Getting a little fed up with 'autism awareness'

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fleurdelily
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03 Apr 2012, 8:34 pm

OP, you make very good points, and I agree with you whole heartedly. I am 45, and the only books I find for adults are about how hard it is to be married to someone on the spectrum.
There is a boatload of books about children, and what you point out about the long suffering family - I always shake my head and wonder, you know, that the parents are highly likely to have traits of their own, so raising any child would have been 'more challenging' from that standpoint alone, -- the books seem to assume you have a perfectly NT parent who just was unlucky enough to get landed with a spectrum child. Poor saints that they are, they have to carry on somehow, and read books to cope with it all.

(not saying it wouldn't be a challenge, but seriously, that is ALL the books seem to come from this angle.)

now that I'm an adult, should I offer some formal apology to the people who raised me, for how "difficult" I surely must have been? and was I so much more difficult than any other child they would have raised? you know, some days I just need ANOTHER reason to feel crappy about myself, and the fact that I exist.
{read that last line with sarcasm....}


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03 Apr 2012, 8:37 pm

Sporthorses wrote:
Don't get me wrong supportive parents are great


Part of the problem is that a lot of parents are NOT supportive. Mine present themselves as kind and loving people who work very hard to care for a mentally sick child, and society allows them to do this. And that same society refuses to hear our side of the story.

The "awareness" thing annoys me, too. Not just "Autism awareness," but also awareness for cancer, obesity, pool safety and drowning, etc. Sort of like, don't we already know about these things? It drowns out the lesser known problems in society, not to mention the case to actually do something about the things they try to "raise awareness" for!


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03 Apr 2012, 8:41 pm

fleurdelily wrote:
the only books I find for adults are about how hard it is to be married to someone on the spectrum.


WHAT THE...?


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03 Apr 2012, 8:59 pm

I hear ya, man. I hear ya. Not every autistic is a burden on the family, incapable of living productive, independant lives.. It seems that most of what you hear on the radio, on TV, on the internet etc. is about how hard it is for the parents of autistic children. How parents and organizations like Autism Speaks want you to know the "warning signs". What kind of irks me is the tone of voice most PSA announcers use. That sad, I'm-sorry-for-your-loss kind of voice. The worst PSA I've heard in a good while (done by Autism Speaks) starts with a kid telling his dad everything he wants to be when he grows up. The kid's voice fades out, replaced by a woman stating the odds of the kid being a pro athlete. She goes to say, "sound far-fetched? Maybe. But the likelihood of a child being diagnosed with autism is 1 in 110. 1 in 110 *in a low sorry-for-your-loss voice*. Learn the warning signs of autism. Go to [Autism Speaks website]. Brought to you by Autism Speaks and the Ad Council".



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03 Apr 2012, 9:00 pm

fleurdelily wrote:
the only books I find for adults are about how hard it is to be married to someone on the spectrum.


Try Autism and Asperger Syndrome. It's a tough read because it's written for professionals, and it's not cheap, but it is informative as hell. I haven't even read the whole thing and I still learned more from it than anything else I've read.


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miss-understood
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03 Apr 2012, 10:59 pm

Loving the hate threads! Way to spread the love and acceptance people. :roll:
Sorry, have to clarify... that is not me feeling sorry for myself.



fleurdelily
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04 Apr 2012, 12:17 am

MrXxx wrote:
fleurdelily wrote:
the only books I find for adults are about how hard it is to be married to someone on the spectrum.


Try Autism and Asperger Syndrome. It's a tough read because it's written for professionals, and it's not cheap, but it is informative as hell. I haven't even read the whole thing and I still learned more from it than anything else I've read.


this one here ... :arrow: {Amazon} Autism and Asperger Syndrome by Uta Frith yeah, $47.66 +/- Kinda pricey, but you recommend it... let's see, it was written in 1991, but she has something less expensive and newer out too (2003) but not as well rated.... I shall investigate her writing further, thank you for the reference. Might be more useful to go more with the scholarly stuff and less with the 'pop psychology' stuff.


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04 Apr 2012, 12:25 am

I refuse to watch TV in April, because I know I'll see one of those one-sided Autism Speaks ads. They're like the Nazis of the 30s and 40s. They want to wipe us out. We wouldn't be dealing with this if the Holocaust didn't happen and Rain Man wasn't even filmed.


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04 Apr 2012, 1:12 am

I dunno I kind of blush at the mention of it. :oops:


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04 Apr 2012, 1:44 am

To be honest i couldn't care less about autism awareness, i mean everyone is different so they shouldn't treat autism like some kind stereotype supermarket product, we're not mass produced like some people seem to think :o Oh by the i wanted to comment on the second post of this thread, its not just parents with kids who have autism, a lot of parents who see their kids as ''damaged'' drown in self pity, my mom used to go to these parent evenings at my therapy group, and she just stopped going, she wanted to share experiences and gain some wisedom out of it, but she told me almost all those parents just kept complaining and crying about how hard it is to be a parent of a ''damaged'' child, i'm so glad my mom isn't like that xD I mean sure parents also need support but they also need to suck it up, self pity gets you nowhere :/

Anyway sorry for the long post, and sorry if i just offended someone.



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04 Apr 2012, 4:19 am

miss-understood wrote:
Loving the hate threads! Way to spread the love and acceptance people. :roll:
Sorry, have to clarify... that is not me feeling sorry for myself.


Sorry I don't spend that much time here so not familiar with how often these threads crop up, it has just been getting me a bit down.

Thanks for the reference too MrXxx I might look that one up.



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01 Dec 2012, 9:33 pm

I stumbled upon this post and actually smiled. You guys are awesome! I have a 3 year old daughter on the spectrum and I hate all of the "poor me" parents. I am completely unable to attend any support groups. It's not about me!
I have always worried and probably always will that we don't treat our daughter "special" enough. We treat her just as we do our other three daughters that aren't on the spectrum. It has given me great hope to read your posts! Perhaps she doesn't want to be treated "special".
I just want to say thank you for possibly giving me a glimpse into what her thoughts may be.



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01 Dec 2012, 10:34 pm

Sporthorses wrote:
Hi I am having a little bit of a whinge here so please feel free to ignore :)

All this autism awareness stuff is starting to get to me because everything I see about it it's all about how hard it is on parents, carers etc. It's all about struggles and battles and meltdowns. It's about getting support and help for parents and how they do such a great job in such a difficult situation. Don't get me wrong supportive parents are great but where is the respect for us as people? Hearing all this stuff about how hard it is for parents of these kids makes me so bloody cranky I mean how am I supposed to feel any kind of self worth or get any respect from society if I'm continually portrayed as having been such a terrible burden on my family? How am I supposed to gain respect as an adult if none of the literature or media even acknowledge my existence? It's all about the children and their poor struggling parents.

I realize the whole autistic pride thing is several years old and I'm a bit behind the times but it has been irritating me somewhat lately that I can find virtually nothing in terms of support or understanding for autistic adults, and certainly no acceptance. If you look and behave normally enough in public you are dismissed as being so mild as to be almost making it up, because there is just no support or awareness that autistic kids become autistic adults.


I totally agree!



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01 Dec 2012, 11:42 pm

Sporthorses wrote:
Hi I am having a little bit of a whinge here so please feel free to ignore :)

All this autism awareness stuff is starting to get to me because everything I see about it it's all about how hard it is on parents, carers etc. It's all about struggles and battles and meltdowns. It's about getting support and help for parents and how they do such a great job in such a difficult situation. Don't get me wrong supportive parents are great but where is the respect for us as people? Hearing all this stuff about how hard it is for parents of these kids makes me so bloody cranky I mean how am I supposed to feel any kind of self worth or get any respect from society if I'm continually portrayed as having been such a terrible burden on my family? How am I supposed to gain respect as an adult if none of the literature or media even acknowledge my existence? It's all about the children and their poor struggling parents.

I realize the whole autistic pride thing is several years old and I'm a bit behind the times but it has been irritating me somewhat lately that I can find virtually nothing in terms of support or understanding for autistic adults, and certainly no acceptance. If you look and behave normally enough in public you are dismissed as being so mild as to be almost making it up, because there is just no support or awareness that autistic kids become autistic adults.


Autism Speaks in combination with the newscasters attributing every unbelievable mass shooting to Autism or Aspergers, rank high in the reasons why I plan to stay as far under the radar as I can until I'm safely retired.

No awareness of Autism would be better than what is being shown to the masses by the above two forces.

It will take spectrumite adults organizing and claiming our own message loud and clear down "mainstreet" to correct this situation.


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02 Dec 2012, 4:09 am

psychegots wrote:
I agree with you!

I've been watching a lot of parenthood recently and that really shows how it usually is, I suspect. Some examples: Max (the kid with Asperger's in the show) is not interested in listening to his dad talking about his job, the dad is all "oh poor me my son has no interest in me cry cry". Max is not invited to a birthday because some girl does not like him, he does not care but his mom is all "My son is not popular cry cry I have to fix this oh poor me". The kid is not difficult to deal with at all, THEY make it difficult and then they cry about how hard it is for them having this "damaged" kid.


It's not a good idea assume that television represents real life. I can tell you as a parent that the biggest worries and concerns that I have every minute of every day is whether my son will be content in life - whether the life he lives will be enjoyable and satisfactory to him or whether he will have it as hard as everyone says he will.


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Kiro85
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02 Dec 2012, 8:10 am

I do feel like a burden sometimes but I don't want the rest of the world to see me that way, too.


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