Thursday, June 21, 2012
I only know of four people with Autism Spectrum Disorders that went to college. Of those 4, only 3 have diplomas. One of them was still in the process at a community college. One worked as a mental health case worker. Another one wrote articles for a living. The third was a professor at a college. I guess the point to all of this is that it is possible for people with Autism to get degrees and have professional jobs. Of course not everyone is cut out for college. Similar to all the people in the world, some are cut out for college and some are not. Of course these three people have gotten sometimes extensive support to handle the social pressures associated with getting their degrees. Of course, of course, of course…but it is possible.
Tuesday, June 19, 2012
I’m fascinated at the theory that people with autism may have been such a mainstay of civilization years ago. During a time when people had to always be on the lookout for predators or the enemy people with autism would have essentially been the look outs. Going along with this theory, people on the autism spectrum would have been sensitive enough to their surroundings and other people that they would have seen and felt things the rest of the world missed. This was a valuable skill. Now there are so many inputs into a person that it becomes never ending noise to a person with autism. Constant input is even painful. It wouldn’t matter if the input is audible, visual, something that could be felt, or a combination of any of these. It could cause pain. This so accurately describes my daughters. One of my daughters will start to cry or get angry for no reason. Typically we will be in a group of people where someone will start crying or get angry at the exact same time she does. It’s almost eerie and has happened more times than I can count. Taking this a step further, we are cluttering up the world with so many sights and sounds. This clutter is to the detriment of people who are so sensitive. To carry that a little further those people then act out with what we consider inappropriate behavior. That, at least for me, is a shocking thought.
Wednesday, June 13, 2012
As promised here is one of the stories since DD (Dear Daughter)stopped the medication for headbanging. As you know this is one of the possible serious problems you may have to deal with when you have a child with autism. Not all children with autism headbang or have self injurious behavior. As I'm sure I have said way too many times my oldest daughter is my child with full blown autism. Anyway the medication DD was taking was in short supply so the doctor and I decided to try going without it. There were other medications we could try but it had been many years since we had started this one...11 years. The first thing the provider and I noticed was that she was alot more verbal about what she wanted. Now at my house and now at her own house being a verbal independent person was considered a good thing. I do understand that other peopel value being calm and controled but we were passionate and out spoken. I consider both sides to be equally useful values. Not everyone else has that viewpoint. Although the provider certainly was not complaining, they did share with me that at one point she fussed because they had not warned her that a new staff was coming to her house to train. I agreed with DD. The should be routinely checking with her when there is going to be changes. Then it was my turn. DD called me one Sunday while I was working. We were just chit chatting and I said something to the effect of 'I wish I could take a nap.' DD procedes to remind me that she cannot take a nap because the provider and I have said it wasn't a good idea. In my defence what was happening was the DSP (direct service personnel) were letting her sleep all day and she was up all night. She was up and upset during the night. So no nap. Or at least not one without talking to me or the supervisor. I explained this to DD and changed the subject. This is a technique that had worked and worked easily. DD just forgets about what she is fussing about. At least she forgets most of the time. Which is fine. Somehow we got on the subject of her sister. I told her to call her sister and talk. Maybe a half hour later DD calls me back and says her sister didn't answer. Without thinking I said 'She's probably taking a nap.' DD responded 'A NAP. Why she get to take a nap and I don't.' And on and on. Finally I'm laughing and trying to interrupt to find out who the staff is on duty today. DD tells me and lets me talk to the staff. I ask them to 'Please let her take a nap.' Then I talk to DD and tell her to go ahead. She said, 'Fine!' Considering how difficult it is to facilitate communication when someone has autism I'm thrilled. This is just one of several instances in the past few weeks that she has been easily able to tell me or someone else what is the matter. What's more she's been able to hang onto the subject and follow it through. I really wonder if this is due to the medication being removed. It was and still is more important to me that she is not hurting herself. But given that that behavior seems to be gone...I'm terribly pleased at the difference in the way she thinks. Although I talk about autism behaviors and what to do about them I want her to know what she wants and to make efforts to get it. Autism or not she deserves that.
Monday, June 11, 2012
One of the medications we depend on for my daughter is in short supply. I'm not exactly sure why. The pharmacist and the doctor say it's a problem somewhere in production. Unfortunately, similar to other members of a sub-group of chidren with autism, this is the medication we have used for years to help control the head banging and self injurious behaviors. After a long discussion and much trepidation we have decided to go without it. I have been very worried. It's been a month or maybe six weeks and I am very pleased with the results. Let me explain. We have not had but one or two incidents of any banging. Even during those two incidents all she did was bang her hands on the wall. We have also seen some positive changes to her thinking that I will talk about in my next post. I must say I was really scared. She would bite herself and bang her head on the floor as hard as she could. Granted this had been years ago. She's 23 now and the last period was when she was about 12. So she had been on the medication for 11 years. I suppose I needed to talk about this because it's so important to regularly thinks about what medication our children are taking, why they take them, and how long. I can't say I would have thought of it myself or even been willing to have her take a holiday from this particular medication. I do believe in as little medication as possible though. The positive changes are definitely icing on the cake. Do you have a similar experience with medication? Please see my next post and one of the stories of positive changes.