Published on 12, July, 2020
Hi. I'm mum to a newly diagnosed 16 year old daughter. She is "high functioning" and I guess that's why only in the last couple of years have there been any problems stemming from what now turns out to be her autism.
On her assessment results, the pyschologist notes that our daughter seems to have some sensory integration/processing difficulties, and recommends a specialist assessment from an OT. It turns out that this assessment will cost £200. I wondered whether anyone could help us understand what it will offer so we can decide whether or not to have it?
Our daughter is very articulate, and says that she often feels as if she is "not touching enough" - she does things like stretching out her fingers, and "trying to touch interesting things" to increase her tactile stimulation and has often said she would like a weighted blanket.
She is also sensitive to noise, though mostly this is only when she's already feeling anxious. She talks about noise cancelling headphones, but I think that what she actually wants is ear defenders, since she doesn't want to listen to music- just to "block out" noise from outside.
When she is stressed she likes pressure against her ears and eyes, and says that she finds hats to be calming because they press on her head.
We could *buy* a weighted blanket, noise cancelling headphones and a hat for little more than the cost of the assessment; but we're unsure about whether the assessment would reveal more than what our daughter is able to tell us about how she can be helped.
Is anyone able to explain what the assessment would involve?
Thanks!
Sarah.
Hi PandasMum
Your sensory description of your daughter could be describing my son who is also 16 with a diagnosis of ASD.
My son's paediatrician who was involved with the diagnosis referred him to OT for a sensory assessment as she felt his difficulties were significant, we are lucky to have an OT who specialises in autism at our local hospital. I think your daughter has already worked out for herself strategies she finds helpful - the hat and headphones are things my son uses for the same reasons. He tried a weighted blanket but found it made him too hot but you can buy weighted gilets/body warmers too.
Other things that were suggested were Theraputty and stress balls which I bought for a few pounds from amazon, these are squeezed to get tactile input and can help when anxious. My son cannot use escalators or lifts as they make him feel 'weird' that's because the body is moving but the joints and muscles aren't working and the brain doesn't get the correct signals so he just avoids them. In times of stress he can feel as if the ground is moving under his feet, stamping his feet helps, it's the joints and muscles working that give the brain signals that the body is moving easing the ground moving feeling.
I would push for an OT referral that you don't have to pay for, OT is health ie NHS and you shouldn't have to pay.
Is your daughter still at school? With a diagnosis she should be able to stay at school until she's 19 and you can apply for a statement yourself. We are in Scotland where the terminology is different but I would contact the Education Rights Service of the NAS for guidance.
You say your daughter doesn't meet the criteria for PIP, have you applied? I didn't expect my son to be awarded but he was, again ask NAS for advice or have a look on the site for more info
I'm not a fighter either but as you say 'needs must', your daughter is lucky to have a great Mum who is prepared to fight for her and I wish you lots of luck and stay strong.