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.
Panda's mum said:Thanks, both.The assessment would be provided by an Occupational Therapist, employed by the NHS as part of something called an "NHS Traded Service". Apprently, they irrationally believe that people's schools will fund it. Living in a fantasy world!I am quite frustrated because the diagnosis has been provided by CAMHS, who said that if they diagnosed, they would discharge my daughter from their care into the "Autism Service" (because autism isn't a mental health need). It turns out that the Autism Service doesn't "serve" children or families, but is a service for schools, and even they have to pay (£90 per visit) for it.There was a list of recommended actions with the diagnosis. The sensory assessment (£200), a parent support group (runs weekday daytimes, so only for people who don't work), a parent training course (not running 'til May and even then on weekday daytimes, so no use to us), that we get advice about education options from the Parent Partnership Service (whose advice turned out to be that we should visit the sixth forms and ask them about their SEN policies!) and that we now claim PIP (the "new" DLA), for which we don't meet any of the criteria.Essentially, our daughter's going to be diagnosed and then discharged into no services at all, as far as we can see. She's already 16, so I don't think they will offer a statement (certainly no mention of it so far) so no one actually HAS to give her anything.I'm so so thankful that her problems are "only" crippling anxiety and difficulty maintaining friendships.
The assessment would be provided by an Occupational Therapist, employed by the NHS as part of something called an "NHS Traded Service". Apprently, they irrationally believe that people's schools will fund it. Living in a fantasy world!I am quite frustrated because the diagnosis has been provided by CAMHS, who said that if they diagnosed, they would discharge my daughter from their care into the "Autism Service" (because autism isn't a mental health need). It turns out that the Autism Service doesn't "serve" children or families, but is a service for schools, and even they have to pay (£90 per visit) for it.There was a list of recommended actions with the diagnosis. The sensory assessment (£200), a parent support group (runs weekday daytimes, so only for people who don't work), a parent training course (not running 'til May and even then on weekday daytimes, so no use to us), that we get advice about education options from the Parent Partnership Service (whose advice turned out to be that we should visit the sixth forms and ask them about their SEN policies!) and that we now claim PIP (the "new" DLA), for which we don't meet any of the criteria.Essentially, our daughter's going to be diagnosed and then discharged into no services at all, as far as we can see. She's already 16, so I don't think they will offer a statement (certainly no mention of it so far) so no one actually HAS to give her anything.I'm so so thankful that her problems are "only" crippling anxiety and difficulty maintaining friendships.
The NHS can not charge you for such things. There is something strange about this. They can't say "well she could have..." and then say it's chargeable. Adult social care do an OT assessment of your daughter but they are very behind the times with autism generally and may not offer a specific sensory assessment.
I just had an OT assessment from a council OT adult social care and she was clueless. The report was a waste of time. I was then referred for a full assessment of need to adult social care and they suggested writing to my GP (who knows nothing of my auditory hypersensitivity or autism at all) or my consultant (I don't have one!). I ended up providing them links to the NAS website and telling them to ask me what they wanted to know as I am the best person to state what issues I have and what I need.
I would get in touch with the CCG lead of children's services to complain about them trying to charge you and also get in touch with your MP about it.