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.
Endymion said:I don't think the types of services I'm looking for would necessarily be provided 'by the taxpayer' as I'm mainly (at the moment) looking for information and perhaps access to courses that might help to further my understanding of Asperger's / myself.
There is a book called, 'The Complete Guide to Asperger's Syndrome' by, Tony Attwood, costing just short of £20, when I brought it new a couple of years ago. It is an amazingly good book and I recommend it with very high regard.
For a wealth of real women's and some men's experience of finding they're ASD in later life you could do much worse than look at the musingsofanaspie blog, quite a few of us as yet undiagnosed bods arrived here because of reading that and all the comments, which are quite enlightening. There's a lot to read and many 'me too' moments.
When I finally get a diagnosis (trying to sound confident rather than terrified that I'll be denied) I'm expecting little to nothing by way of support, even getting the diagnosis is horrendously unsupported really. Hard to feel like we matter to anyone but each other. Obviously Im2having an Eeyore day.
Yes, I've definitely had a few Eeyore days where there seems to be a lot of Pooh happening! Where's Owl when you need him?
I instinctively had a dislike for Wol's pomposity but loved him too, combined I think we can match his wisdom, or at least spell owl right.
Had all the Winnie the Pooh books as a child, would love to be able to retreat to a cabin in the woods and read them all again.
Same, I'd love to escape there sometimes. I only 'discovered' them with my own children though along with the AMAZING Dr. Seuss (esp. 'What was I scared of?'). I find these books add a certain something to the bookcase that you just don't get from ancient Greece!
Endymion said:I have been considering possible reactions from the people I might / have spoken to re. AS but not too deeply as I don't think I've properly acclimatised to it myself yet. It's partly because of this and the things you mentioned that I've decided not to tell anyone in my immediate circle yet, other than my partner of course. I feel protective of my adult children and don't want to scare them with this revelation until I have enough information about it to properly allay those fears - not least about the possible hereditary aspects.
Although the hereditary aspects are an important consideration, they are good to know as facilitating for them allows children with A.S. to reach their full potential ~ without psychological muck ups due to intellectual incompatibilities, on account of using abstract/subjective teaching rather than using the concrete/objective variant.
Consider for example abstract teaching that involves words rather than objects, whereas for example concrete teaching of numbers can involve money with perhaps fruit ~ one coin for one orange and so fourth.
Also teaching 'power' words that work most efficiently in general and cover the whole spectrum of a language in fewer words, have been shown to reduce or resolve communication problems. The English words translatable from the Esperanto language are one example of power words.
Keep in mind that many of the difficulties and problems involved with and known about A.S. were because of ignorance about facilitating people with the condition, and ignorance of it is now fading as knowledge increases. Consider for example 'Gut-Flora (bacteria) treatments and Glutathione high diets that alleviate alot of psychological and physiological problems associated with Autism in general.
On some knowledge so far available on the condition of Autism, there is a truly excellent paper worth reading via the following link:
Endymion said:Do you know what feels strange though? All of my life I've had trouble with 'small talk' or 'chit-chat' and only felt more (not completely) at ease during formal discussions. Obviously now I know why! But recently my discussions requesting the information I need seem to be the ones confusing people i.e. "Oh!!", "Really?", "For YOURSELF?", and I'm finding that disconcerting. These are phone calls after all, did they expect to be able to 'hear' AS?
Oh I so know what mean about feeling 'more' at ease during formal discussions.
Believe it not, some people with AS do have particular ways of speaking that are audible, such as a monotone voice and having difficulty in speaking, but the adage that once you have met one person with Autism means you have met 'one' person with Autism, applies. Females with AS though generally appear to be more able to communicate socially than males with AS, given that females are genetically primed to teach and rely upon speech for childrearing.
The thing with requesting information and getting those, "Oh!!", "Really?", "For YOURSELF?" statements is the Projection thing:
Deepthought said:Projective interactions; as involves people imagining you as you are not, or that you are not like someone else who is.
So totally classic and par of course, so be relative sure you will know of it again directly or indirectly, as stereotypes are fundamental to most people and get very much overused by some. Male type AS is the more viable stereotype as it is generally more obvious, whilst female type AS can be completely invisible in social situations due to 'masking' or in other words 'social camouflaging'.
Endymion said:I actually felt, for about 5-minutes, that I was the one 'doing it wrong' somehow but now I'm actually wondering if It's akin to those ridiculous comments people make about someone 'not sounding ...' or 'not looking ...' (insert sexuality / ethnicity / disability)?
Those ridiculous comments are not actually akin to but actually are the traits of sexism, ageism and tribalism ~ or just plain societal elitism ~ where individuality is a crime or at least unsettling and unnerving for many. Forgive them for they no not what they do sort of thing, which does not exclude us either to other extents of course ~ but hey ho; such is life.
I've just read the paper at the link you posted above and some results are starting to come in from this study:
Strangely, the results relate to the title of this 'Thread' in that the 2013 paper showed a link between 'Traffic Related Pollution' and ASD. Largely Diesel particulates (among others) although the study does say that rural areas are not exempt obviously.
The CHARGE study, though, does select for Developmental Delay in ASD participants and so doesn't offer results that would necessarily immediately correlate to HFA directly. It is interesting though and good to know that large studies such as these are taking place. Hope for the future! And Thank You for taking the time to post this here as I'd never have come across it on my own, up until I found this forum I barely used the internet at all so I'm not particularly adept at using it yet.
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.
I live about halfway up (mainland) Scotland, so hello nearish neighbour! I wondered if you had seen the 'Understanding Autism' course on Futurelearn? It seems to run fairly regularly and I found it very helpful and informative and a good link to other materials.
Here's the course: Understanding Autism