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 too don't feel personally up to starting a group. I'm just not in a good enough place. I don't personally have empathy deficit, but it seems to me that the neurotypical world is the entity that has the empathy deficit to people like myself! I have an extreme sensitivity to environmental situations that it's almost impossible to avoid/escape, which leaves me exhausted, frightened, utterly mentally and emotionally depleted. I lose the ability to function at all in such situations, but because when the stressors are not present, or are present at a low enough level to allow me to retain a level of functioning, that leaves most casual observers believing I'm doing OK. My partner hasn't a clue what to do to help me, so I feel even ore isolated. And we're back to that thing about intelligence equals the ability to solve one's own difficulties, which most certainly is not the case! I just don't know what the answer is. Until it is generally accepted that adults late diagnosed with AS or HFA need support just as much as other people on the spectrum, we'll remain a silent group struggling with often unbearable burdens. Some may choose to opt out of life because it is simply unbearable and there's no end of the daily stress in sight. What we need is a public champion, who can raise the issues we face and speak about what it's really like for AS and HFA to struggle through without support. I'm personally sick of seeing the tiny minority of adult Aspies in the public arena being held up as successes as though everyone on the so called mild end of the spectrum has or has had the same opportunities or levels of family support to make similar successes of our lives. I see it as an excuse not to put resources our way. The myth that one can achieve anything with AS is just that. For every Chris Packham, there are thousands of people struggling daily to stay sane in a crazy world, having to cope with situations we ought not to be left to deal with alone. Everything is aimed at supporting children, and while it's good to see there are services out there for youngsters I feel that few stop to think about the adults who never had the benefit of the services our modern youngsters can receive. Rant over for now!
Also, what happens to these children and young people currently about to 'come of age' and suddenly dropped into this void we're experiencing? We've almost all been given our diagnosis after a lifetime of, somehow, muddling through and (for better or worse) developing coping strategies, self-help techniques, or simply learning through trial and error. Today's young members of our little group have been diagnosed as children and have grown up with all available services in their area directed at helping them, aren't they going to be even less prepared than we were to be dropped into this void? Why does no-one seem to be thinking about this?
My cynical view is that it's hard to make any money from it and it isn't life threatening. The NAS is in reality a government service provider providing services only for things that the government is willing to fund. The NHS is only interested in things that are life threatening so HFA is viewed like cosmetic surgery is.
Another problem is that society looks at things one-dimensionally in terms of academics. Anybody who doesn't have problems with literacy and numeracy doesn't have problems. Most help and support for kids in school or adults with learning difficulties relates to literacy and numeracy.
Then, there are the taxpayers who read the Daily Mail and their grudges against undeserving minorities.
@Arran I believe your theory holds water. I also believe that those holding the purse strings deliberately use our high intelligence against us. It's dishonest and discriminatory. I do believe, however, that the stresses of unsupported living for those adults who are HFA and AS can become life threatening. I have been on the edge many times due to circumstances I can't control or escape from, and my mental health has suffered hugely, as it is suffering again at present. So then we have recourse to the mental health services, which are not tailored to people with HFA or AS. So we chase our tails in a never ending circle. HFA and AS adults as a 'cause' are simply not 'sexy' enough to attract interest and funding. People en masse get sentimental about issues involving children, and then there are all the parents who are driving the demand for services. Good for them, but I often think that it's at the expense of the adults who have survived and continue to live a life that is often isolated, unfulfilled and constantly stressful. I'm constantly seeing NAS related and other groups raising funds for autism, but what exactly does the money go on? I don't see any of it coming the way of HFA and AS adults. Thus our individual quality of life is compromised, and certainly in my case life is lived in terms of daily survival, and not much beyond. Don't even start me on the Daily Mail readership!
BetterLateThanNever said:I also believe that those holding the purse strings deliberately use our high intelligence against us.
The problem is that HFA turns educational theory on its head and society hasn't moved forwards and factored it into the system yet. IMO AS and HFA is where IQ tests fail. Another problem is that far too many children and adults fail to master basic primary school level literacy and numeracy, which is deemed to be a more pressing issue, resulting in people with HFA being victims of a numbers game. Without sounding racist or xenophobic, mass immigration hasn't helped because it has resulted in Britain having to deal with large numbers of people who's knowledge of English is very limited. There have even been cases of parents of children with ASD who voted Leave in the referendum simply because of large numbers of eastern European children at their school which are diverting resources away from British children with SEN.
BetterLateThanNever said: I'm constantly seeing NAS related and other groups raising funds for autism, but what exactly does the money go on? I don't see any of it coming the way of HFA and AS adults.
I want to know as well apart from six figure salaries for senior officials and glitzy events that people with HFA or AS do not benefit from. As I have previously mentioned, nearly 90% of the money the NAS receives comes from the government and it's ringfenced for specific individuals or projects. The remaining 10% is still much greater than independent ASD support groups receive but they often provide better and more focused services on a shoestring. The NAS is not a charity that I would recommend people with HFA or AS, or parents of children with the condition, give money to.
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.