thought out what I was going to say to them but the main point is just go in there and let them be themselves. We got the diagnosis there and then.

Original poster

Theundecidedmum · 14/08/2022 21:00

That's actually very reassuring @Sunnyqueen . I'm so worried I'll say/do the wrong thing and not get the diagnosis. I should have a bit more faith in the assessment process I guess.

OP posts:

mattressspring · 14/08/2022 21:02

They will ask you everything they need to know, the questionnaire is standard so will be prompting memory and information from you. They don't expect you to turn up with every example, but you will be asked questions to help them find it.

NiceTwin · 14/08/2022 21:02

I wasn't allowed into my dd's ADOS assessment, so nothing for me to say. Also, no preparation, what will be will be.

Are you sure you will be in with her?

mattressspring · 14/08/2022 21:04

Oops sorry I thought it was a first appointment not an ADOS. Yes it's led by the clinician with no input from parent. They know how to spit really subtle signs in the response they get.

Pillowbed · 14/08/2022 21:05

Look at the Triad of i
Impairments and think of any examples that your child shows on anything on there.

Write down a list of all your concerns.

Pillowbed · 14/08/2022 21:08

My children found taking their special interest to the assessment with them helped to calm them as they could show and talk about that at the beginning to relax them.

I told them that they were going to see a really nice lady and show her their toys and play with her while Mummy was talking to the lady's friend in another room.

We worried that they wouldn't 'see' what we could see but they sure did with both of my maskers.

Creepymanonagoatfarm · 14/08/2022 21:10

Trip to favourite fast food place afterwards?

FatEaredFuck · 14/08/2022 21:10

Write a list of every symptom you'd like to discuss. Before you leave, check the list and make sure you've mentioned every point you need to.

Start writing it in advance so you can keep adding to it.

My husband and I create WhatsApp multiple groups for things like this. Any behaviours that might be useful to film you can send to the group to keep it all together

Pillowbed · 14/08/2022 21:13

Ooh yes, the promise of a treat afterwards is a good thing to distract them from the anxiety of meeting a stranger.
"
After you've had a great time playing with the nice lady, we can take a trip to McDonald's, won't that be fun?"

mattressspring · 14/08/2022 21:20

FatEaredFuck · 14/08/2022 21:10

Write a list of every symptom you'd like to discuss. Before you leave, check the list and make sure you've mentioned every point you need to.

Start writing it in advance so you can keep adding to it.

My husband and I create WhatsApp multiple groups for things like this. Any behaviours that might be useful to film you can send to the group to keep it all together

We never got the option of 'free' discussion. That came in order to get the referral but once we moved into assessment phase it was fully structured questions. I was over prepared with DD but for DD I didn't prepare at all!

WestIsWest · 14/08/2022 21:24

I would pay close attention to your DD behaviours before the assessment. I found after filling in the forms before the assessment I realised I’d said no to things that I was then suddenly seeing and just hadn’t clocked before, I don’t know why. I had to email them and say I’d got it wrong.

Lougle · 14/08/2022 21:29

For DD2, we had the ADOS, which I sat in on, because she wouldn't go without me, but had no input on. I also had the 3Di which was computer based. It was really helpful to be able to give specific answers to the questions, because they score the question. So for example, if I was asked 'Did DD2 ever use odd phrasing?', because I was able to say 'Oh yes, she used to ask when the grass would stop watering her feet if it was wet, or she'd ask if her legs would grow like tree legs grew, or...., or....' she scored highly. Obviously, if you can't remember, that's fine, but the more information you can give, the better.

With DD1, I wasn't allowed in her ADOS. The parental interview was carried out over video call. Tbh, after meeting DD1 for 5 minutes, the psychologist had come to the conclusion she had ASD, so her questions were more about asking for clarification or confirmation. We had a 10 minute break, while she confirmed that the ADOS had agreed, then we got the diagnosis.

They really will pick up on everything, don't worry.

Original poster

Theundecidedmum · 14/08/2022 21:50

Thanks everyone this is really helpful.

@Lougle that is interesting they let you sit on your daughter's assessment. I think my DD will struggle to go on by herself. So it's a bit of a relief to know you can go in if necessary.

OP posts:

TheFormidableMrsC · 14/08/2022 22:02

ASD parent here. Also recent ADHD diagnosis. I actually don't think you need to prepare as such. They are looking at your child, they know what they're looking for. I just answered questions and DS was observed. With the autism diagnosis he was very little so they asked me to get him into a nursery setting and then took over from there. His actual diagnostic appointment was basically confirmatory after assessment by SALT and paeds, specialist HV. They went to nursery, came to our home etc. The more recent ADHD diagnosis came after the school asked me to seek a referral. That was largely a form filling exercise and then a long appointment with the consultant. At 11, DS was able to speak for himself and articulate his difficulties. I hope you get the outcome you are looking for. It does open doors for support and that makes all the difference.

giggly · 14/08/2022 22:03

I conduct NDD assessments, generally parents are allowed to sit in with under 14 for both initial assessments and ADOS.
we generally have had significant information from parents , school, GP , SLT etc prior to this appointment so have a fair idea of what’s going on.
While it is usual for parents to provide additional information I think you’ll find that the very specific questions we ask/tasks provide all we need to know to determine if the child meets the diagnostic criteria.
Dont stress honestly

clareykb · 14/08/2022 22:05

My 8 year old dd has just had her ados she actually really enjoyed it. Said she read a story and made one up with toys so it all seemed fairly relaxes. I didn't go in but she came out really happy and I took her for a promised Costa treat afterwards.

Original poster

Theundecidedmum · 14/08/2022 22:58

@giggly that is interesting that parents can attend. Our letter says the DC is expected to go by themselves. I hope if she refuses to go that one of us can go in with her. It would be awful if they just refused to do the assessment after all the waiting to get her an appointment!

OP posts:

Original poster

Theundecidedmum · 14/08/2022 22:59

@clareykb that is lovely your DC found the assessment such fun. I really hope my DD has a similar experience.

OP posts:

Duckmylife · 24/11/2022 20:12

Relax, be natural, and whatever you do, don't play it down. If it's bad, then it's bad, and you need to let them know that. They will unfortunately be looking for your child to say that she's fine, so if you aren't sure whether something is bad or not, play it up not down. It's worth it.

I'm so glad that you managed to get a diagnosis! 🤞You get to go in with her, then hopefully she will find it a bit less stressful. Remember how important this will be for your dd's future, so if she really needs you there with her, then find a way to do so. Explain to them how anxious she is. If they really won't let you in then don't worry about it. Just make sure your dd knows to just be herself and say exactly how she feels.

Good luck, hope it all goes well x

Oh and, I know this is unrelated, but have you thought about an ehcp? Once your dd gets a diagnosis it is extremely important to start working towards an ehcp asap. It will be an uphill battle but I'm 🤞 and you daughter will need it for secondary school. You said in your post that she's 10, so she'll be in secondary next year or the year after, and it will most likely take longer than that for an ehcp. Sometimes I can take several years, especially to get all of her needs agreed on and written in, so please keep this in mind!

BadgerFace · 24/11/2022 20:18

My 9 year old DD had a lovely time too! We had an assessment in September. We had the parental interview over the phone first and found that much if those questions didn’t fit her and so worried that her differences weren’t ‘extreme’ enough but we had a diagnosis after her in person assessment with a speech and language therapist. The things he picked up in were very interesting and done if which I hadn’t really been aware of. On the face of it DD is a very chatty child who loves adults (and so was fine going in by herself knowing I was outside the door which helpfully had a window) but it turns out that the way she talks gave the SLT all he needed.

we didn’t go any preparation beyond letting DD know she’d be having a chat with a nice man.

DocMarteens · 24/11/2022 20:20

I took school reports for review - we could see issues emerge year 1 onwards in school, and I was asked to write a letter of parental concerns so there was the education psychologist's view, school, parents and direct observation.

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