Mr Angry!

So, as of Tuesday it seems I don't have what I thought I had (chronic depression and severe social anxiety disorder) for however long. Instead I have Aspergers.

I understand that this will supposedly make a difference to things but I don't understand why. I know I need to 'adapt' to the idea that I have something different and it will take time. 

I'm no more or less vulnerable, struggling, stressed and numerous other things than I was Monday. I'm still indoors, on my own, daren't open curtains or windows and afraid of people as I was Monday.

Instead I just feel angry, more than angry even.
Angry that I can't find anything which helps me. I'm not a parent, don't have a carer, live alone and have no existing support. 99.9% of information I can find is for parents, relatives, carers, employers and everyone else just not the poor bugger who has had this dropped on him...
Very angry because I am now at sea. I have no idea what's going on, what I'm supposed to do, who I'm supposed to talk to or where I'm supposed to go for help. I think my life has just turned upside down.
Extremely angry that just having the label is probably going to make the difference between qualifying for help and being ignored. Why should I have gone through the past few years? It's disturbing that the label of 'Autism' or 'Aspergers' seems to act like a magic wand.**
Positively livid because I feel like I've lost between 5 and 15 years because nobody realised or understood enough to suggest what was really wrong.
Incandescent rage because when I spoke to my local council, the first thing they said after I mentioned Aspergers was that meant I needed the 'Learning Disability Team'. I can't speak for anyone else but, as a former croupier with a fairly high IQ (140+) I found it a huge insult. 
***please note this is my experience. Other people may have found it very different, which is really my point. It's not about your label, its about your circumstances.
For those who want to know, I'm 43 and had no inkling of this until it was mentioned by my GP a few weeks ago. It has been a bolt from the blue.
Parents
  • One advantage is that you have a condition about which much is written down, or on the web, even if not always immediately obvious.

    Previous labels or explanations may not have provided much resolution.

    Granted a lot of autism information out there is aimed at parents of children - adult information is less readily accessible, but as more and more children pass into adulthood, adult information is improving.

    I didn't get a diagnosis until I was 55, and only found out because I was professionally helping people with autism and recognised myself in one of the profiles I was trying to write support guidelines for others to help.

    Adult support isn't good, as you've already discovered. Adult Services are not switched in yet. You either come under the procurement management for mental health or for learning disability, and you may find them reluctant to help unless you also have a mental health or learning disability 'comorbid' with autism. This can be really annoying if adult support comes under learning disability and the services are mainly at Mencap centres, and no-one thinks you are eligible because you have a job.

    Having said that there are books and websites that can help. A useful guide is Tony Attwood's The Complete Guide to Asperger's Syndrome (Jessica Kingsley Publishers), but it isn't all inclusive and is primarily about children. Tony Attwood has a website also. Look for Jessica Kingsley Publications on line - there are books addressing the workplace, socialisation, romance, everyday living etc. Often they have chapters by different people giving personal perspectives. One group of books is the adults Speak out about Autism Series, usually with Luke Beardon of Sheffield Hallam/Sheffield Autism Centre as one of the editors. There are autobiographical books - that give insight - Jon Elder Robison's Look me in the Eye (US experience), March Fleisher "Understanding the Unfeasible".

    The NAS web pages do have a lot of information if you can see past the parent based and child based stuff. There is a lot of ready information there.

    GPs have been slow to pick up on this. You may feel disgruntled you've lived to 43 unhelped, but it is not uncommon for this to happen and many people never get diagnosed.

    The point is there is information out there. Find it and gdet reading. The more you read round it the better it will seem. As you say, you haven't changed it is just a different label.

    But understanding autism can be really useful. You can work out to some extent what sociaisation you can undertake and what stresses you out, by knowing how it works. You can get a better understanding of why things are difficult and what you can do to ease things.

    Read the postings in here especially living with autism and work & volunteering etc.

Reply
  • One advantage is that you have a condition about which much is written down, or on the web, even if not always immediately obvious.

    Previous labels or explanations may not have provided much resolution.

    Granted a lot of autism information out there is aimed at parents of children - adult information is less readily accessible, but as more and more children pass into adulthood, adult information is improving.

    I didn't get a diagnosis until I was 55, and only found out because I was professionally helping people with autism and recognised myself in one of the profiles I was trying to write support guidelines for others to help.

    Adult support isn't good, as you've already discovered. Adult Services are not switched in yet. You either come under the procurement management for mental health or for learning disability, and you may find them reluctant to help unless you also have a mental health or learning disability 'comorbid' with autism. This can be really annoying if adult support comes under learning disability and the services are mainly at Mencap centres, and no-one thinks you are eligible because you have a job.

    Having said that there are books and websites that can help. A useful guide is Tony Attwood's The Complete Guide to Asperger's Syndrome (Jessica Kingsley Publishers), but it isn't all inclusive and is primarily about children. Tony Attwood has a website also. Look for Jessica Kingsley Publications on line - there are books addressing the workplace, socialisation, romance, everyday living etc. Often they have chapters by different people giving personal perspectives. One group of books is the adults Speak out about Autism Series, usually with Luke Beardon of Sheffield Hallam/Sheffield Autism Centre as one of the editors. There are autobiographical books - that give insight - Jon Elder Robison's Look me in the Eye (US experience), March Fleisher "Understanding the Unfeasible".

    The NAS web pages do have a lot of information if you can see past the parent based and child based stuff. There is a lot of ready information there.

    GPs have been slow to pick up on this. You may feel disgruntled you've lived to 43 unhelped, but it is not uncommon for this to happen and many people never get diagnosed.

    The point is there is information out there. Find it and gdet reading. The more you read round it the better it will seem. As you say, you haven't changed it is just a different label.

    But understanding autism can be really useful. You can work out to some extent what sociaisation you can undertake and what stresses you out, by knowing how it works. You can get a better understanding of why things are difficult and what you can do to ease things.

    Read the postings in here especially living with autism and work & volunteering etc.

Children
No Data