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.

Sunday, 13 May 2012

Asperger's and Anxiety

Both my daughter and I have been diagnosed on the autism spectrum.  Many of us on the spectrum have a lot of anxiety due to many things, but especially not knowing what to say or do in different situations. 

I think the only thing I don't like about having Asperger’s is the constant anxiety.  I even wake up in the middle of the night with anxiety attacks when not on medication.  Currently I take three medications: BuSpar, Welbutrin, and Ativan as needed, which is at times every day and sometimes not at all for days.  These three seem to have the least side effects for me as opposed to the SSRI’s etc. which had many side effects; the worst for me being weight gain and dry mouth.  The meds were for anxiety and depression but you get more depressed because of the major side effects.  I could always tell when I forgot to take my Effexor because I got electric jolts in my body.  I had to be weaned off of it very slowly because of the withdrawal.

One of the problems with parenting with Asperger’s is that I have to be careful not to pass on my fears and anxieties to my daughter.  I hide it very well from people, and though it is tougher at home, I work very hard not to pass on my anxieties to my daughter.  I don't think she realizes how much anxiety I have. When I am anxious at home, it may come out as irritability or indecision.  At those times, I think she may just see me as a grumpy mother but I prefer that to passing my fears onto her.

I have many strange fears such as worrying there is a shark in the pool although I can clearly see there isn't and can't be because of chlorine.  I'm also afraid that I will get sucked into the drain and  I'm even afraid to be out with the dogs at night in the backyard by the pool, but I'm not sure what worries me.  Those types of fears make no sense.  I made sure to never tell my daughter why I didn't like going in the water.  My problem is that she won't go in the pool unless someone else is in there also.  She told me it is because there might be a shark.  She doesn’t know why she is afraid there might be a shark in the pool and I have told her that it is not possible for one to make it from the ocean to our pool.  Even if it did, it wouldn’t survive because of the chlorine. She has never seen movies like Jaws but she does know those movies exist and she also knows sharks can be dangerous and that they live in water (albeit salt water).  If there are no other kids to go in our pool with her at home, then I have to hide my fear and accompany her but I have to wear water shoes (you never know what gross things are on the bottom!).

Other fears I have make more sense (to someone on the spectrum anyway!).   Making phone calls for any reason is hard.  It doesn't matter if it is talking to family, making appointments, or asking questions.  They are all hard.  I put them off as long as possible.  Some days I am brave and get a few calls done in one day!  The calls are hard because you have to know when to talk, what to say, what responses to give, and you have to process with the other person is saying quickly. 

I don't answer the phone often.  We have call display so I only answer doctors’ offices and anyone who helps us like Kerry's Place.  It's easier than having to call them back.  My daughter knows nothing of these phone problems because I don't tell her I have to make a call until I do it, but it is hard when she wants me to call another parent because I can't usually get out of that one.  It is easier if I have someone's e-mail address but I still have to think of what to say and what responses to give.  It has taken a very long time for my daughter to use the phone herself.  She usually talks to one or two friends on the speakerphone while they play online games.

Two other fears that I have are bugs and thunder and lightning.  I can't call anyone to squash bugs in the house anymore because I can't let on I'm scared too.   I have to be the brave mother and kill the spiders on the ceiling and not screech if they fall on me.

I am better with thunder and lightning now as long as I'm in the house and it's not too bad.  We got stuck at the barn one day recently and it started to storm with lots of thunder and lightning.  I had to be the brave one and tell her we would be fine and when to run to the car and then from the car to the house.

Another big source of anxiety is leaving the house to even go on a walk.  You don't know who you're going to see, if anyone.  What do you say or do?  What happens if you are somewhere and you see someone you know but they haven't spotted you?  Do you to try to be brave and go say hi or do you try to leave the area because you don't know what to do?  It is easier if I have my daughter or someone else with me because I just focus on them.  Being a parent has forced me to confront my own comfort levels on a regular basis:  I've had to go several places that I would not have normally gone because she wanted or needed to-- I can’t very well tell her no because I'm scared.
My daughter has many of the same anxieties that I have.  However, we have always worked on hers with professionals and in social groups, so hopefully when she is an adult her anxieties will be less pervasive than mine and she will know how to properly deal with them instead of avoiding things and becoming depressed.