(HFA) Asperger's doesn't exist in rural areas?

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.       

          

Parents
  • Reading Endymion's post I relate so much to their frustrations.  I was diagnosed with Asperger's 2 years ago; I was then 56 years old.  Life had been, was, and continues to be a struggle and I have had several mental breakdowns and been in and out of the mental health system since age 21. I am no longer able to work, and am in receipt of ESA (WRAG) and basic care element of PIP.  My biggest trigger is environmental noise, and I recently approached my GP for help because I'm facing overwhelming anxiety as a result of a building site just started behind my garden.  I live in a rural Cornish community and thought that I had finally found a place of relative peace and quiet after decades of town and city living.  But my life has started to fall apart again, and I don't think I can cope with any more stress; my personal reserves simply aren't what they were. I wrote to my GP recently explaining my problems and difficulties, which are not only as a result of having an ASC but also relate to Complex PTSD.  It was easier to write it down than fumble through a 5 minute session in the surgery. My GP rang me, but is unable to offer me much support.  There are no support services for Autistic adults in the whole of Cornwall, which I find astounding.  It's like you get to 16 and you are expected to cope, yet adulthood brings some of the biggest challenges to anyone's life, let alone that of an Autistic person.  Not having being diagnosed as a child, I have struggled in my own way to cope without the benefit of intervention.  It's been hugely traumatic and I feel so very isolated. All my GP can suggest is drug therapy, which does not work - I have a neurological condition, not a chemical imbalance, and anyway who wants to spend their lives drugged up to a point of being so out if you cannot function?  How does that help anyone?  Her other suggestion was to self refer to what appears to be a PFI which might be able to offer me something like CBT - which has also never worked.  I read somewhere that on average a person with Autism has lower life expectancy than a neurotypical person - no wonder, when there are no support services for Autistic adults in some parts of the UK.  Suicide is not unknown and that's no surprise. Is there anyone out there also in Cornwall who has found some kind of support service that I and my GP don't know about?  Any advice gratefully received.

Reply
  • Reading Endymion's post I relate so much to their frustrations.  I was diagnosed with Asperger's 2 years ago; I was then 56 years old.  Life had been, was, and continues to be a struggle and I have had several mental breakdowns and been in and out of the mental health system since age 21. I am no longer able to work, and am in receipt of ESA (WRAG) and basic care element of PIP.  My biggest trigger is environmental noise, and I recently approached my GP for help because I'm facing overwhelming anxiety as a result of a building site just started behind my garden.  I live in a rural Cornish community and thought that I had finally found a place of relative peace and quiet after decades of town and city living.  But my life has started to fall apart again, and I don't think I can cope with any more stress; my personal reserves simply aren't what they were. I wrote to my GP recently explaining my problems and difficulties, which are not only as a result of having an ASC but also relate to Complex PTSD.  It was easier to write it down than fumble through a 5 minute session in the surgery. My GP rang me, but is unable to offer me much support.  There are no support services for Autistic adults in the whole of Cornwall, which I find astounding.  It's like you get to 16 and you are expected to cope, yet adulthood brings some of the biggest challenges to anyone's life, let alone that of an Autistic person.  Not having being diagnosed as a child, I have struggled in my own way to cope without the benefit of intervention.  It's been hugely traumatic and I feel so very isolated. All my GP can suggest is drug therapy, which does not work - I have a neurological condition, not a chemical imbalance, and anyway who wants to spend their lives drugged up to a point of being so out if you cannot function?  How does that help anyone?  Her other suggestion was to self refer to what appears to be a PFI which might be able to offer me something like CBT - which has also never worked.  I read somewhere that on average a person with Autism has lower life expectancy than a neurotypical person - no wonder, when there are no support services for Autistic adults in some parts of the UK.  Suicide is not unknown and that's no surprise. Is there anyone out there also in Cornwall who has found some kind of support service that I and my GP don't know about?  Any advice gratefully received.

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