Autism Speaks - is it good or is it bad?

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The impression i get of Autism Speaks is that they are trying to promote awareness of Autism Spectrum Disorders.
They are always trying to sell jewelry or other things with the Autism ribbon or puzzle piece i guess to increase awareness.
I've always thought they were more geared towards educating families or friends of people with Autism, so it's a completely different site than this.

Here we engage in conversations with eachother, most of us are on the spectrum somewhere already, and i am not sure if Autism Speaks has a forum.

However i think it's a good site for parents who need info desperately.

The Autism Speaks thing is confusing. It's a large spectrum. I acknowledge that I am on the lighter ("higher") side of the spectrum as are most of the people with diags posting on this forum. I agree with many of the criticisms of Autism Speaks - BUT part of me is honestly concerned about those that do not have such a high level of functionality. For those lower on the functionality scale I can see how they may desire a cure or, at least, something to alleviate the worst symptoms. I appreciate it if Autism Speaks were clearer on what their particular goals are.

That said: I would never want to change who I am. The thought of being an instant social butterfly makes my stomach turn. It's a lie.

<tangent> This is part of the problem with the DSM-V tossing all in the same range. There are real and clear differences. These labels can be annoying but they offer distinctions that are helpful. </tangent>

'Anyway.

From the people who are severely affected, the general attitude seems to run along the same lines as for the people who have milder symptoms. Most are happy; some are not; some want a cure and some do not. I think we need to let them speak for themselves instead of assuming that because they're more impaired they must want a cure. After all, NTs can assume the same thing about us, because we're more impaired than they are.

Exactly.

There ARE differences. However, the current labels are still not useful at all.

I think Asperger's should not exist but that "HFA" should have between 5 and 7 subtypes.

A person's ability to overcome the worst symptoms of Asperger's likely has as much to do with neurology (mild to begin with, or "bloomer") and circumstances that occur before one is 18 (supportive home environment, school or peer group conducive to helping one adapt, or early interventions and therapies as a child and teen). Also, appearance. Those of us with decent looks tend to get more help and support than those who look ugly, creepy, or hideous. This is especially true for women, but it is true for men as well.

Thus, blaming people for being low-functioning in some areas while feeling superior about oneself for being high-functioning in those areas is probably misguided.

That said, it's possible to change one's habits and behaviors, but it likely takes at least some professional help to do so effectively, so you don't burn out like Sweetleaf and Callista said. I work with an acting teacher.

Definitely misguided.

I don't think that changing one's habits and behaviors would necessarily mitigate burnout because what causes it is not specifically how you act and behave (although trying to behave more "neurotypically" adds a lot of stress and makes burnout worse), but needing to function reliably on a routine basis in a stressful environment. The vast majority of work environments are stressful in this way, as are school environments.

I don't think there's really a way to learn how to not burnout any more than there's a way to learn how to fly. It is possible to receive accommodations that make burnout less likely, but getting a job where such accommodations are provided strikes me as difficult to impossible.

I have multiple burnouts over the past 20 years due to school and working - including working from home. Going over every one of those, I just do not know how to get around it. I wish I did. I've talked it over with my therapist and in the last session she said she has no idea how to help with these things.



I've worked hard and efficiently, and I've tried to push through over and over again. I've burned out many times, lost skills, lost abilities, and developed more than my share of mental illness as a consequence of trying to do this. I am smart enough to understand the work, I am capable of doing work (either on a job or in a university) and doing it well. I tend to be quite good at whatever I set myself to doing. But every time I do it, I end up burning out, and the burn out makes everything harder, and leaves me close to nonfunctional for months up to a couple of years. I've been going through this cycle for close to 26 years now - my entire adult life. I was going through it in school before that. Stress instability seems to be a common thing among many autistic people, and that leads to shutdowns, meltdowns, burnouts, and mental illness.

If I could work as hard as anyone else, I wouldn't be trying to get SSI. Believe me, seeking SSI is much less rewarding than having an actual job and making actual money that I can use to support myself like anyone else. I hate being in this position, but I think that people who have been in the same exact position as I am in and were able to push through because they worked hard and efficiently, then they were not in the same exact position I am in because their neurology does not make them excessively vulnerable to stress and overload.

Nothing shameful about seeking help. While I'm the main source of my improvement, I could never do it alone, and I'm thankful for everyone I ever met honestly.

But now you are adding more excuses. Now, it's about looks, and if that suddenly becomes an irrelevant factor, you will find another way to move the goalpost.

If you noted, I included myself as someone with most of those advantages, which means I am not making excuses for my own behavior. Rather, I am stating very reasonable hypotheses which are based heavily on both empirical data and personal observations/experiences. My advantages have led to the fact that: I'm a high-achiever with stellar academic credentials and professional bearing who has managed to get on an excellent career path with top employment already lined up when I graduate grad school. People also naturally like me when they first meet me, so I don't have first-impression trouble like most aspies.

I have disadvantages, too, which have caused other aspects of my life to be an absolute disaster: STD's, family trouble, $15,000 which just disappeared in gambling, no close friends, and no girl can stand to stay with me for more than a few months (and, with most people, it's a good first impression and downhill from there once they learn I'm a f****d up person). I'd say I, like many others, have a mix of strengths and weaknesses that are largely built-in. You cannot judge me for my weaknesses, and I cannot judge you for yours.

Your advantages and disadvantages are likely built in. The basic contours your life will take is largely determined by factors outside of your control. But, within those limitations, I believe you can choose to guide it in positive or negative directions, which I'm trying to do.

If you have supreme self-awareness, you can make many positive changes on your own. Sadly, part of the curse of Asperger's is having naturally poor self-awareness. Even so-called friends are often not very helpful. Even if they try, they are not good at verbalizing and describing things, or they may see you in a more positive light than others do. Thus, the first step is to develop self-awareness. Then, see if some things can change, or if you can find work-arounds, while realizing that most traits can be guided, but not eliminated.

However, part of overcoming Asperger's is being able to see things from another person's perspective, developing a "theory of mind." This is something that you, minervx, apparently cannot yet do, as demonstrated by the fact that you hold others responsible for having more severe Asperger's symptoms than you do, as if they are just like you with all your natural strengths, advantages, and capabilities. I'm sure, from your attitude, that you are probably very good-looking, so people probably treat you nice from the get-go and are more willing to help you. Particularly for women, the entire trajectory of their lives can be determined by something as simple as looks; the autism factor is dwarfed by the looks factor for women because of society's attitudes. The same is true, to a lesser extent (though much greater than people realize), for men.

Also, growing out of many of your autistic traits was probably a genetically-determined part of your developmental trajectory. You probably can't take credit for 90% of your improvement.

Last edited by Tyri0n on 05 Apr 2013, 9:00 pm, edited 1 time in total.

I read everything as open-minded as I can, but if I don't agree with it, it's not necessarily because I'm intolerant. I simply believe that there are a lot of barriers and self-limiting beliefs that people can break through.

Self awareness as well as the awareness of others is something that I've always worked on, even to the point where I've been too concerned with what people think at times. Yeah, I'm far from perfect. But I'm good socially, not amazing, but pretty good, and I'm happy about that.

I'm well aware that here, me speaking my free honest opinions is something that will make a lot of people here disinterested in what I have to say, but in the long run, I know there are people who will be able to relate and appreciate it. So, it's a risk I'm willfully taking.

So, I didn't mean to insult any of you or say that I'm in any way superior to any of you. I've just seen so much improvement in myself, and I see it possible for anyone, but I can't guarentee everyone. And when people suggest that overcoming autism isn't possible (granted, it's not an expectation) or desirable, I feel that's way too strong of a generalization. I know plenty of Aspies who have improved socially who have taken the same approach to things that I have, so I remain optimistic.

Last edited by minervx on 05 Apr 2013, 9:02 pm, edited 1 time in total.

So what approach did you take? Can you be sure your developmental trajectory wasn't pre-determined to show positive improvement in your late teens and early 20's? Did you have rich parents?

Well, I did receive early intervention. And I do believe that a good portion of the development is genetic. My parents were middle class. I've been to therapists and doctors. But the main thing that helped me was that when I was around 17 or so was sitting down and thinking about my philosophy I have toward people and socializing.

I instilled in myself (because my parents were out busy working) some principles that helped me:
1. seeing things as objectively as possible. detaching peoples actions from their feelings at times.
2. seeing a conflict between two people as neither person being a sinner or saint
3. being able to accept that i'm wrong, instead of blaming a person who i feel has hurt me
4. finding role models who have what i want, and spending time with them. even if i spent 3 minutes with
someone who i admired, i would see what was special about them and tried to learn how to adopt those qualities.

a lot of other principles too, but those are some of the more important ones.

if you were to see me in person, i wouldn't be super charismatic or look or act so much better than anyone else. i'd be an average guy who would blend in with the crowd. and that's all i ever wanted.

I've been doing all those things, too, but I don't get social skills out of it--just a lack of social anxiety. In fact, I'm quite clumsy socially, but I live happily despite that. Sometimes it's even a source of amusement to me, with some of the downright silly things I end up doing. I don't see why I can't just be myself, communicate on my own terms, and work on contributing my strengths instead of desperately trying to shore up my weaknesses.

I definitely have all those traits, except #4, which is much weaker than the others. Not being able to look up to/admire anyone, except in limited situations (have been a wing-man for alpha males/pickup artists before and befriended them just to learn how to pick up chicks), could be some NPD-type s**t. No idea.

Anyway, you have a lot of advantages that others didn't. Many had no help as children and had no idea what was wrong with them. My parents told me I was demon possessed and that it was my fault for not letting the Holy Spirit deal with it when they took me to so-called "deliverance."

My advantages: genetics + never having to suffer bullying, luck, being forced to learn how to live independently at a young age, plenty of money as a young adult

Yours: early interventions, early diagnosis, upper middle class parents, genetics

For both of us, the main factor is likely: genetics

Thus, neither of us can take credit for our relative success in different areas. And I am not responsible for my lack of success in my areas of weakness, and neither is anyone else here.

Last edited by Tyri0n on 05 Apr 2013, 9:17 pm, edited 1 time in total.

I never had these self-limiting beliefs. I believed I could do whatever I set myself to (and for a limited time in most cases, I was correct). The problem comes in maintaining that degree of functionality without falling apart, something that has so far been impossible for me.



Your free honest opinions are something that I have not found to be universally true. Your opinions aren't really new - I've seen similar directed at disabled people many times in the past. One of the biggest errors I've come across is the tendency to assume that everyone has the same potential and same ability to function, if only they try hard enough. If what works for you does not work for me, it's not because of a moral or ethical failing, or a lack of personal responsibility, or that I am making excuses or shifting goalposts. It's because that I very probably deal with limitations that you do not.

It seems to me that most people I've encountered, no matter how much they actually work, really want to be able to work, to support themselves, to essentially be able to live independently (or as independently as anyone can live in this society). Yet, these same people are frequently told they're not trying hard enough and are making excuses when they not only cannot do these things reliably, but have experienced severe decompensation when attempting to do these things for any length of time. I know after two and a half decades of running into walls, I don't think someone else is likely to show up with the secret formula to manage what I couldn't do in all that time. In fact, the thought of continuing to run into those walls just leaves me feeling exhausted and discouraged because if the same thing happened the last dozen times I tried anything, why would the next time be any different?



I think it's way too strong of a generalization to say that numerous people were in the same place Callista is and managed to push through it, without actually accounting for Callista's current place and what she's experienced in the past.

Oh, wow. Possessed, seriously? I feel like I have to apologize for all the crazy whacked-out fundamentalists now, except they'd probably just say I was possessed too.