To ask what helped your autistic child?

[Annon12345]

Posting here for traffic, sorry!
What helped your autistic child thrive? Special school, play therapy, lego therapy, speech therapy, music lessons? The list is potential ideas is endless though nothing ive done so far has helped. Ds aged 5 recent diagnosis of asd. speech issues, sensory seeker who atm is making my life incredibly difficult with some annoying shouting and noise. I can't have a conversation with him, he has some speech for his needs but not social skills and unable to hold a conversation. Currently in Mainstream school with 1 to 1 and academically ok but unaware of world around his and appears lost and in his own world. I've read books, tried some activities but nothing seems to interest him. I'm frustrated, he's frustrated, life is hard work, exhausting. We need to apply for the ehcp but looking at ideas for anything that may be actually useful and where you noticed a difference?

Thanks

ABA. This changed everything for us and enabled some speech.

Calcium Folinate after discovering he has FRAA.

Tweaking his diet to enable better gut health.

Melatonin! This has made everything so much easier.

Propanolol in very small dose to help anxiety.

Anti histamine treatment.

And also a decent EHCP and the right school.

I forgot the melatonin amd setraline which were hugely game changing too

Eight years of intensive ABA.

Melatonin.

A school with a great SENCO.

Music. She is not academic (although managing in a mainstream primary) but really enjoys music theatre. Acting seems more healthy to me than masking!

Swimming.

Play therapy.

NVR for me and DH.

Mind you the price tag on all this has been £4k plus including the assessments.

Just managed to win tribunal for refusal to assess.

OMG I could have written this exactly. Sensory Integration with an OT was really helpful especially when we were toilet training. You learn skills that you naturally integrate into your life. Same with Speech Therapy.

Horseriding was fab for our boy, he's been doing it over 10 years now. It's great for Proprioception and core strength. Great confidence builder. But it's all down to your child's preferences & strengths! No point sticking him on a horse if he hates it, might take a bit of trial and error till you figure out what he loves.

Definitely agree with all the PPs re low stress environment. Calm home, lots of walks outdoors somewhere quiet. Don't set him up for failure by bringing him places he'll be overly stressed out in.

Something I decided early on was that I wasn't going to be the therapist that they seem to want you to be. My boy would just run away from me constantly because he was freaked out by all the homework from various therapists. I am his Mum first and foremost. Integrate all those important skills through play as much as you can, but it's extremely important for you to be his strength and his comfort. He has to trust you, because you're going to have to do lots of scary challenging things together. My boy is 15 now & towers over me. The day is long gone when I could power or muscle through things (hair and nail cutting, tooth brushing, Doctors visits etc). It's so important to find ways to get things done through cooperation & by respecting his needs.

Having pets/animals including riding lessons and eventually her own horse. Transformed her confidence.

Lots of great advice here! So nice to see how helpful other parents are, worth more than most official advice even if it’s well meaning.

Have been advised to give DS melatonin, he spent so long on movicol for constipation I’m a bit scared of another long term drug, even if it’s supposed to be fairly safe. Did it really make a huge difference?

Yes. Went from 2-4 hours to fall asleep to 1-2 and now (age 10) reasonably normal sleep patterns.

OT = occupational therapist?

As much sleep as possible for our DS-es and us - medication when necessary.

Lots of time outside for self-regulation and lots of physical activity.

The right schools which at the moment is different schools.

Yes 👍

@Phineyj thanks will consider it.

Special school and time.
He's 18 now and because we understand him so well he's mostly always chilled out and willing to do most things and go most places.

Melatonin is an absolute blessing for my ds. He never used to go to sleep and it absolute broke me. He was always tired and terribly stressed due to lack of sleep. 4mg at seven and he is asleep by eight. It has changed all our lives for the better.

AAC
ABA
acceptance
Respite , accept that others can care for your child
Speak to local parent groups and try anything on offer , your chiod may surprise you

This is interesting. How did you discover the FRAA? Did you have a dr helping you? I saw a study on it but wary of going DIY.

Low demand at home, and enabling him to do as much sensory seeking stuff as possible help DS. He’s a major sensory seeker, so we have a safe space in the garage for him to fling himself about in, with punching bag, mini trampoline (for when the weathers too crap for his outside one), and a grappling dummy (the sort wrestlers use to train with). He has ridiculous amounts of fidgets, slime, putty, stress balls, and we have a stash of them everywhere we go.

melatonin hasn’t been so great for him - he goes to sleep in about 30 min-1 hour now (which has been a big improvement), but he always wakes by midnight, and comes looking for us.

For us it was finding the right school and fighting for it at tribunal. We then had another fight to have him assessed for a social worker (and direct payments) and I had to do a SAR for this to shame our council into helping him.

At home it’s giving him lots of space and time to be himself, not enforcing neurodiverse customs and behaviours on him if he isn’t able. Lots of sensory input - jumping, climbing, running, baths, tight hugs. Entering his world by joining in with his scripts and stims - this absolutely delights him.

Benefits to buy him equipment and therapies and allow me to be his f/t carer.

A blue badge for outings - invaluable.

Enjoying him for who he is instead of yearning for the child he would never have been. Having an eye to the future but being open to things changing.

Occupational Therapy for Sensory Integration. Without any exaggeration, it changed his life.

Sensory integration therapy- instantly unlocked so much progress for our DC that I had honestly never thought possible

Buying a massive bed.

DS went to sleep really well, but would wake at about 1:30am every night, and we’d tried all of the techniques imaginable to settle him. This went on for a good few years. We were utterly exhausted, it was nothing for him to be awake for three hours or more every single night, and so I was awake with him. And then needed to be up at 6:30am to get ready for work.

It nearly broke me. We bought a nearly 7 foot wide bed, and just let him come in with us when he woke through the night. And four years on, that is what he still does every night. But he settles back to sleep immediately, and some nights I don’t even feel or hear him coming in.

Which means a better night’s sleep for him, and for me. Ok, it’s not ideal, I’d love for him to sleep through in his own bed, but I still shudder at how bloody awful it was for so bloody long and the bed has made the single biggest difference to him and to us.

My main answer is. Age.

My ds is wildly different at 9 than he was at 3 or 4.

Secondly, medication for his adhd and anxiety. Then his sleep meds on top. All have helped hugely. Also going to a special school although I wouldn’t put that first in line as he was already starting to make progress before he started there (when he was 7.)

Ds didn’t understand any instructions at 4.

‘Ds sit down’ for example, he genuinely didn’t have a clue what we were asking him to do. I used to manually sit him down and say ‘ds sit down’ for him to start to understand what I was saying. Took years. I had to teach him everything like this to help his receptive language.

Now at 9 he has conversations, and understands most of what you say and if he doesn’t understand he says he doesn’t understand and we simplify it for him so he does.

He said to me earlier - I’m going to play an April fools day prank on you mum, I said you’re a bit late for that ds, he checked his calendar on his iPad and said yes your right I’m 19 days late. He even knew it was on the 1st. And I’d not told him. Blows my mind little things like that when I think of him in his younger years.

He’s made more progress than I could of ever imagined.

I work I'm a special school and there are so many different things that help autistic children but every child is so different. We have speech and language therapists and occupational therapists on hand that really make a difference we also have a lovely pool and some children swim every day because that is what calms them and helps them regulate. Swing room as some just need to swing and hang upside down. Rebound room is big trampoline some need to jump. The list goes on but it's finding the thing that your son loves to do and that helps him the most. We also use pecs books for helping with communication and giving non verbal children a voice to tell us what they want and a visual schedule to show them what's happening now and next so the arnt anxious about what's going on

@ohyeahyousay - we did have doctor input. He was tested for the FRAA and found highly positive for the blocking kind. Feel free to pm me. I originally read the US studies and thought it was worth testing him for it and supplementing has improved his language a great deal.

Fascinating thread. We are just starting martial arts to see if he can learn some skills which will stop him attacking and biting his sister.

First session went really well, he managed it all