Tuesday, 22 May 2012

Alien In The Room

I have been attending Autism-related parent support groups for about 7 years now.  I attend as a parent, not as an individual with Asperger's.  That's because in our area, there are no groups for adults on the spectrum.  The parents who attend the groups are mainly those with children under the age of 18.

I started out going to the Autism Ontario York ChapterParent Support Group.  It is for parents whose children are anywhere on the spectrum (although they are mainly kids with autism).  The next fall I started going to the Kerry’s Place Asperger’s ParentSupport Group also.  Although my daughter is autistic, she is more able than some kids with autism. This means I can get something out of either group.  However I do find the Asperger’s group has some parents who seem to act a bit more superior than the parents at the Autism support group.
To me it is all autism.  We just have different abilities: I may be able to have a conversation and hide most of my stimms, yet not be able to speak around people I don’t know;  someone else may be completely nonverbal and stimm obviously but be able to do presentations.  There are some people with Asperger’s who want nothing to do with being labeled autistic even though they are on the autism spectrum and therefore autistic.
I have a lot of trouble going to support group.  I have severe anxiety about attending:  I have to make sure I am there early so no one arrives before I do;  I have an obsession with being on time; I have to sit in just the right place each time, and I don’t know what people will talk about. 

I find it easier to be in a room first before other people trickle in.  It is very hard to enter a full room.  I don’t know where to sit, which person is less threatening to sit beside, and I might not have my escape route when the room is already full.   (Not that I would have the courage to leave during a meeting anyway but it is there just in case.)

In both groups we usually go around the room and introduce ourselves and tell our child’s name, age, and diagnosis.   It is very hard for me to say those things and I repeat what I am going to say many times in my head.  I still have trouble getting it out properly and I don’t make eye contact.  After that, for the rest of the group time, I am mute.  It doesn’t matter how much I want to say something, I can’t physically get it out.   I sit through the whole meeting looking at the table, walls, or ceiling.  The Kerry’s Place group is larger and I don’t know anyone to talk to them.  Many years ago, it was smaller and I got to know some of the regulars enough that I could actually comment at times.  That group has really grown over time and I can no longer speak.  I do speak a little at the Autism Ontario group when there are 4 or 5 of us regulars.  I do best with very few people but that is not the point of a support group!

I value going to the support groups because I can learn things from other parents and it is a way for me to get out of the house (something I have trouble doing). There are drawbacks though;  the extreme anxiety going in and getting through the introductions around the table, not knowing what to say or how to say it, and then what awaits me when I get home.  Many times I come home to some sort of disaster.  It could be my husband and daughter arguing, my daughter not cooperating, the house a mess, or dogs not taken care of as I had asked.   Those nights, I tell myself it is just not worth going to the meetings.  I come home to chaos, I have severe anxiety, and I can’t talk at the meetings anyway.
Sometimes the meetings themselves are upsetting.  This is usually when parents start talking about their kids and generalize what they do to all people with Asperger’s.  I feel like an alien in the room, the way they talk about us as if I’m not there.  I guess they either weren’t listening when I introduced myself saying I had Asperger’s, or they just don’t think (something they complain about in their kids!).  I get frustrated when they say things like we won’t be able to drive (I do), and we don’t believe in God because it’s not logical.  I am a Christian and find the Bible very believable.  There is even a GRASP group for Christians on the Autism Spectrum.

I wish there was some way I could communicate to them that we are not all the same just like they aren’t and they shouldn’t be talking about us as if there is something seriously wrong with us.  We just need extra help in certain areas.
I end up driving home very depressed some nights because I want to tell people my opinion on some of the things they bring up because it may help or they may understand something better.

Over all, going to the support groups is a good thing because most of the time people are supporting each other and not putting down people on the Autism Spectrum.  They just want to help their kids like I do.  It’s also a bonus to get out of the house and go to a place where I should be able to be myself a little more because they should understand.