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.
There is a website called Aspie Village and there are a number of Scottish community members there who might very well be able to advise you about your locality issues perhaps. AV is a secure (or private) website so you cannot browse it without registering, and it is socially more mellow and is definitely Asperger's friendly in terms of using the site. If you are interested, the link to the site is:
Obviously you might very well get the advice you need here too ~ but a more local approach could be worth while also maybe.
This is a postscript obviously, but with the:
Endymion said: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.
Complete and utter sarcasm coming next: 'fun' isn't it?
Basically the later the diagnosis the worse the support gets, because the older we are the less likely anything can be done for us therapeutically (supposedly) ~ hence the younger generation have the support, unless there are 'serious' coping difficulties involved. When it comes to the more able though, past about sixteen, the support options stop. Social care should though be dealing with adult support needs, but funding is not being provided due to the current austerity business going on, although Scotland is in terms of their health and social support reportedly better than down south, so it may just be a matter of getting the appropriate contacts, hopefully.
I live in a semi-rural area and a lot of my county is rural. My local NHS provide tailored counselling for those with ASD, although the specialised element of the counselling isn't widely publicised so you'd be forgiven for thinking it was generic counselling. Have you tried looking into that? In my area, you'd simply google 'talking mental health (insert name of county).
If you meet the eligibility criteria, you can also apply for PersonIndependencence Payment (a disability benefit) to pay for the additional costs associated with your disability. I have used this to pay for private support as I find a lot of the free support in my area is only available during office hours, which is when I'm at work.
Its not just rural areas, there is nothing in my county for adults unless I travel an hour in the car to the very north of it. There are services in the metropolitan county to the south of me but I can't use them as I dont live in that county. There is a self help group in a another neighboring county about 50 mins drive away that accepts people from anywhere so I've started using that but as you rightly point out services for us mature aspies are pathetically inadequate! I'm lucky in having a car but if I didnt there would be nothing for me at all!
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.)
Thank you Deepthought I will definitely try the AV site in addition to this one, the more information the better!
I suppose it does make sense that the younger a person is, the more likely they are to need support (or at least the types of social support available in my area). I certainly feel that I would have benefited from some of those options had they been available back then.
Thanks to everyone else too! It's reassuring to hear that my experience of being dropped into a void after diagnosis isn't unique and, more importantly, that you've all found ways around the inadequate system we've found ourselves in - I'll certainly be taking all of these suggestions on board and will look into PIP too if it could help me to access some of your suggestions.
I can normally be quite proactive about dealing with and organising practical matters but I've been hesitant in all of my enquiries so far I think because it still feels so strange saying "I have Asperger's". It's still so new, like getting used to being called 'Mum' except everyone believed I was a Mum and no-one seems to believe me at first when I say "I have Asperger's".
Endymion said:Thank you Deepthought I will definitely try the AV site in addition to this one, the more information the better!
Remember to take things slowly with the information, and keep it well in line with the practical application stuff, if you are not already so doing, of course.
Endymion said:I suppose it does make sense that the younger a person is, the more likely they are to need support (or at least the types of social support available in my area). I certainly feel that I would have benefited from some of those options had they been available back then.
I so know what you mean. The world is so much a better place for it, and I am glad to have gone through a period of history that is becoming ever more a distant history. I know more improvements need so much to be made, but made they are being.
Endymion said:I can normally be quite proactive about dealing with and organising practical matters but I've been hesitant in all of my enquiries so far I think because it still feels so strange saying "I have Asperger's". It's still so new, like getting used to being called 'Mum' except everyone believed I was a Mum and no-one seems to believe me at first when I say "I have Asperger's".
Make sure you get comfortable with thinking and saying, "I have Asperger's (syndrome)" before you get going with things that involve using it as a statement. For if you do not identify with it and own it ~ others can have trouble identifying with it too, and some won't or even can't ~ what with all that habits of a lifetime and all that state of affairs.
You and others as such will be to lesser or greater extents more Receptive to, Protective of or Projective about you saying and meaning, "I have Asperger's (Syndrome)".
Obviously communicating with autistic people will involve more Receptive interactions involving understanding, and comprehension. With people in general comes more the Protective responses ~ involving the tender loving care variety, all the way along to the 'run away it might be catching' variety. And of course ~ Projective interactions; as involves people imagining you as you are not, or that you are not like someone else who is.
If that helps any?
The question I ask is exactly what services should be provided (by the taxpayer) for adults? Most support which does exist for adults (and home educated children) comes from the private and voluntary sector.
There aren't private or voluntary sector adult Asperger's services in my area either, I've looked!
I don't think the types of services I'm looking for would necessarily be provided 'by the taxpayer' as I'm mainly (at the moment) looking for information and perhaps access to courses that might help to further my understanding of Asperger's / myself. I imagine there must surely be CPD courses available to those working in social and healthcare services in my area, for instance, and would like to find out more about those.
It does help, thank you!
I have been considering possible reactions from the people I might / have spoken to re. AS but not too deeply as I don't think I've properly acclimatised to it myself yet. It's partly because of this and the things you mentioned that I've decided not to tell anyone in my immediate circle yet, other than my partner of course. I feel protective of my adult children and don't want to scare them with this revelation until I have enough information about it to properly allay those fears - not least about the possible hereditary aspects.
Unfortunately the route to obtaining that information is calling the various advice lines to explain what I'm looking for and why - it's getting easier with practice though and I suppose I could see all of these calls as practice runs for how to open the conversations with people face-to-face at some point in the future.
Do you know what feels strange though? All of my life I've had trouble with 'small talk' or 'chit-chat' and only felt more (not completely) at ease during formal discussions. Obviously now I know why! But recently my discussions requesting the information I need seem to be the ones confusing people i.e. "Oh!!", "Really?", "For YOURSELF?", and I'm finding that disconcerting. These are phone calls after all, did they expect to be able to 'hear' AS?
I actually felt, for about 5-minutes, that I was the one 'doing it wrong' somehow but now I'm actually wondering if It's akin to those ridiculous comments people make about someone 'not sounding ...' or 'not looking ...' (insert sexuality / ethnicity / disability)?