Since my recent Asperger's diagnosis I've been trying to learn as much about it / myself as possible but I just keep coming across the same introductory information on the subject again and again across the internet and in every booklet and leaflet available. I just want to speak to someone about it, to question a little deeper than the same regurgitated information and TO FIND OUT WHERE I GO FROM HERE!
I've called several of the helplines asking for information (At least the NAS one replied, unfortunately the information pack was just another repeat of the exact same information.) but I'm just told to wait for a call back which never comes - unless it's normal to wait weeks for said call back?
There are absolutely no services relating to (older) adult Asperger's anywhere near where I live! This is crazy considering there ARE in fact services for children and younger adults (up to aged 25) or for those requiring services such as supported accommodation.
If I was diagnosed with just about anything else I would receive a prescription or health advice or referral to appropriate services or, at the very least, an Elastoplast!! Is it normal to be simply dropped into a void like this? Is a secret element of Asperger's that it only affects people living in cities? (Because I don't remember reading THAT anywhere!) This online community is the most help I've found and although I'm so grateful to have found it (on my own, by accident) it's not the place for obtaining the type of personalised information I need most. Everyone else seems to have access to courses and groups and something called PIP and, well, just support to understand what comes after diagnosis. Since finding this online community I've actually felt a lot better, more comfortable, with my diagnosis as I'm seeing that there are lots of people out there like me after all (which is a huge relief) but I seem to be the only one living in the entire North of Scotland!?!? Doubtful as that seems, it's the only rational explanation for the complete lack of services.
I don't regret for a minute that I have this diagnosis, it explains everything, but the advice to "Get a Diagnosis" as it will "allow you to access the services / support / information available to help" definitely doesn't seem to apply if that diagnosis turns out to be HFA / Asperger's.
The tale is much the same here in West Yorkshire - follow up support following my diagnosis consisted of the standard NAS "What is Autism" pamphlets and the advice to come here and visit the forum. The NHS provides nothing - even the assessment unit where I was diagnosed is (under)funded by the local authority - and all local NAS support groups are parent/child only.
Actually, that's only half true. I was promised Occupational Therapy by the assessment unit, but two years later this still shows no sign of happening. The unit is overwhelmed by 500+ diagnostic referrals each year, but is funded for only 150, so I have been told - they simply can't currently afford to employ any follow up staff.
There is also a private autism service provider locally, which I'm trying to access. If you are a fan of Franz Kafka, you will love the application process...
- Unit is a private non-profit, so requires funding.
- The NHS is does not fund this, therefore you have to obtain funding from local Social Services.
- There's no Social Services team covering autism. The only access point for me is the Learning Difficulties section - despite my diagnosis specifically saying that I have no intellectual impairments. They were not impressed when they found out that I went to a mainstream school, where I got 10 'O' levels and four 'A' levels. (After 12 months, I still don't know if I will be accepted.)
- IF I do get social services funding, I still have to pay a Service User Contribution. If I cannot afford this (I'm on ESA, so I can't), I have to claim PIP (18 months and counting, I'm waiting on a second appeal tribunal hearing.)
- IF I also do get PIP, then I can finally go on the waiting list for autism tailored counselling - for a maximum of ten sessions and no repeat referrals.
In the past, I have had generic CBT counselling and found it hopelessly inadequate at dealing with my autistic traits. By luck, I have also had counselling with a counsellor who had some autism training (albeit in a different context.) The difference was immediately noticeable, and the outcomes far more positive. I firmly believe that autistic people struggling with mental health problems need this kind of tailored service if they are to be as successful as mainstream services are for non-autistic people. That is not "special treatment", it is "equivalent treatment", and I believe that it is discriminatory that an autistic person has to jump through so many more hoops than a non-autistic person simply to access equivalent healthcare. (I have been writing a blog article on this subject, which I will post here when I have it knocked into shape.)
A very late reply to your post, I've just noticed you are also in West Yorkshire. Forum rules on anonymity prevent from going into more details.
Out of curiosity, which assessment centre did you attend? And what were the tests?