What would a sensory assessment from an OT involve?

Thank-you, Moonraker.  That's really interesting (and it's so nice to hear that other people have been/are where we are!).

My understanding is that the statementing system is to be replaced next year by something called an Education, Health and Care Plan; which will last until a young person is twenty-something (25, I think).  This is something I would really value for my daughter as she hopes to go to university and it would cover all of that period for her.  However, they are still finalising the details and so it doesn't seem ready to start.  I guess I need to make myself up to speed on that system now!

I'll have words with the psychologist next week, but I did *beg* the OT service when I spoke to them the other day, and they were not moved- they said the NHS does not provide sensory assessments (I get the feeling this is fairly new concept in relation to ASD?), and if I want one it has to be paid for.  She suggested applying for charity funding, saying that's what a lot of people do.  It's not that we *can't* afford it though- it's just that if we're going to spend such a lot of money we wanted to be sure it had value.  I slightly suspect that the assessment is *mostly* a method of selling their "intervention packages" which start at £300 for 2 months...

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.

Thank-you.

We have a final meeting with the assessing psychologist next week to formalise the diagnosis.  I guess (hope?) that she will be surprised and ashamed when we tell her we've already tried almost all of the listed recommendations and that they amount to nothing.  Perhaps she will then be able to offer more help to actually *access* any of the things.

If not, then I suppose I will have to brace myself to fight for every thing.  I've never been much of a fighter, but "needs must"!

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 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.

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.

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

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. 

Considering how many people say they get fobbed off or are otherwise unsatisfied with the way they get treated, it strikes me it might be better to spend the money on things that look likely to help than on something that could easily be a waste of time.

Speaking as a girl of a similar age (18) and with similar sensory experiences, I think it's good that your daughter can communicate to you what she thinks would help her. I never would, I'd feel like I was making a fuss. Talk to her more about her difficulties and what might help her cope; my mum drinks in every detail of what she can get out of me!

Unfortunate no-one has come back to you on this. I felt inadequately confident to respond, but will venture something to see if others take more interest.

When I first read this this morning I thought, the things they try to get away with charging for.... But to be honest maybe there is a legitimate assessment out there. I just take the instant view that someone's making easy money.

Sensory issues are common to most people on the spectrum. The trouble is it usually appears as a passing add on in explanations, as most people use the Triad of Impairments to explain autism, which doesn't cover this sort of thing.

So I'm racking my brains as to whether there's any institute out there with any kind of grasp of this to be justifiably able to charge £200. But you never know.

Not understanding touch and exploring touch is quite common, and you can buy safe objects on line for children who need to explore.

Background noise can be very difficult and people on the spectrum can hear things NTs cannot, and be upset or in pain for what seems nothing.

Someone out there, please come in on this discussion and tell me I'm wrong, but I've just got the feeling this £200 is a con. We don't get much real help with AS. But there's lots of woolly thinking consultants popping up with expensive cures and treatments - its worse than the cosmetics industry for cheats and chancers.