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.
I am not sure that there are any specific ASD services I would like to have available to me, but the one thing that would make - and would have made - a big difference to me is a properly funded mental health service. I have spent most of my life depressed and/or anxious, and the paths that I have been pushed down are a joke. That would be true even if I were NT, but it is particularly galling when the offerings are framed around a certain definition of 'normal' and the one-size-fits-all resources discount other realities.
I think it would be cost effective for the NHS to fund and provide ASD - framed mental health services, because mainstream services (from various things I've read on here) are frequently accessed by those of us with ASD on a repeat basis but to no avail - because they're obviously not tailored to suit ASD perspectives. No wonder they don't work! Similarly many of the prescriptions people are fobbed off with which sounds crazy even to me (without a medical degree) as it would seem obvious that a chemical 'fix' can't help with a structural difference.
I really believe that, post diagnosis, we should be offered properly tailored counselling to whichever level each individual requires it and, perhaps even more importantly, information and contact details enabling us to access things such as these forums where we can learn more about our diagnosis.
Research papers, reading lists, CPD and other courses providing an insight into ASD ... all of these things (Simply information!!!) wouldn't cost much at all in comparison and would only take the diagnostic services getting their act together for them to be provided.
Maybe the people who have suggested we set up our own groups have a point, perhaps the only way these things will begin to be provided are if we (the already diagnosed) start to use our experiences, and experience, to help the newly diagnosed. Basically a real-life version of this forum that we can access locally.
Agree with that first paragraph. We're being shoved from pillar to post, wasting precious NHS funds on things that'll never work simply because GPs feel they have to do something but are at a loss what to offer. I have even had to explain to my GP that a medical 'fix' has never worked for me,and never will because I'm not suffering a brain chemical imbalance, I have a different wired brain. When you are telling your GP this stuff you know they simply haven't had any training at all in Autism. I'm hoping to try some Dialectical Behaviour Therapy (DBT) shortly. Different from CBT, which never worked for me, it has similar roots but works with the person rather than trying to change them, to help them deal with the most distressing effects of having ASD or HFA (which is my case is environmental noise) and lessen the emotional impact. I'll try anything once. ,EMDR worked for me, but that was in regard to Complex Post Traumatic Stress problems, which are very specific and not necessarily related to being autistic. Your final paragraph is also very much to the point. Just left my local NAS group as it appears to be run entirely by neurotypical mothers for their ASC children. Nothing there for or about adults that I can see, so once again I end up feeling like an outsider. If you have any suggestions as to how and what we start to become a focal point to help one another and others, I'd be interested. Maybe we need to set up a web page?
In my experience most GPs are a complete waste of space. They earn high salaries when 90% of the time all they are dealing with are minor ailments like sore throats. It's rare to find a GP who has any knowledge of ASD. I can remember my GP saying that there was nothing wrong with me back when I was in primary school. He even accused me of being lazy.
DBT sounds interesting. I have been deeply frustrated by CBT, and the way my responses to situations are considered 'irrational' - see the thread on 'fear of phones' by way of example. It is perfectly rational to avoid using a phone when you can't have a satisfactory conversation on one.
I couldn't start a web page, it's taking me all the IT skills I possess as it is just to have found, and now learn to use, this page.
I think, as far as online services are able to help, this one is exactly what I've needed so far but I do completely agree that we should all have access to 'real-life' services of some description in our own areas. I'm not completely sure what services though, I'm still to new to all of this and in the process of trying to digest the news of the diagnosis itself at the moment.
My ideal service in my local area would allow me to meet other HFA adults once in a while (maybe once a month) just to compare notes I guess. I'm not looking to 'make friends' as such (I don't want to 'do lunch' or activities with people.) but it would be nice to touch base with people who actually understand. This service would be run primarily by the HFA adults themselves and be in a position to collate all of the various websites / chat forums and other online services available for new members to choose from and access so that people aren't left to stumble upon them if their lucky! The service would KNOW about any other useful services / resources available locally and have contact details for each as well as full information about EXACTLY what each provides, who / what it is most suitable for and guidance as to how to go about either enrolling on or claiming for whatever people require.
A One-Stop Information Hub. I guess that's what my dream local service would be. Somewhere to turn up and not feel judged. Oh, and if it was my IDEAL local service, it might even have a quiet room I could use after a day of trawling around the town until my head feels about to explode! I could just walk in and sit, or lie down, in a quiet place with no interruptions and no explanations and recover myself before heading 'once more into the breach'. (They might even have a punch-bag in there for really bad days!)
I'm sure most of you will have a better idea, having dealt with all of this for longer than me, what an ideal service would look like but, at the moment, that's mine.