Published on 12, July, 2020
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.
This is a postscript obviously, but with the:
Endymion said: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.
Complete and utter sarcasm coming next: 'fun' isn't it?
Basically the later the diagnosis the worse the support gets, because the older we are the less likely anything can be done for us therapeutically (supposedly) ~ hence the younger generation have the support, unless there are 'serious' coping difficulties involved. When it comes to the more able though, past about sixteen, the support options stop. Social care should though be dealing with adult support needs, but funding is not being provided due to the current austerity business going on, although Scotland is in terms of their health and social support reportedly better than down south, so it may just be a matter of getting the appropriate contacts, hopefully.
Thank you Deepthought I will definitely try the AV site in addition to this one, the more information the better!
I suppose it does make sense that the younger a person is, the more likely they are to need support (or at least the types of social support available in my area). I certainly feel that I would have benefited from some of those options had they been available back then.
Thanks to everyone else too! It's reassuring to hear that my experience of being dropped into a void after diagnosis isn't unique and, more importantly, that you've all found ways around the inadequate system we've found ourselves in - I'll certainly be taking all of these suggestions on board and will look into PIP too if it could help me to access some of your suggestions.
I can normally be quite proactive about dealing with and organising practical matters but I've been hesitant in all of my enquiries so far I think because it still feels so strange saying "I have Asperger's". It's still so new, like getting used to being called 'Mum' except everyone believed I was a Mum and no-one seems to believe me at first when I say "I have Asperger's".
I've just read the paper at the link you posted above and some results are starting to come in from this study:
https://www.ncbi.nlm.gov/pmc/articles/PMC4019010
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.
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:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1513329/
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.
It does help, thank you!
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.
Unfortunately the route to obtaining that information is calling the various advice lines to explain what I'm looking for and why - it's getting easier with practice though and I suppose I could see all of these calls as practice runs for how to open the conversations with people face-to-face at some point in the future.
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?
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)?
Endymion said:Thank you Deepthought I will definitely try the AV site in addition to this one, the more information the better!
Remember to take things slowly with the information, and keep it well in line with the practical application stuff, if you are not already so doing, of course.
Endymion said:I suppose it does make sense that the younger a person is, the more likely they are to need support (or at least the types of social support available in my area). I certainly feel that I would have benefited from some of those options had they been available back then.
I so know what you mean. The world is so much a better place for it, and I am glad to have gone through a period of history that is becoming ever more a distant history. I know more improvements need so much to be made, but made they are being.
Endymion said:I can normally be quite proactive about dealing with and organising practical matters but I've been hesitant in all of my enquiries so far I think because it still feels so strange saying "I have Asperger's". It's still so new, like getting used to being called 'Mum' except everyone believed I was a Mum and no-one seems to believe me at first when I say "I have Asperger's".
Make sure you get comfortable with thinking and saying, "I have Asperger's (syndrome)" before you get going with things that involve using it as a statement. For if you do not identify with it and own it ~ others can have trouble identifying with it too, and some won't or even can't ~ what with all that habits of a lifetime and all that state of affairs.
You and others as such will be to lesser or greater extents more Receptive to, Protective of or Projective about you saying and meaning, "I have Asperger's (Syndrome)".
Obviously communicating with autistic people will involve more Receptive interactions involving understanding, and comprehension. With people in general comes more the Protective responses ~ involving the tender loving care variety, all the way along to the 'run away it might be catching' variety. And of course ~ Projective interactions; as involves people imagining you as you are not, or that you are not like someone else who is.
If that helps any?