Coping with an Autism Diagnosis

Over the past six years since my twin daughters were diagnosed with autism, my feelings on so many things have changed. When I first suspected that they might have autism, I was so depressed. Although, I had a nephew who had autism I didn't really know much about it.

I read, Let Me Hear Your Voice, which gave me hope that my kids could become "normal". This was before they were actually diagnosed, and I was still somewhat in denial. After what seemed like an eternity, but was actually about five months, we received the diagnosis. Both of my girls had autism.

That day I was fine. I had suspected it for months, so I didn't really react to the confirmation of my suspicions. The next day it hit me hard. I began sobbing uncontrollably at the thought that my children might be nonverbal for life. I worried that people would take advantage of them or hurt them because they wouldn't be able to tell anyone what had happened to them.

I think that I had just needed a good cry, because I was fine for a while after that. Sure I still get sad and have those worries, but crying can be a good way to release built up tension and frustration.

After that I went through my supermom phase. I suspect many other parents go through this anxiety filled stage too. I was determine that if I provided my girls with enough enriching experiences that I'd be able to overcome the learning difficulties that come with autism. We painted, colored, took walks, played with blocks, picked flowers and did so many other interactive experiences. This didn't last too long because I simply didn't have the energy for it.

At the same time I began putting the girls on every wait list for every service I could think of. I was tired of waiting for services, but it seemed an unavoidable part of the process.

At this point in my life outside autism I was getting ready to graduate with my bachelor's degree and working at a part time internship. My parents had been watching the girls during the week for me, but after the diagnosis I decided that I wanted them to come stay with me in my apartment full time. Their move in was only three months earlier than I had planned, but so many things went wrong that I didn't expect due to that schedule change.

I needed a day care for them, but didn't think that finding one would be an issue. I was wrong. We were kicked out of two day cares. One within a week and the other after the girls were there for only two hours.

I later talked with a disability rights lawyer and he confirmed my suspicions that what the day cares had done was illegal. However, all I could do was sue for the right to have the day cares make accommodations for my daughters. I wasn't interested in sending them to a place that I had to sue to get service from. I ended up finding a day care through a friend. I had to drive an hour every morning to drop the girls off with my friend, who then took the girls an additional thirty to forty minutes to a day care at the university she worked for.

The other issue that I was dealing with during this time is that my girls were only sleeping four or five hours a night. I was walking around like a zombie, and they were very grouchy during the day. I broke down and decided to put them on a medication to help them sleep after I almost fell asleep while driving. I felt guilty putting them on a medication. I felt that if I tried harder or if I was a better mom that I shouldn't need to put them on a medication. In retrospect I realize that it was silly to think things like that, but at the time it was a very depressing incident.

Things went pretty well for about a year or so. We had worked out a doable schedule. Then I finally got funding to start an ABA program. This threw our whole schedule out of whack.

I knew that ABA program start ups can be stressful, but I wasn't prepared for my daughters' responses. Aside from lots of crying and tantrums at first, which were understandable, one of my daughters pulled herself bald. She would yank out fistfuls of hair throughout the day. Within two or three days she was bald. I cried almost every night when she did this.

We eventually got her to stop by getting her hair buzzed down to one inch in length and redirecting her when she tried to pull at it. Then about three months later her sister started pulling her hair as well. She wound up bald too. It wasn't nearly as bad the second time around, but I still cried a little.

After everything settled down into a nice routine again I decided to take them off of their sleep medication. Their sleeping patterns weren't perfect, but they were much better than they had been to begin with.

Aside from the occasional bad habits resurfacing (ex. peeing in the floor, taking off all of their clothes and fighting any attempt to put them back on, staying awake half the night, etc.) life has been really good. I've realized that my kids are who they are. I'll love them no matter what. Sure I still wonder what the future holds for us. Now, however, I realize that this is part of parenting with or without autism. I no longer feel isolated and depressed. I am sure that my life may be more challenging due to autism, but having lived with the circumstances I don't think that I'd trade it for anything. I know that autism is part of who my children are.