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.
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.
Hi Panda's mum,
Sorry to hear you're getting shafted by CAMHS.
I'm too looking into this area, as I need an OT assessment but may not find an OT appropriate to my needs within the council.
As I'm going through this process too, I can't really give you any advice as I'm a bit stuck myself but I would advise to prehaps have a search on the College of OTs website to prehaps find an independant OT and enquire if any one locally is sutiable for your daughter. This isn't going to be easy as you may not know where to start but asking things like do they have any qualifications in dealing with young people with autism (e.g. degrees but also any credits or courses they may have done for something called Continous Professional Development (CPD)).
As your daughter's 16, I would advise her joining a local school sixth form (not sixth form college as they're different or an academy if you can) and then apply for a Statement of Special Educational Needs (Statement of SEN). You can try getting this even though she is over 16 but it will be a struggle (might start looking at lawyers who know Statments of SEN law and Further and Higher Education law too). I might be able to recommend law firms (hopefully you won't need them but just in case) but it does depend on what area you live in.
The Statement of SEN may also open doors for you to get OT, Speech and Language assessments and support your daughter needs it.
There may be advocacy support for you if you choose to go down this route or getting supporters to just help you alog the way. For the latter try "SOSEN" or blogs/websites like Specialneedsjungle.
http://sossen.org.uk/
http://www.specialneedsjungle.com/
A charity called IPSEA is amazing at this sort of thing:
http://www.ipsea.org.uk/
Anyway another route to try is getting her a Learning Difficulty Assessment (LDA). This isn't related to Learning Disabilities. It is similar to a Statement of SEN but can last up to a young person's 25th birthday. The only trouble is that it gives less legal support than a Statement of SEN so this is something you will need to bare in mind.
Most councils do LDAs through an agency called Connexions and they call them things like Learner Support Plans and Moving On Plans etc.
More info from my earlier forum discussion here: http://community.autism.org.uk/discussions/health-wellbeing/education-matters/s139a-learning-disability-assessment
Also try the charity Disabilty Rights UK as they can give much more detailed info. Need to try their Students email and helpline. They can also help with lots of different things too.
http://disabilityrightsuk.org/contact-us
If you want support for you and your daughter from social services then have a look at the Council for Disabled Children's website. They are a charity and have membership with NAS amongst others. They have a free legal handbook available online which can help you through the field of law from social care to housing and education. Some of the info may be slightly out of date but most of it can also be applied to adults too (e.g. adult social services etc).
http://www.councilfordisabledchildren.org.uk/resources/cdcs-resources/disabled-children-a-legal-handbook [Look under Children's Services first]
I will also get back to CAMHS and demand they give your daughter follow up support. Maybe Intense World (forum member) could help out here with her infinet knowledge of NICE guidances etc.
I hope this gives you some help and explains your options.
urspecial