I went to a support group

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I have pondered whether I am medium functioning in some of my posts. I have reached the conclusion I am very high functioning, it's other things besides autism that's holding me back, when I thought it was just autism. That's why I wonder if I would fit into support groups or just stick out like a sore thumb? I feel like I stick out in most situations involving other people.

I'd have to say I am on the lower end of functioning. I still live with my parents, don't drive, I fail at job interviews, and come off in both action and looks as weird so I probably would blend in with the meet up group. I have worked two low paying jobs for over 9 years each but depended on my dad to get me there. I stood out at every job people admitted to me they did not know what to make of me. They thought I was very crazy or some kind of fumbling genious who could not get his act together.

I remember seeing an essay somewhere, that was about a person who has (IIRC) William's Syndrome. On seeing a group of other people with the condition for the first time, she was sort of horrified. All the things that she'd felt bad about in herself (and had tried to hide) were suddenly on display right in front of her. It made her hate them, in a projected self-hate sort of way. IIRC she eventually came to see the dynamic and the bad feelings lessened. For the life of me I can't remember the title or the author of that piece. The theme of it was "disability shame."

There's an AS group in a city a ways from where I live that had a free showing of an autism-related movie last year. There was a bit of discussion afterwards. I didn't stay long, due to wanting to get out of the big-city traffic before dark, but it was a pretty normal-looking group. No stimming, or other 'obvious' odd behavior that I could see. And jobs, college, strings of significant-others, and such. I was hoping to run into some "fellow burnouts," but didn't see any 'obvious' cases. But then, I don't look 'obvious,' myself, or even know what exactly 'obvious' would look like. I have to go back sometime and, like, actually talk to people. (Can't know someone's story until you actually hear it.)

I guess I felt a bit intimidated. My current life is SSDI+SSI, living with parents, haven't worked in 10 years, and I don't have my 'impressive' cognitive skills anymore. I'm not sure how many people can understand that sort of stuff. So, I guess I was worried that I'd be the "lowest functioning" of the lot.

The Autism NZ meeting in Auckland has a core bunch of goers from all levels of function, and noobs popping in to see if its for them.

The core group changes slowly as people leave, and others begin to go all the time.

For me it was initially valuable to see others on the spectrum.

However, the value of attending all the time was minimal, as I'm lucky to get out a fair bit anyway.

I think there was part of this at work too. Outside of work I am very isolated. Having contact with others on the spectrum made everything very concrete and real and part of me recoiled. I lean towards a neuro-diversity view point, but regardless, autism can be very disabling. I was forced to acknowledge that and forced to face my own feelings about disabled people in general - feelings I didn't even know I had. And admit that I am more like them than not like them.

This is why I feel I need to go back a few times. I need to connect my intellectual assessments and ideas of autism with the reality of it. I need to strip away any remnants of the unfair stereotypes I seemed to have unknowingly picked up over the years.

I need to bring ear plugs, though.

What we find most distasteful in others are our often own worst characteristics.

It's like someone held up a mirror, and you were surprised and not too happy about what you saw.

I think it would be a good thing to keep going and process those feelings, wavefreak. Accepting it in others might be a step to accepting yourself a bit more readily.

I had a bad time accepting that I might be 'disabled' or 'handicapped' in some way, I think it was all ego. I think I've good qualities, and that helps me accept my weaknesses. And knowing and accepting your weaknesses is a strength. It helps you make better decisions in the future.

Last edited by Moog on 22 Jan 2011, 2:24 pm, edited 2 times in total.

I can relate. I've been to social groups for aspies and they spent the whole time talking about the simpsons. No idea why anyone would think pizza and a "chit chat" is a good idea for aspies. Ive been to one support group, which was brilliant, but it had to stop running, unfortunately.

I feel the whole "omg is that what I'm really like" followed by shame for feeling that way about my fellow aspies.

Oh man, I am RIGHT THERE with you. I went to a support group maybe 4 weeks after I was Dx'd and it made me ill. I have been wanting to wash this disorder off me since that time even. The havoc that I see autism wreaking on lives just makes me want to cry. On the other hand, I am learning more about disabilities and people with disabilities and first impressions than I ever had in my life. I am profoundly changed from my experience of actually talking to these people who appear ret*d but, in fact, have very intelligent and interesting things to say and observe. I have gone to 3 meetings now and it is getting easier, but I was terrified, mad, sad and freaked totally out from being put in a room full of my autistic peers.

We are REALLY a weird group of people.

Autism NZ uses a facility with a hard floor and a no curtains room for their meetings. The echo and noise is unbearable when crowded! How caring, not!

One thing I noticed is that the government head doctors mix and mingle, keep an eye on us for possible boil overs and melt downs, or behaviours that may put the public at risk.

Apart from meeting other aspies, the only thing I got out of it was free espresso and chocolate biscuits.

I would love to know what notes were made of me by Gment paid quacks, but that incisive and critical assessment of my condition will forever remain secret, except to those in authority who are patched members of the G gang.

Going along to aspie meetings is a bit like checking yourself into an institution.....

Are you thinking of anything I've written about such a woman? Because if so it did not end well. I read about her in a book. She actually violently mutilated her own face by the degree of self-injury she did if she saw anyone with WS or even her own reflection. She never got over it. When she was dying, she was inconsolably terrified because she felt she was meeting God and she was horrified to meet a God who would make her like this. She got that way because her parents obeyed what they interpreted as the politically correct thing to do, and not only put her in mainstream education, but went a lot further and kept her away from all people like herself growing up so she never had the support of people with similar experiences. So she grew up believing herself uniquely defective. By the time she saw anyone like herself the damage was done. The author of the book was contrasting her with another person with WS who had always been brought to groups of people with WS and had a much healthier self-image.

I think you're spot on about WP being kind of abstract. You read people's posts and they are very often so articulate and insightful that you don't imagine that in real life the same people writing these posts might appear odd.

I have a lot of mixed feelings myself about going to meetup groups. I've been once, several months ago. Most of the people there appeared to be more stereotypically AS than I do, but they were more outgoing, more articulate and probably smarter than I am. I felt like a fish out of water because I seem more ordinary on the outside, therefore felt like I didn't really fit in, but also felt in many ways more dysfunctional than many of the other people in attendance.

I was also among only a handful of women in a roomful of mostly men, and I did notice that the other women also appeared to be less autistic on the surface. (One woman was stylishly dressed and talkative, but then again another woman was so afraid to talk that when the facilitator addressed her she refused to speak -- I could relate more to the second woman.)

I've been meaning to go again, but I was so scared to even talk, and wasn't sure if I fit in (I felt like I seemed like an interloper for not looking autistic enough), that I have been avoiding going back.

I also understand what you're saying about seeing yourself reflected in others and not wanting to be seen the same way, or even not wanting to think of yourself as being the same way. It can be a very disquieting experience to have a mirror held up to oneself.

pretty strange to hold a large meeting for people with sensory processing issues in a hard surfaced echo-ey room, and to hold an unstructured meeting for a bunch of folks who usually feel more comfortable with structure.

If it was me, I wouldn't go back, unless some changes were made. You come across really articulate here in writing, maybe you could email the meeting organizer and suggest they change the room, or add carpets, softer furniture, whatever to make it absorb some of the noise and also maybe add some structure in the form of activities, like a speaker, or a video, or demonstrations. I don't know. I really enjoyed some of the get -togethers for the local hospital's autism spectrum program, but they had sort of groups spaces set up, some tables where the nurses handed out different pamphlets on community programs, someone was doing a sushi demonstration, how to make it, and if you stood and watched, you could try a piece of sushi, they had a short program of music performance, maybe 20 minutes with a piano and a guitarist, and also they had conversation groups with sofas and coffee tables and there would be a puzzle or other interesting craft material- I think they had one with different beads and someone showing bracelets that could be made ( no video games or anything). Anyway, it was all set up in a big gymnasium that is usually pretty loud, but they had carpets on the floor and the soft furniture and it made it better. They also lowered the lights- not the bright fluroescent lights they usually have on in the gym.

That can cause a person with a genetic syndrome to develop an unrealistic phobia about their syndrome. Mainstreaming people with genetic syndromes in youth and keeping them from knowing others who may experience life the way they do can feed this phobia. On the other hand, everybody is different, no two people are exactly alike anyway, That is a healthy thing to keep in mind.

I didn't experience the extreme feeling of alienation from my identity (I do not have William's Syndrome, btw, but another genetic disorder that no one has been able to name) that leads to self harm. I do have a slight anxiety about it, though. Especially the reality of being so different yet so alike. I have been told by others I exaggerate my differences to my detriment, at times.

I'm really glad you made this thread, as I can really relate to everything people are saying. Like how reading posts on WP is one thing, but meeting aspies in real life is another thing entirely. I've been wondering about whether I should go to my next AS meeting, and I think I'm gonna go due to this thread. The consensus seems to be that confronting this head in is a good way to find acceptance.

I agree with this. The OP should write to whoever runs the group about making changes. It's quite possible that he wasn't the only one comfortable in that group. I think some changes will calm more people in the support group.

It could have been; parts of that sounds familiar. I mis-remembered that she mutilated pictures of herself, rather than her actual self. Ah crap, I can't believe I got that part of the story wrong.