It's About Us

[George Newman]

Many of you know that I was officially diagnosed with high functioning autism (HFA) late in life; just last year. My life was falling and completely fell apart. I will be 48 this year. I've spent a year wrestling with the scope and implications that have come with this diagnosis. I have come to understand many pieces but many other pieces I do not understand. With that said; I am exhausted with me.

It seems I have come to realize that much of my autism I have to figure out, adjust to, and understand. I have also come to see that much of my understanding wont be realized with me sitting at home day after day after day selfishly thinking about me all the time. I intend to query my psychologist and see if she would be interested in co-founding a HFA group for adults here in my area. Currently nothing like this exists in my area.

Doing this is off-the-charts frightening to me. I'd rather not do it but I can't come up with a good reason to not do it. I did make a list of reasons why I shouldn't and it was long. Every reason for why I shouldn't was about me. Everything right now is about me.

Thru my membership and participation here at Aspies Central, I have come to understand that it's not only about me. It's about us. Many of the feelings and emotions that we are going thru are very personal but they are very similar if not exactly like what other aspies are going thru. Autism is about us. Many of the fears, challenges, and concerns that we are going thru are very personal but they are very similar if not exactly like what other aspies are going thru. It's about us.

I may chicken out and just go home and sit. No one could show up to the group. Maybe so but I do want to thank this group here at Aspies Central. My friends and family for all your support, creativity, and candor. I appreciate it. You have helped me beyond imagination. Autism truly is about us.

 

[RetiredDinner]

Sorry if what I'm about to ask and say is ignorant, I'm saying it with good intentions:

How did it make your life fall apart? I might have difficulty imagining, since I got diagnosed at a very young age, but it's just a diagnosis in my eyes. You were and still are the same person as you were before the diagnosis. It's as if someone with a broken leg goes to the doctor and says "I can't move my leg, and it hurts, doctor. Please help!" and the doctor says "Welp, that leg is broken." The leg is equally broken as it was before the diagnosis.

 

[Thinx]

A group sounds like a great idea yet I understand your ambivalence cos it's scary and somewhat counter intuitive. With social challenges how easy is it to found join or benefit from a group? Ooer brave idea and good idea to see if your psychologist wants to cofound it. I like to be in groups but some structure and facilitation seems ideal. Good wishes for this George.

 

[marinus]

It's a matter of motivation, theirs and yours. I've tried 3 'support' groups and they all proved to be outlets for individual whining (poor poor pitiful me!), and in socializing.
What i'm trying to say is- they weren't interested in trying to understand themselves/their autisms, so they probably frustrated other members, and certainly themselves.
The urge to huddle and the urge to understand may overlap, or not. For me, they have not.
It's like going to a play or a lecture- most people go for the social zing, not for experiencing anything Cultural or transformative, but they lie about it.

 

[Gracey]

Sorry if what I'm about to ask and say is ignorant, I'm saying it with good intentions:

How did it make your life fall apart? I might have difficulty imagining, since I got diagnosed at a very young age, but it's just a diagnosis in my eyes. You were and still are the same person as you were before the diagnosis. It's as if someone with a broken leg goes to the doctor and says "I can't move my leg, and it hurts, doctor. Please help!" and the doctor says "Welp, that leg is broken." The leg is equally broken as it was before the diagnosis.

Pre diagnosis that broken leg prompted a strange gait.
A pronounced limp.
For almost 50 years that strange limp conditions us to behave in such a way just to be accepted.
Fight it, hide it, try to disguise it- which is exhausting,
No matter what we try that limp just isn’t disappearing and we have absolutely no idea why.
It’s frustrating as hell.

Attempting to continue to walk normally puts stress on other muscle groups and joints resulting in faulty posture and strain eventually leading to other co morbid conditions
(Which may not have happened should the break have been spotted, diagnosed and correctly supported)

The break has been with us for so long it’s now part of us but we never thought for one minute our leg was broken.
A doctor may have told us we’ll never be able to run along side everyone else because our seratonin gets cleared away too quickly in our brain so we believe the qualified expert and accept that too, even though it’s got nothing to do with our limp.

Then comes the day we stumble across the signs and symptoms of a broken leg whilst reading.
And it makes perfect sense.

Everything we were convinced of for fifty years has to be stripped down and rebuilt to accommodate the new information.

A bit like a broken leg healing incorrectly and having to be reset, plastered, supported, physio, crutches, learning a new way to walk and strengthen the incorrectly used muscle groups.

A little bit like that I’m guessing

 

[George Newman]

A group sounds like a great idea yet I understand your ambivalence cos it's scary and somewhat counter intuitive. With social challenges how easy is it to found join or benefit from a group? Ooer brave idea and good idea to see if your psychologist wants to cofound it. I like to be in groups but some structure and facilitation seems ideal. Good wishes for this George.

I haven't thought this thru really. I may meet with my psychologist and she may have really compelling rationale that I haven't thought about and the whole thing could be for not. It just seem as though I am so self consumed with this diagnosis and need some way to crawl out of this "poor me" hole.

 

[George Newman]

It's a matter of motivation, theirs and yours. I've tried 3 'support' groups and they all proved to be outlets for individual whining (poor poor pitiful me!), and in socializing.
What i'm trying to say is- they weren't interested in trying to understand themselves/their autisms, so they probably frustrated other members, and certainly themselves.
The urge to huddle and the urge to understand may overlap, or not. For me, they have not.
It's like going to a play or a lecture- most people go for the social zing, not for experiencing anything Cultural or transformative, but they lie about it.

Your probably right. Maybe I will scrap the idea. I understand what you are saying.

 

[Gracey]

George if you want to go for it, then please do.

I have thought about something similar as, like you, there is absolutely beggar-all for adults diagnosed a little later in life on offer in my local area.

I didn’t want to start a “pity-party” but somewhere for people like me to gain information and understanding, relaxation techniques, guest speakers? Healthcare and wellbeing professionals? Legal or workplace advice?

A bit of a one stop shop for adults going through the changes of a later diagnosis.

The thing I’m thinking about at the moment is where to draw the line on age.

Can’t move for services available for children and parents of those on the spectrum.

Nothing for middle age and older though.

 

[LucyPurrs]

Encourage you to go for it George. Groups can be very helpful: in a successful group, people share benefits of experience, provide support to each other and give valuable feedback.

 

[the_tortoise]

I have gone to a couple of groups for autistic adults in my area and may do so again, but right now I don't.

Do you have anything to lose by trying? If not, I say go for it -- it could turn out to be a very positive and valuable thing for you and for others.

If you do have something to lose, well, I guess it's a cost-benefit analysis with lots of unknowns that you will have to sort out for yourself, and I wish you the best of luck in doing so!

 

[the_tortoise]

It's a matter of motivation, theirs and yours. I've tried 3 'support' groups and they all proved to be outlets for individual whining (poor poor pitiful me!), and in socializing.
What i'm trying to say is- they weren't interested in trying to understand themselves/their autisms, so they probably frustrated other members, and certainly themselves.
The urge to huddle and the urge to understand may overlap, or not. For me, they have not.
It's like going to a play or a lecture- most people go for the social zing, not for experiencing anything Cultural or transformative, but they lie about it.

I don't like pity (of myself or others) since it seems to always involve a measure of disrespect or looking down on someone. That said....

Sometimes people need to "whine" -- they need to vent and complain -- actually, literally, need to in order to cope with or get past difficult things. I don't think it means that a person is not interested in trying to understand themselves or their autism.

I think I get what you're saying, though -- an autism group can be many things; A place to vent, a place to socialize, a place to engage in problem-solving, a place to learn and share information, a place to work towards all kinds of possible common goals. Defining the aims of the group is probably important to its success, or at least to its sustainability (even if the aims change over time).

 

[tducey]

Yeah, I would. This forum is quite helpful but it's always good to have face to face conversations with people.

 

[Mia]

Would like to think that it's my own distinctive personality rather than autism that makes me who I am. Yet, there are so many similarities that I can't ignore. Somehow, it made me feel less of an individual as I researched the traits. Perhaps the premise of individuality is ego-driven in reality and it may even be somewhat arrogant to assume such. And so it follows that meeting with other aspies in person rather than online would necessitate a volte-face.

Which might be helpful, even alter my own tendency to think of myself as the sole person who perceives of the world as I do. Considering nature and nuture as the basis of individualism, would create slight differences yet not quite change many autistic traits. The realization of that, has true ramifications.

Perhaps in the process of attempting to meet others, there is an element of social cooperation that makes us 'useful, honourable and compassionate'.

 

[Nervous Rex]

I’m not sure if I would go or not. First, my life is very, very busy, and it’s not going to get any less busy for a long time.

If starting a group scares you, and if your only reason for doing it is, “because you can’t think of a good reason not to”, maybe consider meeting with someone on a one-on-one basis first.

I suppose I would be more interested in a “seminar” than in a club. For example, attending sessions on how to cope with various aspects of life would be interesting. But honestly, I’m getting those kinds of answered here on AutismForums.

Going to hang out for the sake of hanging out might be interesting once or twice, but it wouldn’t work for me long term - I just don’t have the time and energy right now.

 

[Thinx]

I think it might work to have activities as well as whining time and discussion, plus some speakers or inputs on things that seem helpful. I can picture myself doing lego building perhaps we are all making a town so we each design a little house, then put them together. Then we sit and whine and blah. Then we have an input on something. I would enjoy that. And some outings to places of interest or walks?

 

[SusanLR]

My psychologist that diagnosed me actually wanted to start an adult asperger's group. She would be over it of course, but, she ask if I could be like a group leader and I agreed.
We wanted a variety of things for the group, like @Thinx
posted: Activities, outings, speakers, play time, whine time.
I handed out pamplets and adverts at various public places and to other psychiatrists in the area but it never got off the ground. One person showed and never came back.

She felt one of the biggest benefits would be something to get us out of the house and hopefully become more comfortable in a social setting. Yet that was the main reason people who called about the group admitted it stood in their way.
Social discomfort and ambition to get up and go to it.

I don't live in a small community either. So there are
plenty of people going to therapy and getting late diagnosis in the area. Wish it had happened.
But, that is how it was here.

 

[Progster]

Sometimes people need to "whine" -- they need to vent and complain -- actually, literally, need to in order to cope with or get past difficult things. I don't think it means that a person is not interested in trying to understand themselves or their autism.

Yes, I agree with this, it's a coping mechanism that some people have, and it's unfair to judge people for it as being egocentric or narcissistic. Having depression, having problems can be very lonely, because people generally just don't want to hear about other people's problems. People sometimes just need an outlet to talk about their problems or vent their frustration. If the main purpose of the group is to be a support group, then people need to be able to do this without judgement. If it is a social group, then the emphasis should be on the social activites, with perhaps some sessions or times where people can talk about their problems.

Sometimes (mainly in the past, not so much now) I get accused of 'whining' or 'moaning' - words which I detest because I find them so dismissive of issues which may not mean much to the other person, but which are important to me. I need people to listen with respect and take my concerns seriously, and not dismiss them because the problem seems trivial to them.

To answer the question, I think that I'd give it a try, though I would find it difficult to go to because I get very anxious when meeting new people, and I'm not so sure that I'd fit in, I have communication difficulties in groups. But I'd try.

 

[Sid Delicious]

Having co-founded a local group myself in the past, I would say go for it as it will at the very least give you something to focus on and boost your confidence. I had to move to the other side of the country to get work during the recession, didn't know anyone there and felt really isolated. So despite having zero experience even organising a scout group, I figured if no one else was going to start a group then I would (I dragged my partner along too). The first few weeks only one person came, then we put out leaflets in shop windows and ads in local papers, etc and then the fourth week another two people joined up. It took a while for a core group to get established, but after several months there were about ten regulars coming along. And by the time you get a regular group, there are always one or two people that absolutely love to manage others and have the social skills to do most of the organising for you (absolutely fine by me). After that point it was just a case of turning up and occasionally answering questions from new members (we had a Facebook group going too). Then I was able to just go along to the group I wanted to exist in the first place. As far as I know the group is still meeting up regularly seven years since we first created it. It just took someone to get things started.

The main advice I would give is plan out a loose schedule of the meetings, so people know what to expect and there is less chance for anyone to overtake the group with 'whinging'. Yes, it's good to have an outlet, but some people will naturally dominate every meeting with their specific issues unless you manage things. I would suggest focusing on a specific activity too, so it isn't just a meet-and-chat group (which will put off a lot of people). But allocate some time every meeting to discuss practical solutions to some issue (dealing with work, relationships, family, children, travel, etc). You could pick a different core subject each week (or invite people to suggest one they would like to discuss) and keep the focus on shared experiences and practical solutions. Have games and practical tasks to get people involved even if they may not feel like doing much of the talking. That way everyone can be involved but it's harder for one person to take over. Someone mentioned Lego - Lego Therapy sounds like a brilliant idea for a meet up! I would go along to anything involving Lego, but then I'm fairly easy to please!

 

[paloftoon]

A label is just that, a label. You don't have to let it hold you back. In fact, don't! Look at this as an opportunity to empower yourself. Since you have more information to become more self-aware of yourself, this information can potentially help you work on your weaknesses so that you can be more fluid among society or the circles you end up in. You have no obligation to disclose your diagnosis to others unless you feel comfortable or think it's worth the risk. The only exception besides your family and best friends maybe are programs that require a diagnosis in order to apply for said job. It's never easy, life is not. But it's possible to make happiness. I'd rather have his label than many of the other ones out there that can be harder to overcome those kind of barriers in order to function satisfactorily to yourself and for those you want to be around.

 

[HidinginPlainSight]

There is one in my city. I have had the group open on my phone for 6 days now but haven't joined. Part of me wants to, but another part tells me that doing so wouldn't work out so well.

1) There are only 4 members. I would feel awkward joining a small group where I don't have the ability to blend in and not participate.
2) That said, if the group was too large that would deter me as well. The potential to be overwhelming would be too much.
3) I don't think I have the ability to help anyone with much of anything.
4) I'm a difficult person to deal with in general and I doubt people with a similar disability would find me any easier and, perhaps, vice-versa.
5) I know myself, and I know regular attendance would not be possible due to my need to be left alone much of the time.

Still I haven't closed the page yet because, despite all that I just wrote, I do want to make an effort to socialize. I suppose the point I'm making is the fact they may have something in common with me it's no less intimidating.

So option 3.............maybe.