World Autism Day

[supernova]

Blue is the colour and certain landmarks in different countries will be highlighted after dark.

 

[King_Oni]

Paleis Soestdijk, The Netherlands

 

[epath13]

 

[Kuribo]

Wow. Landmarks and buildings being lit up blue! Autism Speaks is finally starting to get it! We don't need support, better media portrayal, some proper advocacy, better employment opportunities, acceptance by society, oh no, what we really need is ... BLUE BUILDINGS. Sure.

 

[King_Oni]

I can sympathize somewhat with your statement Icarus. There's more pressing matters than lighting up buildings (and probably the bill to light them up would be spent on support would be better). However; I feel that it at least is something symbolic just like say... the pink ribbon for breast cancer. If anything; lighting up buildings shows we're not completly written of as a (substantial) part of society. And it might have the occaisional inquiry "why is this building lit up blue?" since those are the dare I say enormous things you have to do nowadays for people to even pay attention to something.

As for what summary of what we need; yes... I agree. But clearly that ain't happening anytime soon. So perhaps we should just be happy with what "they" do for us and figure it out ourselves for the time being. I'm not saying this is all fine and dandy and we'll keep doing this for the next 50 years. Autism in general is getting more media attention, recognition by services and in some places probably decent employment opportunities. I do see some improvement, it's still not were we need to be and perhaps it wont in our lifetime even. For what it's worth we might just as well be a lost generation of people with autism because there wasn't a lot of understanding and support. Or at least, not sufficient.

 

[epath13]

I agree with King_Oni.
The only thing I'd like to add is: we can't always expect other people stand up for us, solve our problems, we have to be a part of a solution. I know for many of us it's not easy to advocate for ourselves and other people on Autism spectrum, but, I believe we absolutely must do our best.

 

[King_Oni]

I agree with King_Oni.
The only thing I'd like to add is: we can't always expect other people stand up for us, solve our problems, we have to be a part of a solution. I know for many of us it's not easy to advocate for ourselves and other people on Autism spectrum, but, I believe we absolutely must do our best.

Though I must add, I have my experiences that no matter how well I try to give my side of the story, some people just don't care to listen (and I'm talking about people that actually should care cause it's their job). As such I do sometimes wonder "why is it that we have to do everything?". Just based on history of minority groups that weren't listened to (or at least weren't seen as a valid problem/threat) and had to take care of it all themselves, I'm surprised it hasn't gone terribly wrong and people were made to listen by means of violence (or worse). And most weren't because of a disability of sorts, but just because of other beliefs (by which I'm not referring to religion specifically). Or just look at random people that go crazy because they didn't get services they needed, since I"m quite sure not everyone who ended up doing something violent, did in fact think this was step 1. It was a last resort to make people listen. I'm not saying it's a good thing... but that's the result.

But perhaps the introvertness of most people on the spectrum is a way how it keeps itself in check and doesn't escalate.

And actually, looking at numbers of people on the spectrum that have some kind of shortcoming that is "essential" for society, those numbers speak for itself. Just here in The Netherlands (since I don't have numbers for the US); 1 in 100 has autism, that's on our population of just under 17 million, about 170.000 people on the spectrum. Out of those, roughly 80% is unemployed and about half of those receive disability income, the others are on social security. In a rough breakdown, it comes down to

~170.000 on spectrum
~34.000 employed
~136.000 unemployed
~68.000 on disability income and that same amount is on social security.

Obviously, you can take children in account, but since you're legally allowed to work from age 15 here I think it evens itself out somewhat. Some don't have a job while in school, and some aren't part of the jobmarket since they're underage. And if you look at those 34.000... the few people on the spectrum I know and have jobs have savant-like skills in 1 field. Gets more interesting if there wasn't any interest in their skills (say; a computer programmer in the time before computers. Since programming requires as specific mindset, much like some other professions. It's a matter of supply and demand, even for savant skills)

Headlines have already stated autism is an "epidemic". But clearly, any other epidemic gets money spent on it and fixed/supported. And that's clearly not the case for autism.

So I really wonder... people aren't doing their best or is it that there needs to be more support from the other side? If my contact at social services doesn't know what autism is (even if it's supposedly a big problem or, as stated earlier, an "epidemic"), because the government doesn't see use to educated people in that field by means of a small informational course, I think that's plenty of cause for alarm in terms "why can't people listen to us". Even with my diagnosis on paper I come across as making up psychological disorders to them.

 

[epath13]

King_Oni, absolutely!
One thing that I've been noticing is how the general population are being influence and by whom. I'm not sure about the Netherlands. I remember my husband talking about all the ridiculous rules that prevent you from living normal live or getting employed, there have probably been some changes since 2004 but I remember leaving the country because it has seemed almost impossible to get a job or a place to live there even for a person without disability. But if we talk about the US and who has the major influence on people perception of Autism? It is Autism Speaks. And how did they get where they are at? The founder is a person with money and connections, enough said. And now their virus is everywhere. And even though I do understand the organization does a lot of good... just like catholic church does a lot of good. It's a perfect example how people are influenced: you tap into their emotions, you give them satisfaction, you make it look like there's almost nothing else out there but what you offer and here we go, you've got them on your hook. I obviously don't think "getting people on a hook" was the intention. But there's an expression, the worst things can be done with best intentions... or something like that... well...if I calm down a little bit, I can see things like that as natural parts of life, I guess. Now... what can we do? Sometimes I have a vision what I personally can do without starting a war, but my issue is: difficulty with organizing my thought and actions. And that frustrates the hell out of me. I'm standing there looking at things falling apart (like, for instance at my son't school or with Autism training strategies) and I'm feeling paralyzed even though theoretically I know what needs to be done. I tend to come to a conclusion there has to be one person or a group of people, free, non-biased people who show the way, who give clear directions to the rest. I think, then, more quiet thinkers and periodic warriors (the ones who stand up sometimes but with no results) will know what to do and do it. I wish I was a little less confused and disorganized, I'm so sick of hearing all the nonsense and seeing hopelessness. I've been thinking, in order to get though to people, to help them understand a little more and maybe help creative minds to come up with new solutions (like teacher at school or employers dealing with people with Autism) information needs to be simplified: what is Autism, how to deal with it, what strategies can be used, but in a simple and concise form. I'm kind of talking "out loud" here but that has been a goal behind the autism website I'm building. I'm concerned that I can not do it alone, I need to collaborate with others and I'm terrible at working with others but only together we succeed. I need to think a little more about it...

 

[supernova]

It's a fact that we need to face that many people - including doctors, social workers and other professionals - don't really 'believe in' high-functioning autism or Asperger's. This is maybe to a certain extent understandable because the difference between people at either end of the spectrum is so very marked. Also, we suffer from the fact that the concentration of the support and money available (certainly in the UK) goes towards children and there is hostility towards any suggestion that some of it should be divered to the care of adults.
The irony is that the better we cope the more likely our problems and concerns will be ignored.

There's a saying that all publicity is good publicity and drawing attention to the condition by the blue light on prominent buildings has certainly got people talking in the media and that has to be a good thing - surely?

 

[Spinning Compass]

But not if they are talking about the wrong thing. Here in Michigan a private group paid to have the Mackinac Bridge lit up blue for autism and there was an article on the news about some of the new state-sponsored autism programs. The VERY FIRST comment was from a person who quoted the article about the new programs and then added "but who will pay for it? Taxpayers!"

I think we need to be aware that there is a growing resentment towards people with special needs precisely because they do have special needs. I don't know where it will all end, but we ignore it at our own peril. And until we can address that issue all the blue buildings in the world won't do a bit of good.

 

[supernova]

But not if they are talking about the wrong thing. Here in Michigan a private group paid to have the Mackinac Bridge lit up blue for autism and there was an article on the news about some of the new state-sponsored autism programs. The VERY FIRST comment was from a person who quoted the article about the new programs and then added "but who will pay for it? Taxpayers!"

I think we need to be aware that there is a growing resentment towards people with special needs precisely because they do have special needs. I don't know where it will all end, but we ignore it at our own peril. And until we can address that issue all the blue buildings in the world won't do a bit of good.

All through history people with 'special needs' have needed the support of the 'abled' to live but in previous centuries this support has come from families and friends and charitable institutions. When the state takes over it too often leads to a sense of entitlement and more and more claims for 'benefits, which, in turn, leads to resentment from those whose taxes are paying for these benefits. An additional problem is that (at least, this is the case in the UK,) there is a refusal to accept that the money for benefits comes from all taxpayers; it's seen, instead, as government money. Ask where the government gets it from you'll be told (a) rich people, (b) money paid in by the parents of the recipients or (c) "it's a sum put aside by the government for every citizen to ask for it they need it" - a kind of pot of gold apparently.

 

[King_Oni]

That's an interesting statement (and I do agree with it) in how it changed and now the government supports the special needs people rather than family.

A thing, at least here in The Netherlands is, that basically everyone is entitled to certain things, that's a law. But slowly, a law like that cannot be sustained... it took a few centuries to figure out how it snowballs into something out of control. And clearly, relying on family support snowballs as well, since I barely know any families that can support their children, especially with all kinds of mandatory rules, like for instance (at least over here) mandatory healthcare which has to be paid for.