Joining a support group?

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I went to a parent orientation meeting at a resource centre in our area. They followed up with a call so they could discuss the supports available. Everything is downtown and hard for me to get there. I've gone to this resource centre twice and I've gotten lost both times at different points in the journey. I also explained that I won't go there on my own because I won't go up or down stairs or escalators with my son. He always wants me to lift him up and stairs are difficult enough for me as it is. (I have major problems with going down stairs especially)

She recommended going to the parent support group- but I find that sort of thing very intimidating. I hate trying to find my way there, and then when I am there I don't feel comfortable talking face to face with a group of people I don't know. It causes more anxiety for me than anything else.

Then she asked if my husband would be willing to go... now, I know my hubby and he can find his way there- he just won't stay. He won't even go to the workshops that they offer.

Does anyone else have this sort of trouble?
Would you or have you joined a parent support group?
If you are a part of one, do you find it useful?

I belonged to a small support group and then took it over when the facilitator moved on. it depends on what you want. I morphed the group into a club of sorts where we greeted new parents (new to dx and info) and just talked about "stuff". We also had community members come and introduce themselves and their services. People that provided services to the disabled, parents, etc.
I have shied away from Autism Sociey (you're in UK? I'm sure your is different) because they are notoriously curebie and/or pro-medical intervention. My husband went to a meeting and the women talked non stop about not trusting schools and all the medical jargon they inflict on their kids.
Recently, I went to a non-Autism Society meeting (I asked at the meeting who was sponsoring it). But even though it was "independent", there was an Autism Society rep there and I just kept my mouth shut about it. Very chilling for discussion for me. And the parents were all talking medical stuff and talking about 40-HOURS/WEEK ABA THERAPY FOR SMALL CHILDREN!!

Another problem with parents is that they are so fond of acronyms. "Have you tried the ABA from the TEACCH and the yakkity-yak???" Acronyms go with organizations, teaching methods, locations, everything. And the less you know, the more you look like some newbie who just fell of the turnip truck of Autism. They treat you like you're ignorant and "not doing everything you can for your little pumpkin".

Can you tell this is a touchy subject? But I'm going to try another group here. I'm going to cross my fingers and go because it just might be independent.

I'm in Canada... but I know what you mean about the acronyms and such. When I went to the parent orientation meeting I felt like a freak because I was the only one there that could identify with my child. They made us introduce ourselves to the group and talk a little bit about ourselves... and I just felt like an outcast when I mentioned that I had some of the same issues as my son. I stay at home so I can take care of him, and some of the parents there made it clear that they thought i should have him in a daycare instead. His symptoms first presented in the daycare setting, and he's improved greatly since being home with me. There's no way I'm going to put him back in that environment.

I've never checked out the autism society here... but if and when I do, I'll be wary of the curebies. I'm not impressed with the way they go about things. I don't want a cure for my son... he's such a sweet and amazing child. I just want to help him where I can.

I'm not able to socialize easily, so no, I would never go to such a group. I wouldn't fit in at all and it would be more anguish than it's worth. I think I would also infuriate most of the parents there with my opinions! I'd probably be kicked out.

yeah, that's the guilty conscience/herd mentality telling you to do what the other sheeple are doing. It has less to do with autism and more to do with modern parenting. People just don't hear that you're a full time parent, they'll keep asking when you're going back to school or work.

i tried going to a parent support group, but felt quite awkward as i work for a local school system that services many of the parent's children.........it turned into me supporting them & talking about work/school instead of me actually feeling supported.
i think you have to find the right group...just like when you went to school...some groups you wanted to hang out with and commiserate, and others you couldn't wait to get away from !

Ster, that's a big problem with support groups. The group I joined was intended to be a parents' group, with no leaders. But sheeple need to look up to someone. That's why the facilitator backed out because she had never intended to lead anyone. There was this big focus on "guest speakers" but someone needs to be "in charge" to be a contact person. It turned into a mess, quite frankly.
I just want to meet people I have something in common with, over coffee, drinks, whatever.
I don't like talking about "problems" and then people making helpful suggestions in the form of email addys, phone numbers, officials and such. By the time I get home I have no idea what any of the info means.

I do belong to a local AS/autism support group here and I love it. It was especially helpful to me when we first got our dx because it gave me someone to talk to. It helped me so much just hearing that it wasn't only me that had been going through all this crazy behavior for so many years, I always though I just had a weird kid (and I was FINE with that). We never knew it was autism related. So it was quite shocking at first. Our group usually has some sort of guest speaker and if we don't then we just get together as parents and talk about what is going on with our kids. It just helps me get perspective and establishes contact with other parents that have the same challenges and problems as me. Most all of the parents have kids older than mine and they give me ideas and suggestions of things to do later before something can become a problem or what they did in the past that is relevant to me now. I also always take a notebook

support groups can be great for getting new ideas !
i just haven't found one that fits me yet. my son's school has one, but they never meet at the same time or day of the week ( they meet once a month)..they usually have speakers.

I fell into our local AS support group by accident. I was told that it was a support group for parents of children with behavioural problems, so I showed up only to find out that these women (and the local primary school integration teacher) were all Mums with AS kids. It was very odd for me, having all these women whose kids had a real diagnosis, who had all the same problems I did. I identified with their struggles. With the Mum whose kid was agressive, who head banged in anger; the mother whose son had started to threaten suicide in a very AS way "What's death like? If I killed myself, would I feel it?" type of thing. My daughter went through her fascination with death at age 3...luckily none of our animals were killed in experimentation...nearly though
This group is fantastic and the women have a lot of knowledge and techniques for dealing with different behaviours. There is even a mother of another Aspie girl there!

As it turned out, 6 weeks after falling into that group, Hannah was diagnosed with Asperger's. Didn't make the blow any easier to bear, and am still dealing with it as it's only been 4 days. But right now I am eternally thankful for having that support group.

There are good groups out there. Its just a matter of finding the one you are comfortable in. The autism is getting so "popular" there will continue to be more groups spring up. The first group I tried to join told me flat out as an Aspergers adult I was not welcome to join because they think Aspie adults are troublemakers and are a bad influence on autistic children. Say what? How can they just pigeonhole all people into one slot? They know nothing about me.

A couple years went by and I just happened upon another group and I enjoy going to their meetings. Its not just a parents group but also is lead by a socialogy professor with an interest in autism so there is a board of leaders then anyone else is welcome including adult autistics. New parents tend to show up at each meeting and we let them ask questions awhile but then it gets down to business. I think what makes the group work is we have projects its not a meeting just to b***h and moan. Pardon my language but having been in a variety of groups that about sums up the typical support group experience ASD or otherwise. They have several fundraisers going on and they actually seem to want us adult Aspies around which I am still trying to fathom. Like they put me to work right away lol working on several projects and they want me to be part of a presentation to doctors and nurses on how to deal with autistic patients. Its just surprising for me to be asked sometimes begged to take part in things when the other group's leader told me how terrible I must be just because I'm autistic.

The Best support group is the world...

try not to conform to singular society though!!

Last edited by Erlyrisa on 12 Mar 2007, 5:44 am, edited 1 time in total.

Erlyrisa~ some NTs need to hear that they're doing a good job...especially when they are faced with parenting someone who is not the "average"...a support group can help give you new ideas, and hope.

Good piont - is there a way to delete a post?

I agree. As a NT I do need to hear I am doing the right things to help my child. I want to the best I can to help him. The support groups let me do that and I get lots of ideas and suggestions. For example, one of the problems I have with my son is communication. He can't tell me about his day at school and doesn't want to talk about it. One mother there (who happens to be a special ed teacher which is VERY helpful) gave me the idea to ask my son only two things about his day, what was the worst part and what was the best part. This has been very helpful in working on communication skills with my child. Also, our last meeting had a 17 year old kid with AS and he told us what it is like from his perspective, what helps him and what doesn't. The things that he NEEDS in school etc. I love my support group, it gives me a support system that I don't have elsewhere (except for here of course). I don't have a big family and my mom is very supportive and understanding but she lives away from me and sometimes I just need more! I have been lucky to find a group right away that I fit into.

I think its good for moms to go to the support group and would be even better if some of the dads could be dragged along too. Actually there's a few dads that come to ours but mostly the women have to come alone. It helps the moms to get to talk with someone else that understands where they are coming from. Half the frustration with raising an autistic child has nothing to do with the child, but is instead frustration in dealing with the dumbass school systems, psychs and getting IEP's etc. This is a new thing as old Aspies like me never had an opportunity to get different schooling. We were just thrown in with the rest of the herd. But some of these moms are really going out of their way to make life better for their AS kid than it was for us and they are constantly feeling like they hit brick walls with teachers. Some of the teacher stories I have heard are unbelievably horrible.

Also I think it helps some for the parents to be around Aspie adults at meetings (that is for the advanced groups that actually allow the adults to attend). They like to ask us questions a lot and sometimes we can put a voice to something that their kid is too young to express yet because we have been through it all. But sometimes the moms ask so many questions I get mortified into silence and can say only "uhhh, ummm..." .