People giving disorders bad definitions....

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I seem to notice this a lot even here. I hope no one takes me the wrong way but while growing up, I didn't know what autism was. Once I had been diagnosed with aspergers and learned that it was under the umbrella of autism, I was upset and went through so much denial. Now I know what autism really is and have met people with it as well as people with other disorders.

Here's the thing that bothers me. I see many of these labels get abused. The loose terms and definitions of autism give somewhat of a demeaning notion those who are autistic are incapable of any value or function in life. I've developed a thick skin for this but now I'm wondering if maybe there should be more awareness about autism. I've met many people with various degrees of autism and found them to be all different with many talents as well as insight. It just seems like this site gives massive scrutiny to those who actually have autism. Maybe it's just me I don't know.

I realize there's always going to be negative stigmas attached to people with disorders or weaknesses. But do you think that the public perception of these labels goes too far?

I'm even seeing members with aspergers making nasty statements about autistics and I sort of thought this was a support site for those ranging within autism.

Just wondering how anyone else personally feels about this autistic or not?

Last edited by MissConstrue on 23 Sep 2009, 9:57 am, edited 1 time in total.

Anyway, nasty defenitions are always nasty definitions.

Whatever you talk about, mean or/and ignorant people will be so scared that they always get meaner and nastier.
It's so much easier to pick a revange on someone who won't say anything in return.
Except a good punch on the nose sometimes!
Or worse.

... On internet, it's soo easy for all those people to write what they write.
Though they wouldn't dare to say in real half of what they write on furums.

... Too dangerous for their own good - and they know it.

I'm not sure what the 'scrutiny' statement is supposed to mean.

Other than the occasional troll baiting people for an argument, I can't say I've seen much negativity toward autism here, WP seems to be just what it's supposed to be - a support group - overall, I'm quite comfortable with that.

I do agree, however, that public awareness of just what Autism is SUCKS. I don't know how long its going to take for the idea to sink in to the public consciousness that Autism is not identical to Downs' Syndrome. The only way I can see that happening is to load up the popular culture with characters that more accurately portray what its like to BE Autistic - and though I see potential authors post here occasionally asking questions for research, NON-ASPIE AUTHORS CANNOT ACCURATELY CAPTURE THE ASPIE EXPERIENCE. If you don't live inside an Autistic brain, you can't describe the way we see the world, or how that affects us. WE HAVE TO DO THAT OURSELVES. Get crackin', creative kiddies - only we can change the way they see us.

Otherwise, we're all going to be thought of in terms of RAINMAN forever. I saw an episode of Cold Case (hate it, but can't afford cable) a couple weeks ago with an Autistic adolescent character in it, who might as well have been a young Raymond Babbit. Nearly non-verbal, photo-memory savant and obsessed with fish to the exclusion of all else. ::Sigh:: This is what NT writers come away with - a few lines from the DSM and a thumbnail sketch of RAINMAN. They don't get it because they CAN'T get it. We need to be writing the stories ourselves. That's the only way they'll ever see us as we are.

I think I have an idea of what you're talking about and all I can say is it's the folly of youth.

Last edited by Hmmmn on 23 Sep 2009, 2:11 pm, edited 1 time in total.

The stupid thing is that a lot of the so-called "awareness" campaigns have the end effect of furthering the stereotype of an autistic person as empty shell or tragically disabled or even some kind of monster. A lot of the "awareness" campaigns are really nothing more than fearmongering. The only positive effect they have is making people aware that autism exists. Beyond that, we're really worse off than if they hadn't given the public the impression that autism = tragedy and "don't miss these signs or you'll lose the chance to Save Your Child via 40 hours of ABA a week!"

^ Just released video from Autism Speaks. "Autism is worse than pediatric AIDS," "autism will destroy your marriage," and many other 'winner quotes' in this one.

Props to Tahittiii for posting about this at
http://www.wrongplanet.net/postp2397500.html&highlight=#2397500

[youtube]http://www.youtube.com/watch?v=HDdcDlQVYtM[/youtube]

I have seen this happen, too. People who don't know too much about autism, end up defining it by the one or two autistics they know (vaguely). Ther eis also a need within the autistic community to assert ourselves as capable people, and some people use AS/HFA as a means of distancing themselves from "low-functioning" autistics who are allegedly incapable, and thereby end up stigmatizing those with the LFA label more. The reality is that autism is a very broad spectrum, with people with all kinds of ability levels in many areas and a few traits in common (eg. social differences).

It think, to my life anyway, It was very dangerous for my needs for people to judge me. when I needed to find a vocational program, I wanted the Office of Rehabilitation, which would have just given me an career assessment, figure out my weaknesses and strengths, and find me a career, even if I had to go to school for it.
But because Asperger's is in the Autism Spectrum Disorder category, I got put into an agency that mostly deals with autistics who have mental retardation,severe behavior issues, and other more severe forms. The only higher functioning client in there, were people 2 level lower than me, yet they were very mean toward me. I did not feel safe at all. On top of that, their programmming was so inappropriate, it was not even funny. I wanted a career assessment, but they did not provide that. Instead, the type of jobs that they would give, were jobs that they controlled and handed to me, not ones that i would want, be good in, or even paid anything.
The jobs had many problems:
1. The environments were too noisy and bothered me sensory wise.
2. did not pay or only were piece work,get paid half a penny per piece doing the same job that normal people would at least get minimum wage for.
Even worse, because of my disability, i was put into a residence, even though I had no need and was and still am more independent,especially with my medical, than even normal people. I had many years of hell having my disabilities exaggerated, so that this agency can keep their money.
This is what comes with the stigma of having Asperger's in the Autism Spectrum Disorders category.
On a somewhat related note: I was actually reading something about the new DSM V, that is coming out in May 2012, and there is talk of having Asperger's removed from the Autism Spectrum Disorder category, and be pput in its own category, or a non-verbal learning disorder category.

I can't begin to express how disgusted I am at the messages contained in this video and particularly at autism being portrayed as some kind of child stealing monster or being compared to AIDS and cancer. My son is LFA, I've never felt that negative about him or his diagnosis and would have deep concerns about anyone who does.

Good point.

On another site, I mentioned about having AS, and one guy went off on me because I was "self-diagnosed" and that I was insulting the meaning of autism for those "who really have it." He also made and issue about people who claim to have "mild" autism for similar reasons.

Okay, he has a point in that I don't "know" that I have AS as I don't have the word of an "expert" upholding that position, but he wouldn't even acknowledge that I don't have anyone within a day's journey of my location who is qualified to diagnose AS in adults; never mind finding someone who can do it who will take on more patients. That all the preliminary screening tests indicate I have AS and that the symptom list describes my life for as long as I can remember didn't seem to hold any weight with him.

His position was hurtful because it basically said, "If a doctor won't give you a diagnosis, you're using AS as an excuse for being a f**k up."

More so, he insinuated that any "autistic" who is functional and able to support themselves doesn't deserve to be identified as autistic.

These things hurt me because just because I look "normal" on the outside and can do the basics of getting along for a while in polite company and get basic employment so I can pay the bills DOES NOT mean I don't suffer from symptoms caused by autism. Yes, I am blessed to be "mild" or "highly functional" as I could have a much worse situation than life gave me, but to diminish the pain and suffering I've endured my whole life as insignificant because I don't need mommy following me around changing my diaper regularly is insulting.

I don't doubt that some jerks will use AS/autism as a way to justify their antisocial choices, but people who do have AS don't choose to do much of what they do, and until they understand that they have AS and what they can do to modify how they interact in society, they suffer from a condition they didn't ask for...often never knowing that they have a neurological condition and weren't just born natural f**k ups.

That's what I'm trying to do with the list project that I've been working on. Many seemed willing to put their 2 cents in on the first one,but aren't interested in doing anymore. The first one that I put out to the many people has already made a difference, and is going to be put on a site that directly serves those that care for people with autism. All in all it's possible that it will be read by over a thousand people, maybe more. This method will never be as popular as Autism Speaks ads, but it will reach some people. Writing books will reach some people, but NTs have a short attention span. They will spend 5 minutes watching a video on youtube, or reading a few pages. Unless it's people that are caregivers of some sort of those with autism (and sometimes not even then) they aren't going to read a book about autism.

We spend a lot of time sharing our experiences about what it's like being autistic on here, as well as being in agreement about how pissed off we are about the media's negative, and inaccurate perception of us, but what are we doing about it? Society will never know about how it really feels to be autistic unless we tell them. Discussing it amongst ourselves is great, and all, but much of what we're discussing wouldn't even be an issue if others would accept us in the first place. How are they ever going to know any different if they're never informed? There's interest in hearing our side of things, but until we actually do something about it Autism Speaks is going to be the leading source of info about ASD. Period. Complaining about them isn't going to change anything. Telling our side will.

It really upsets me when aspies on forums who go to autism schools complain about some aspies being nasty and bullying. It makes me think if we cant be nice to eachother, how is the NT world going to accept us. There are 2 women on here complaining that their aspie husbands are abusive to them, whats the answer to that? Should these men have accepted that they should be alone as they can't have a partner without being nasty to them, was it selfish of them to try a marriage as they should have known they couldnt handle it.

there were 2 threads i saw this morning, an aspie with a bullying aspie friend who takes advantage of him, another AS girl whos AS friend always makes her watch his videos and never cares what she wants to do. I dont want to sound too negative as i have lots of nice AS friends, but these ones are out there,

I think the attitude of "aspies are perfect, NTs are scum, they need to change for us" isnt always fair. I dont get on with most NTs, but it sounds like some aspies are horrible to.
Ive been treated badly by NTs though and I think we need a change in the world to stop so many aspies killing themselves. It scares me how put down we all are,

but then whats the answer to deal with these horrible aspies. A lot of the time i dont think its their fault, their just too autistic to show care for the friend.

Another Point of View

Last edited by DaWalker on 24 Sep 2009, 12:01 pm, edited 1 time in total.

The answer is simple. Not everyone should be married. It doesn't mean "no, you can never marry, you have AS".
We should take a look at the situation objectively. What if you have an NT man with anger issues who gets married and is abusive toward his partner. Would you say "NT men shouldn't marry" because of him? Or, would you say that guy needs to work on his behaviour or not be married, unless he's married to someone who doesn't mind being treated like crap.
I admit my interpersonal skills are not that great so if I were to get married, it would need to be to someone who would tolerate it because I cannot change it that easily and I am self aware enough to admit it. I am not going to lie to myself and everyone else and pretend I am great marriage material. Truth is, marriage would be a greater challenge for me.

Using NT couples an a basis, I think it is UNIVERSAL that people need to do a lot of soul-searching about marriage before getting married.

Marriage is a lot of work and personal commitment to another person...accepting their good and bad points. Everyone has baggage. Some more than others. There is nothing saying your partner can't or won't change at all after you get married, but this is why pre-marital counseling is becoming mandatory in more and more churches. It's intended to prevent divorces, but in truth, it really forces the couple to understand the commitment they are making and to honestly assess if they are getting married for the right reasons. Better to not marry than to marry for the wrong reasons.

Someone with AS could be abusive in how they treat others (intended or not). They could be "unemotional," leaving their partner feeling unloved and unappreciated. It takes a special person to choose to commit to someone who may never be able to express the love and affection they were hoping for, but this is why pre-marital counseling is such a wise practice.

What worries me is that in those cases it looks like its specifically their aspie traits that made them like that, for instance if an AS man was addicted to drugs or gambling id think "well thats just human, anyone can get that" but if its their aspie traits, like always doing their hobby instead of showing care, that worries me. It makes me think aspies will never get understanding.