Misdiagnosed?/Second Opinion

by Deirdre
(Oakland, Ca. U.S.)

Hi, In May 2008,I posted a concern I had about my six year old son who I believe has SPD. When I was filling out the checklist for him, I saw alot of myself when I was younger and even now as an adult. So, I filled out the Adult Checklist. The majority of my answers were 5's. I've struggled with Panic Attacks/Phobias (Agoraphobia is one of them) off and on since I was 21 years old. There was a period of time where I did get better, but almost ten years to the date that I first started having panic attacks, they started again, and so did the Agoraphobia.

I've seen different therapist, but haven't had any success with them. I've always been described as shy, scary, introverted and anti-social, even by family members. For as long as I can remember, I've always struggled in school both academically and socially. As a child, I felt like I couldn't identify with other children. I always had this feeling of being behind everyone else. I didn't like doing the things other children did, and I didn't understand why. Going to the park was one of them. Everything that moved made me sick, swinging, merry-go-rounds, rolling down a hill just wasn't fun for me. I had a hard time riding in cars and on buses. I had problems crossing streets.

I remember (I was about seven or eight years old)trying to cross this busy street, and although there was a traffic light, I just couldn't get across. Finally someone noticed me standing there crying and pulled over and helped me across. Everything was just moving too fast for me, and even with the light changing, I just couldn't focus. I prefer wearing clothing that I can't feel things that don't squeeze me. My sister is always trying to get me to wear jeans, but I like wearing stretch pants, because they are not heavy. People have always complained about how when they hug me, I never hug back, or how stiff I am. Noise has been an on going problem for me when I was younger, and even now. Motor cycles, fire trucks, ambulances, police cars and any other loud sound I react as if it's the first time I'm hearing them.

I don't scream and cry like my son, but I'm jumpy and irritated and can't wait until the sensation passes. I've always associated my behavior with what I've been hearing all my life, that I was just this scary, introverted, shy, anti-social person. I'm wondering now, if I could have been misdiagnosed, and if the phobias I'm dealing with could be related to SPD.

As far as my son is concerned, I still haven't found an OT yet. He was evaluated at Children's Hospital here in Oakland, because I had some concerns about Autism or Autism Spectrum Disorders. Once again they told me that he is too socialable to be Autistic which is what every one tells me when I mention Autism. When I mentioned SPD, no one wanted to talk about it. I felt like the more information I was sharing with them, the more they ignored me. When I got the evaluation report back, they diagnosed my son with Anxiety Disorder.

I truly believe he got this diagnosis based on the fact that I have problems with anxiety. I talked with his Primary Care doctor and told her I wanted a second opinion and asked for a referral. She did not want to give me a referral, but after going back and forth with her, she finally gave in. My son has an appointment in October at Stanford. When I called Stanford to make the appointment, they did not want to give him a full evaluation. They told me it would take a really long time for him to be seen and that since he had already been seen at Children's Hospital, he didn't need the full evaluation. I explained to them that the reason I requested a second opinion was because I didn't agree with the diagnosis that Children's Hospital gave me, and I don't mind waiting. After going back and forth with them also, they gave me an appointment. Because Stanford didn't want to do a full evaluation,( because he was seen at Children's), I feel like they may also give him a diagnosis of Anxiety Disorder, and who's going to question "Stanford".