I took the time to sit down and interview my mom about how she has dealt with living with Autism. Here’s what she had to say:
When did you first find out Claire was autistic? She was 2 ½ when diagnosed by a doctor, but I was suspicious before she turned two because she started to lose language and gross motor and fine motor skills.
How long has she been diagnosed? Around 19 years.
What was the hardest thing in the beginning stages of Claire’s diagnosis? Learning that she would probably never recover and there wasn’t a cure for it.
What were the early signs of her autism? She started losing her language and eventually lost all of it. She started getting clumsy, falling down a lot, not being able to do the usual things that she could. She drew into herself, she wasn’t as animated. Her personality changed. She looked spaced out a lot of the time and she wasn’t interested in interacting with anyone. She was a happy baby but she became very unhappy, crying a lot and acting fussy.
What is the hardest thing nowadays with Claire? Her lack of independence at an age where her peers and siblings have become very independent. I still can’t leave her by herself at home for more than 20 minutes. She will always depend on me or her dad or her siblings for a multitude of things. Also, the older she gets the harder it is for her to have meaningful peer relationships.
Have any other complications arisen since her original diagnosis? Yes, she developed a seizure disorder about four years ago. They are primarily nighttime seizures but she has had one daytime seizure. It is controlled by medication, but having this disorder makes it even less likely that she will be independent.
If you could go back and make her “normal,” (she’s more normal than most of us) would you? Probably, it’s too tempting not to. But I don’t know if I really mean that because there have been so many positives. I think I would do it more for her sake than for my sake, because I believe it would make her life a lot easier.
What is the best thing about having an autistic child? Oh there are so many . . . . There have been so many positives but probably the most positive is that she has taught us how to find joy in the small, simple things. I take nothing for granted anymore. One example is her finally learning to brush her teeth, or learning to swim.
How have you used this experience in your interaction with other people? It has made me a lot less judgmental with others. I am much more accepting of people’s quirks or anything that makes them different. Also, because of that, I went back to school and got my masters in clinical psychology and many of my clients have children with special needs and I try to help them with the challenges that they face. I definitely would not have done that if it were not for Claire.
What has Claire taught you? Patience.
How has Claire changed the dynamic of your family? For better or for worse? Definitely for better, it made us all much more compassionate people and I feel like we really rally around her to take care of her and support her and make her feel loved. I think through that other people affected by a disability have realized that it’s not the end of the world.
What kinds of interventions have you done, and what worked the best? We’ve done a lot of interventions. Behavioral therapy. Gluten and Dairy free diet which helps some kids with autism think more clearly. Sensory integration therapy. Speech therapy. Lots of tutoring. 30-40 hours a week of in-home behavioral play and sensory therapy from age 2-5. The sensory integration and behavioral therapy seemed like they had the biggest impact.
What do you think caused Claire’s autism? Was it hereditary, or did she get it after she was born?
I think that she was probably genetically predisposed to it, and certain factors combined to cause it. I’m not sure what the factors were but I think her chronic ear and sinus infections caused her immune system to be weak and that the vaccines that she had at 18 months could have contributed to weakening her system even further. Clearly she was fine until about 18 months old because she had such a dramatic personality change and lost so many skills.
