AS Interview Part 1

I was working one day for one of my jobs when my boss and I were discussing my independent study about Asperger’s Syndrome. She mentioned that our other boss has a son with AS. I was so interested and curious that I immediately asked if I could question her as to her son. She said she would love to help me out and agreed to an interview. Not only did this interview open my eyes about the life of her and her son, but the responses really allowed me to see AS from a personal perspective. I feel very close to her and I never knew her son had AS, this made me not see them differently but see them in an educated light. I feel really lucky that she was willing to share her answers and her story, as well as we son’s, with me. I only wish that more people in the world could see those who have AS and their families with a new found respect, for having and dealing with something that another person simply cannot understand. I hope that others who read this interview will see it as incredible as I do.
Interview on Asperger’s Syndrome:

1.) What is your definition or understanding of Asperger’s Syndrome? (Did you have knowledge of this when you were younger?)
- I had absolutely no idea of what Asperger was when I was younger. My definition of Asperger’s was a disorder that in mostly linguistic and social. Many Asperger children are extremely brilliant however focus almost like OCD on one fixation.

2.) How is Asperger’s present in your life? (How have you come into contact with it and when did it first occur?)
-A day care provider who was a speech therapist had noticed that my son did not really have developmental speech for his age. He was tested at X- daycare (not to be named) and there were irregularities, he received speech therapy for at least one year before starting kindergarten. He was then tested in the first grade and his scores showed over a 20 inch spread (Wilson or Johnsons), when these scores were aggregated it did not show up however separated they did. There were many complaints about him, wouldn’t sit properly in a chair, refused to work, social interaction on play ground. I took him to a child neurologist in Portland who diagnosed him with Pervasive Development Disorder (DSM III). Took that back to the school during a PET and they said it was not specific enough and disagreed. The neurologist, Dr. Stephen Riox, diagnosed him as Asperger Syndrome. He had not put that in his report because the DSM IV was not out yet. He was in the second grade (1991?).

2A.) What causes AS (can it be prevented or treated/cured?)
- A question I have often asked myself, incidents significant to my son, were he inhaled meconium during his birth, and while pregnant before it was taken off the market I had painted beams with creosote. I theorize it could be environmental. Cannot be cured but an AS person can learn success strategies.

3.) Since your son has AS, how did you feel when you first found out and how did you? (How did you come to know to diagnose your son- signs or symptoms?)
-See above. How did I feel, I felt I did something wrong, I was devastated for him, I grieved but then educated myself and made sure he saw the best doctors in the state. I fought every administrator and teacher to make sure he was not judged or refused services.

3A.)How do you feel about your son having AS?
- It is who he is, I don’t feel anything, he is X (leaving out his name) not a Diagnosis – and quite incidentally he has been able to turn it into an asset.

4.) How has your life changed since you found out your son has AS?
-I am much more aware of student and people reactions to anything. I believe every one of us has some kind of disorder, none of us are perfect. We should focus on people’s strengths not their weaknesses.

5.) What was school like for your son? (this could be a long one here- the challenges/ the joys/ the things your son and even you faced with his AS)
- School was very social for him, however academics he struggled with. He was a slow processor and could not read as well as those in his class. Given instruction to do something would have to reintroduce to him by me at home. The school had said it did adversely affect his education which they could not have been more wrong. In the 7th grade when he was doing Connected Math (an algebra program back then) he would have a complete melt down because it was all word problems. We would spend 4-5 hours a night on homework. Until I finally demanded a 504 plan to limit the amount of homework he could get done at night and time restrictions for tests. Challenges were how to support someone who could not completely understand others and how they related to him. Joys were he found his way, he taught himself how to learn and with a great deal of help from me he finished school a semester early. When he went to college- Motorcycle Maintenance Institute he excelled graduated 3rd in his class, because it was all experiential education.

5A.) How did teachers work with your son or you?
- Very few worked well with him, as they perceived it was behavioral, they knew very little about AS and thought if he would just apply himself he would do better. There was only one teacher, his 5th grade teacher that actually ever worked to see him succeed and really understand regardless of what his IEP or PET said. The school was forced into a 504 plan by law, however they rarely honored it. In high school, he had a great English and Social Studies teacher that really understood him and Foster Tech Center he absolutely excelled (experiential learning and hands on).

-5B.) How can AS change skills/life in positive ways (positive attributes)
- There is completed sincerity, compassion and if taught early to be truthful, they are incredibly honest. The have a strong work ethic and once they learn something they own it. He would not be any other person and I would not change a thing about him.

6.) How has your son’s life changed since you and he found out about him having AS?
- He had to teach himself to learn which has served himself well. It was brutal for him in school, except for post secondary. He has never wanted to be labeled and only rarely shares with people he has AS. My life is one of a sounding board for him, a filter so that he can understand if something is confusing.