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Autism assessment

3 replies

user1464279374 · 10/01/2020 10:47

Hi there.

I don't normally post so sorry if there is already a thread or something on this!

I'm feeling a bit overwhelmed.

My 3 year old son has his final autism assessment at the end of month. He's had other mini assessments and speech therapy one-on-one, then in groups, and still isn't talking. He exhibits lots of other behavioural flags. We were waiting to start him at nursery at 3 (which he turned a few weeks ago) but we're now not sure if he's ready.

I just took him to a music class, one he's gone to before, and after 20 minutes of screaming and him trying to leave out the front door I gave up. I feel like things are getting worse. The group SALT classes seemed to improve his interaction and attention span but the Christmas break seems to have taken us back to square one.

We're due our second child at the end of March and it all feels like a lot of stress at once. Would love to hear any stories about what happens at / after these assessments and just generally tips on how to make things easier. I feel like he is getting increasingly frustrated at not being able to communicate. I'm also not sure whether we should be forcing things like classes when they clearly make him distressed, or whether to just keep pushing.

Thanks so much.

OP posts:
LottieBalloo · 10/01/2020 11:52

I had the exact same thing with DS. I'd try to take him to classes like Gym Tots and minis gym but he would get increasingly distressed and stand by the doors wanting to leave, or be more interested in the instructor's bag than the actual activities! I stopped taking him to these as he was obviously upset but we still went to playgroups etc. He was quite late to talk and other flags (lack of eye contact, no pointing until he started preschool and learned that behaviour, very set routines needed etc). Anyway, as it turns out, there's a reason he hated those type of structured classes - he massively struggles with sensory overload and his processing time for spoken language is a bit longer than usual so following verbal instructions quickly is impossible really. He hates unexpected changes, likes everything to be exactly the same, notices even if for example his toothbrush is in a different ('wrong') place on the sink, hates loud noises and beeping, yet loves to spin and throw himself around (due to sensory seeking). He's a very picky eater (likes to eat the same things literally every day) and speaks very much like a little adult. We had the assessment last summer and they said 'asd traits' but were reluctant to diagnose as he wanted to be sociable, which I later found out was a silly thing for them to say as most children on the spectrum want to socialise, they just (like DS) aren't often quite sure how. Peer interactions are hard because their peers are less predictable than the adults who care for them. DS is now in reception and is happy although he struggles with the sensory overload of a busy classroom; his verbal stimming of repeating songs and phrases out of context is also challenging for his teachers but they have a sensory room, which helps to regulate him (it has funky lights and textured wall patches etc). He is 4 and went to preschool at just after his 3rd birthday. It was a challenge, for us all, especially re: toilet training and getting him to understand that some areas (like stationery cupboards) are only for grown ups. BUT him having that experience was transformative for him. Now he has learnt these 'rules' (e.g. only grown up open external doors, at storytime we sit on the carpet), he applies them methodically (and actually gets cross if they change for any reason, but that's another issue!) And most importantly, he's a wonderful funny lovely warmhearted little boy whose brain is wired a bit differently (we and his teachers are fairly sure ASC, another assessment is hopefully imminent) so he needs a bit more support at school, but I am glad he had that preschool experience at the age he did, before he got too set in his ways!! I am learning so much about autism and ASC, google neurodiversity, it's so interesting. There's also a wonderful set of boards on MN under the special needs section, where we are all chatting and supporting each other in our different unique parenting journeys :)

ChildPsych101 · 12/01/2020 18:43

@user1464279374
First time answering on here; prefacing that while my brother is on the spectrum and I have >10yrs working with/teaching children and young people with autism, I am NOT a parent myself. I'm aware the experience at home is very different, and having never had to implement this under my own roof, please feel free to ignore me as appropriate. :)

A lot of the younger children I've worked with have a combination of sensory issues (like Lottie mentions with her son) - sometimes ear defenders help to reduce this, but overwhelming visuals (bright colours) or too many people can play a part as well. If that sounds like a description of the music class, it may be kinder to look at alternatives.

What can help, if the behavioiur is due to anxiety, especially for children who are relatively non-verbal or struggling to communicate, is to use either a visual timetable or a 'Now' and 'Next' board. A 'Now' and 'Next' board, or First-and-Then board, basically has two boxes that you put simple pictures or words on showing your current activity and what is coming afterwards. E.g. now 'lunch', next 'play'; now 'music' next 'home'. It helps children feel secure and that they know what is happening. The only rule is you have to stick to the board - if you've put play next, you have to follow through so your child can trust the board.
It might be that he really doesn't like the class/is having sensory trouble that makes it hard to access, but helping him know what's coming up next may help.

He'll likely settle back into SALT if he was making progress before; breaks are really difficult for people with autism to take and come back from, but the neural pathways he's been working on in SALT haven't vanished - he's probably not quite as 'at square one' as he seems. If you're going to keep going with any classes, I'd prioritise SALT, since communcation's where you think his frustration lies.

If he continues to be distressed at the music group classes, maybe try meeting one of his friends (if he's not close to any of them, choose a parent-child combination you feel comfortable with) at a familiar playground or similar during quiet hours? It gives him the option for social interaction, and you can agree on a set time so he knows when he is going home (I know play-dates are often at each other's houses, but it can be super stressful if another child is in your house touching your things and you can't tell them not to).

It's true that some children find nursery and school distressing, but for others the structure and consistency can be really beneficial. There are set rules about what happens when and what is and isn't okay, and these boundaries can be comforting for children with autism. I knew one little boy who at 4yo was an adorable little hell-raiser (because he was constantly anxious), but a year later, having started school, was used to the idea that days had structure, used a now-next board regularly and so could be calm enough to engage with others non-aggressively. His was an extreme change, but it does happen. I think the main precaution, whatever you decide, is to ensure the nursery or school he eventually attends have worked with children with autism and are knowledgeable on how to support him.

Again, I know it's easy to say this when it's not my child. What I can say is you're doing an amazing job - for him to be diagnosed (getting a diagnosis can be a huge challenge in itself) and attending classes so early is in itself a credit to you and your efforts to support him the best you can.

TLDR/Summary: Try a visual timetable/now + next cards; try ear defenders if he'll put them on; hang in there and be patient with yourself as well as your son - you're doing your best, and that is enough, even if it doesn't always feel like it.

user1464279374 · 13/01/2020 23:33

Thank you so much for these replies! It means a lot.

I have gone over to the Special Needs page and will look on there more frequently for advice and threads :)

Today we went to a stay and play session (basically a nursery but the parents stay) and he had a great time, stayed for 2 hours and no problems at all. Even interacted (sort of!) with some other kids. So we will be doing that as often as we can each week instead of the classes which cause sensory issues. Also makes me think nursery might be okay!

I will try this visual timetable and the cards. He is very funny about anything going on his ears (even hats) so the defenders might be a problem but will give it a go!

Thank you again - feeling much more positive and just trying to be as proactive as possible to help him and make him happy.

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