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.
Oh thank God - I thought it was just me!
I was diagnosed at 37 years old, last year. And, it feels like I was thrown to the wolves since! It sorta felt like, "Oh congratulations - you're autistic... now off you pop and deal with it."
The diagnostic Psychiatrist even finished the session with, "Now, what you need to do is go find yourself a nice Asperger's girl." She had no idea just how many shades of offensive and unhelpful that really was.
I was referred to a few counselling services - but I've quit them all as they're wholly inadequate. One Counsellor just kept asking me how I felt as she did her knitting. Another kept referring to my "learning disability".
You're given this life-changing news and then not helped to assimilate it, or to seek healthy ways to address some of the newly-explained challenges in your life. What limited resources are available to the newly-yet-late-diagnosed adult are wholly inadequate - whereby they, from what I can understand and have so far experienced, are delivered by Neurotypicals solely trying to teach you how to fit the Neurotypical model! They have little true understanding of Neurodivergent perspectives, and each time I've asked how their particular service has been specifically adapted to accommodate Neurodivergent cognition, it turns out that hasn't even been a consideration!
For me, some sort of Autistic mentoring scheme would've been immensely helpful - with some sort of late-diagnosed adult who had already been through the process, endured the unique challenges, and had practical insight and advice as to how best to adapt your (thus-far compromised) life to better accommodate your new-found diagnosis towards self-actualisation. So, why is it that I keep getting Neurotypicals trying to graft their Neurotypical mindsets onto me?!
Hell, there wasn't even a reading-list provided when I was diagnosed. I too have found the majority of the literature to be unhelpful, and at times, overly simplistic / patronising. You just keep reading dumb advice like "make sure you put on deodorant to make yourself more likeable" or pseudo-practical such as, "there is a 'guaranteed interview scheme' for those who declare themselves as autistic" (something which I strongly suspect was devised by Neurotypicals).
Now, a year into my Asperger's life, I'm a little wiser; but on the whole, I still feel like I'm floundering without any practical supports or means to turn things around. Now, I at least know why I don't work in this world. The problem simply remains that I have no idea on how to fix that.
Excellent post @Evan. I suspect there's an unwritten agenda re Aspie adults with late diagnosis. it goes along these lines: "Well, they are still alive, they managed to get through life so far, so they clearly don't need help." There's also the bias against intelligence, as though simply because we are extra bright we can somehow sort our problems. Wrong! When I spoke with my GP a few days ago she said (and I paraphrase) "Seeing as you are clearly managing..." No, I am not managing. I am falling apart inside but neurotypicals just don't see that. If we were to throw ourselves on the floor and start screaming every time things got to much maybe we'd get some help - but a lifetime of holding things in until we feel fit to burst, lest we be seen as mad, bad, destructive, attention seeking (pick your term) means we appear to be coping when we are not. Mental health suffers until we have slid so far someone might finally see we are in need of help, but by that time we are in such a mess it takes ages to pick ourselves up again. Yes I am angry. I foolishly thought diagnosis would be the beginning of doors opening, but no such luck. I feel like I've been abandoned to sort it out myself. 'It' being this weird wild, disturbing, frightening mess of a world that has been alien to me all my life but hey I guess I'm the problem! I even had to explain to my GP that Autism is a neurological condition, not a brain chemical imbalance (she wanted to fob me off with drugs). I've tried joining a local group on FB but despite saying it's there for everyone including adults all I have seen are posts that relate to (neurotypical) parents and their autistic children. I don't have kids, I don't do kids, in fact kids are one of my biggest stressors due to their random behaviour and noise. Being female, many people think that makes me really weird. So...where do we go? Who to we seek help from? Because as far as I can see what services are available are all aimed at children - but what happens to those children when they become adults? If things go on the way they are all the work that's been done to assist them will simply be for nothing since there's apparently naff all for them when they become adults. In desperation I have decided maybe it's up to me to start some sort of support group exclusively for us adults. Anyone else thinking along these lines?
It's recently been suggested to me on three separate occasions that I start my own HFA group!
Although it does seem to be the only way that I'll ever be able to share ideas and resources with others in my area (assuming I'm not the only one, which I doubt), I don't think it's something I'm quite up to yet - it's only been a month since my diagnosis and I certainly don't feel qualified to be running a group to help others like myself when I'm not even sure if I know how to help myself yet! (*note to self, remember to breathe.)
If it wasn't for this forum I know I'd be feeling a LOT more lost. At least on here I've 'met' numerous other people facing the same, or similar, challenges to myself but it's not ideal. As such a public forum there's a limit to what can be discussed.
I'm not even exactly sure what it is I'm looking for, other than information which is difficult enough to find as many of you have mentioned too. Courses perhaps but even most of those appear to be aimed at 'dealing with' ASD more generally, rather than 'being' HFA in particular and what exactly that means, what defines it and in what ways it's 'diverse' as opposed to typical.
Even if I could find a satisfactorily detailed account of what "empathy deficit" means, that would be a start.
Personally I think, and feel, that I DO care about the people who are in my life. A lot! I believe it's unreasonable to expect that same level of care about everyone else though. There's just so much about this diagnosis that I don't understand and it's shocking that all of us seem to be left to muddle along with no direction in our attempts to understand what exactly all of this is and means.
My diagnosis of HFA doesn't really leave me with much more to go on than if they'd simply said 'Odd' or 'Different' (No *%$^ Sherlock) and left it at that.