Autism and Sensory Help

[sarahlucy]

Hello

My youngest son is almost 5 years old and has recently been diagnosed with autism. He also has global developmental delay and is non-verbal. He was recently scored as functioning around 6-12months apart from gross motor skills which he scored around 36months.

I feel that he is suffering really badly with sensory issues. He constantly flaps his hands, covers his ears with his hands, strongly reacts to certain sounds. At school he has been constantly turning the lights on and off, as well as constantly turning the taps on/off. He struggles with crowded and busy environments. He is not attempting to mark make in any way, regardless of both myself and the teacher using as many different ways/materials as possible. He runs up and down looking at the lights and is now constantly trying to stand on his head. He is always running around and just seems to be completely overwhelmed and over stimulated. He grinds his teeth and tenses his whole body both when excited and when frustrated. He likes to feel the whole perimeter of the environment he is in. He looks at things from the corner of his eye or does lots of blinking/strange eye movements.

He somehow manages to cope at school with a one to one, although can only tolerate 3 hours a day.

It is really hard to see him so affected by the environment and not really having much idea of how to make it better for him. It seems that every sense is really affected especially sight, sound and touch. In addition he craves lots of movements and needs to constantly stand on his head. This worries me as he tries to do this at the top of the stairs, in the middle of the school hall etc..

The school are also concerned, and we both feel that the sensory side is really stopping him from learning/progressing and functioning. He has an OT but has only been seen once (in May) and has not had a follow up appt. I have wrote a letter of complaint to the head of service, as despite constant requests for help the OT service are just very dismissive.

It is really making me anxious/worried to see him so affected by everyday life and the environment. At home, he is happiest and would stay there all the time if he could.
The OT did suggest doing a sensory profile which I filled in months ago, but have never received feedback. I am chasing this up, but feel that locally the service are not really helping or interested. I must be on the phone to them at least three times a week and have now, in desperation written to the local mayor.

I have tried taking him to sensory rooms at our local childrens centre, but actually and weirdly he seems to be worse in those environments. I have also tried sensory toys, which do not seem to have much affect. He is happiest lying on the bed at home, in a quiet environment and this is where he is most calm and content. Not sure how that could be replicated at his mainstream school though and obviously he needs to be able to cope with the outside world.

Thank you - sorry for such a long post. Any ideas/advice would be really appreciated :)

sarahlucy - Have no advice, just wanted to say your son sounds exactly like mine, so will be hoping for some great advice. I do so feel for you, most days my heart breaks for him as he just seems to get no peace from the constant sensory seeking.

As someone with major sensory issues because of autism brain wiring, I can sympathise with your ds. I work in schools to help them sort out situations like this. Often the local autism charities know of people who can help 'test drive' the classroom and the day for the children and find out how to minimise the sensory stuff.
Sometimes it's stuff like flickering overhead lighting that others don't really see (but we do).

Or computers that whirr and buzz (but others don't notice)
Or overhead projectors for the whiteboards etc that whine and fizz (but others don't hear it)
Or walls so covered in things to look at that we get totally disorientated and overwhelmed.

Most of it can be sorted out by finding us the quietest and lowest sensory bit, giving us a quiet room to retreat to, or even a pop-up tent in a dark peaceful-ish corner to hide in for a while.

Playgrounds are Hell for us, and often we need to be somewhere very quiet for breaks and lunches - not the dining areas and amongst people leaping and screaming.

Also, school uniforms or school clothes are often uncomfy to wear and mean we're battling the feel of those too.

The standing on the head thing is one way to block out the overload, I think. He has to learn that he can only do it for X amount of time at X point in the day and in X places - so a visual timetable of some sort to help with that is important. We like rules. If we can understand them, we'll follow them (er, usually!)

Not sure if that helps. But it might.