Published on 12, July, 2020
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.
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.
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".
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.