Greetings,
I just sent this email to the NAS. For anyone who isnt familiar with my situation, you will be able to gather it from this :-
Greetings,
I wrote to you before asking about diagnostic services for adults in my area and you were very helpful in providing the relevant information, but given that information and having seen my GP and contacted various other people, I have found that there are NO available services in my area.
Of the list of diagnosticians who supposedly deal with adults, all of these are just outside my local NHS area (I live in North Ayshire and most of the services are in Glasgow). As appears to be general policy, they will not accept referrals from outside their own local area. This is a fundamental problem which I think needs to be urgently addressed because as a result, these services are completely unavailable to anyone in my situation. While my local area has ample services for children, the professionals concerned do not deal with adults. Adult services of this nature are something which I think is overlooked in general and I think the NAS could help alot by addressing this issue, for the sake of many adults in need of these services. Even something as simple as accepting referrals from a nearby area when there are no equivalent services available in that area would have a huge impact on this problem in the short term.
I would encourage others to write similar emails because adult services seriously suck and the problem needs to be addressed.
When we asked if anyone could talk on our behalf at the NAS Conference this year, that was one of the main issues.
At a conference we recently attended there were two adult services spoken about.
One being Aspire which is only available in the Midlands and the other one being the Youth Offending Team, for teenagers who have commited crimes.
The other services were all for children.
Greetings,
Here is the reply I got :-
Dear Peter,
Thank you for contacting the National Autistic Society, your email was
forwarded on to the Autism Helpline.
Your concerns are understandable and we are aware that unfortunately
there are not enough diagnosticians or support services for adults
throughout the UK.
You may like to contact our Policy and Campaigns Officer for Scotland,
Shabnum Mustapha, who campaigns with the Scottish Parliament on all
sorts of issues, on behalf of those with autistic spectrum disorders as
well as their families. You can contact her on telephone number: 0141
221 8090. She can listen to your concerns about what you feel the
National Autistic Society should be campaigning about in Scotland.
-- SNIP --
I plan on doing just that and thought that perhaps we could do so as a group. What do you think?
Could you send her an official e-mail on behalf of AFF expressing all the concerns, and also telephone her and tell her about your personal situation?
Its the same in Wales.
Maybe the London area is getting a much higher percent of services, anyone in that area that knows otherwise?
They didnt give me an email address - just a phone number but I will be sure to mention aff when I phone
Good, shame they don't have an e-mail.
Use whatever you like
I havent heard anything back from their campaign person. Usually you get some kind of acknowledgement after sending someone an email (I eventually got the email address).
I'm sending another one and then I'll try phoning next week. Does that seem impatient?
Just got this reply : -
-- SNIP --
I completely understand your frustration at the lack of adult diagnostic
services outwith Glasgow. The NAS has been raising concerns about the
lack of services and about how funding has been awarded by the Scottish
Executive to services in the central belt when there is also a great
need for appropriate adult services elsewhere in Scotland.
The NAS have submitted written evidence to the Health Committee at the
Parliament calling for a short inquiry into services for adults with
ASD. I will be meeting with MSPs on the Committee over the next few
weeks to discuss the issue and will definitely raise your concerns.
I can assure you that the NAS is committed to promoting services for
adults across Scotland through our evidence to the Health Committee, by
raising the issue in Scottish Executive working groups, the Cross Party
Group on ASD at the Parliament have discussed the issue, we launched a
UK-wide employment campaign to promote employment opportunities for
adults with ASD, and we published a consultation last year called a
'National Autism Plan for Adults' which you can download from:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=391&a=4134
I will also be discussing this document with MSPs.
-- SNIP --
Well it seems like they are aware of the problem and are trying to do something. Lets hope it actually yields results in the short term.
It's sad to see that there are so many obstacles stopping aspies who want to get an accurate diagnosis; uncooperative doctors, uncooperative parents, lack of resources, misdiagnosis, professional incompetence and apathy.
I guess many people assume that there is little or no need for diagnostic services for adults, as they assume that autistic people either remain very disabled or are cured by the over-promoted early interventions. I guess that many people think it could not be possible to remain undiagnosed with autism to adulthood, because if you are genuinely autistic you can't talk or function, and would be unable to avoid being identified and/or institutionalised before adulthood. I don't think there is enough awareness of the size of the problem of psychiatric misdiagnosis or underdiagnosis. If we want the issue of adult diagnosis to be taken seriously we need to do something about the level of ignorance that seems to exist.
Greetings,
I think the problem lies with the professionals themselves. As you will probably have read, I eventually got diagnosed privately (AS, ADHD, OCD). Since then its been a complete nightmare. I've been trying to see if I can get medication for the ADHD but noone is willign to deal with it despite the fact that the NHS has a full set of guidelines
Can you get a private prescription for the meds? And if they work and help you could then have grounds to get it on the NHS.
Just an idea as I have no idea of the cost of getting a private prescription.
Though of course you should never have to do that, and it seems criminal when people who smoke can get anti smoking medication on prescription, for example, when they made a choice to begin.
I could probably never afford what it would cost - plus doing that would shift all responsibility for what happens as a result onto me.