Has autism been a useful label for you?

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The autism label was helpful for my parents because of funding, but it wasn't useful for me. I got treated like I was younger all the time. I was also held back a grade for "emotional reasons". That was horrible for me.

The work was way too easy for me and most teachers refused to give me work that was my level. I got fed up with school and eventually fell behind. I got put in special ed and I barely learned anything.

This made me extremely depressed and it made my entire life go downhill. I dropped out of school when I was fifteen because I couldn't handle being behind in school and having no friends.

After a while I started to question the validity of my diagnosis. A lot of doctors including psychiatrists and counselors doubt my diagnosis as well. I also learned that my parents exaggerated my symptoms and I never received a full diagnosis. No one knew what the hell was wrong with me, so they just labelled me with autism.

Even if my diagnosis is correct, I don't think it's actually useful. Most people that understood me and actually helped me would have been the same whether they knew about my label or not.

For the last year I've been experimenting with not telling people about my label and it's been working well for me. I recently started learning to play accordion and I didn't tell my accordion teacher about my label. Lessons have been going well. I've been progressing quite quickly with her. I probably wouldn't have progressed this quickly if she knew about my label. I've been thinking of trying this out at school.

If I can get diagnosed now as an adult and perhaps get approved for disability based on that it will be very useful for me. My doctor doesn't seem to think I'd be approved for disability for my POTS (not diagnosed yet) but if I can find the right psychologist who diagnoses ASD in adults I think I'd have better chances of getting disability for that. I can't handle the customer service working world anymore

As for economically I am in vocational rehab so the future will tell.

The autism label helps explain why I am the way I am. The more limited Aspergers label was somewhat closer to explaning these things then the more broad Autism label. But now that the Aspergers label has been unfairly tarnished and slandered and is associated with fakery, excuse making and ableism it dosen't explain anything about me.

Has not been useful to me. People either don't believe I have it because they've talked to me for a whole ten seconds, don't know enough about it to form an opinion or have heard enough of the negative stereotypes that they shun me.

I have only had disclosure backfire on me. I just recently had to quit my job because I told too many people. Kind of glad I don't have a good career, since I have to change jobs often.

Thanks for the post, would love to read other people finding support and positive experiences in contrast to my negative experiences.

I rarely think of myself in terms of my autism. I'm not denying it to myself, it just isn't something I think about a lot. To be fair, I'd probably be considered very mild on the spectrum.

Trouble is, when you say 'Autism' to the average person they think of a LFA person who might as well be ret*d as far as you can tell. This isn't going to change anytime soon which is why Asperger's is a more useful label, since there's enough media exposure to explain it. Though I really hate comparing myself to Sheldon from BBT.

Why? I love comparing myself to him. Sometimes I think he's my hero He's so pedantic
Although in a couple of aspects I consider myself 'worse' than he is - and that's that I stim and he doesn't (or at least I've never recognized something he's doing as stimming, correct me if I'm wrong)
And also that he makes very good eye contact with people, even people he doesn't know. I'm not good at this, even with people I do know.

Sheldon is not someone whom I would want to be friends with.

He wouldn't be too bad, though, in a foxhole during wartime.

It has been a helpful label for me because of the fact that I received accommodations because of it and teachers were more understanding of issues I was having (or tried to be..)

In my honest opinion Sheldon is by far the most sympathetic character in BBT. I am lousy at math and science so I can't relate to that part of him, nor do I have his problem getting sarcasm; but I find myself agreeing with just about everything he thinks about interactions and social norms. I also relate to his asexuality and a less extreme fear of germs.

This brings up a related issue that I've been trying to decide on now that I have a Dx and want to start disclosing, at least to some close family and friends. Since the change in the DSM-5, I'm not actually Dx'd with Asperger's. However, for most of the people I know, it's probably the term that they most closely associate with where I am on the spectrum. If I tell people I'm autistic, or have ASD, it's likely to be a much longer conversation, with a lot of explaining about the nuances of what the spectrum is and how that works, and trying to overturn some of their mistaken stereotypes and prejudices. I also worry about a bit of an anchoring effect if I start out with "I'm autistic", where they immediately reject it because of their stereotypes and the entire conversation then becomes framed around that initial reaction.

I expect I'll still have to do some of that if I told them I have Asperger's, but I expect it would take less, at least to getting them to a point where they understand how it affects me. It just wouldn't necessarily be true, in the strictest sense. I'm thinking that I'll probably say something along the lines of "I have ASD, a few years ago it would have been classified as AS, but it's been recently changed", but I think that just puts me back at explaining the entire concept of the spectrum and where and how the different diagnoses fall on it.

Last edited by gamerdad on 03 Sep 2014, 10:03 am, edited 1 time in total.

I'd be really leery about telling people you have an autism spectrum disorder. I would only tell those I trust implicitly.

Most people don't really understand what it means, and I have a hard time explaining it fully. So mostly I don't tell anyone at work unless we are friends. Once in a while I will tell a manager if it seems appropriate to the situation. I wish I had had a diagnosis in grade school, I needed special consideration then, but I didn't figure it out myself until I was in my 30s.

I agree. There is no way to know if or how governments, corporations, association, churches, friends and some family members will react or change their reactions to an individual's autism in the future.

As in you would use a potentially less loaded or stigmatized term? Or as in you wouldn't disclose anything at all?

Autism helps me get money from the government. Living at home with my parents allows me to save up that money, so that I can invest it in my future and that of my family. In a way you can say, yes, autism has actually been useful to me! I am a bit of a late bloomer with independence, moving out, having and holding a job... at least I have a girlfriend and I have some money to do fun things every once in a while. I get to travel places and save enough for later.

I can't say I like autism a lot, but it has given me certain benefits I am definitely happy for having. I am grateful for the help I've been given. I count my blessings and although my situation is far from ideal, I'm making it work!

It didn't do anything for me. I have tried telling a couple of people that I have autism but all it does is bring negative stigma and stereotypes upon myself. Therapy was still a waste of money to me ( all they could do was offer anti-depressants ) and the government doesn't grant me anything because I do not complain and over-exaggerate constantly, if you aren't vocal and noisy you do not get anything from our government. When I asked for a grant because I had autism and frequent depressions they told me that the government fund was only for people with severe disabilities. They were being downright rude and thought my disability was a joke, despite it impacting my life very heavily. If you are autistic and introverted you are just completely invisible. Teachers, counsellors and family somehow think that good grades mean you are happy and doing well. A label is not going to change the mentality of people, most will still completely ignore your existence as if people with autism do not need social interaction, companionship, love and care. I would like to feel human too!

In the end all it did was confirm what my parents were afraid of and that was that my thought process was radically different from normal people. On one side I can easily understand complex theory and am extremely caring for my loved ones ( especially my pets, I absolutely love them ! ) but at another side I simply cannot understand how other people socially interact and I am just too naïve for my own good. I have had multiple instances where people simply wanted to become friends with me only to abuse me by trying to convince me to do their homework or give them money. The worst case was when a girl was seemingly genuinely interested in me for the first time in my life, three weeks later I got the courage to ask her on a date and she said yes. I couldn't be happier and thought my life was finally taking a turn for the better. The day before the date she called off just like that and the next day she and a clique just laughed at me. Then I was completely ignored again, even when I said hi. It crushed me and made me lose an entire year of university due to depression. It is so frustrating that people can legally do this, it hurts so much more than getting punched in the face.

A label is not going to change how people are. Even without the label people can instantly sense you are different. Most will simply ignore you because they unconsciously stay away from people who are 'less apt' than them, more or less a natural instinct I guess. Then there are some people who see your condition as a weakness to exploit for their own personal gain or fun, they are mostly people with deep rooted narcissism who are rewarded in their social circles of other narcissists for their rude and abusive behaviour. Thankfully that leaves us with a small portion of people that really do care because without them the world would be pretty grim for us.