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".



































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Aug 23, 2008
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Recognizing SPD as an adult
by: Anonymous

When my son was diagnosed, I noticed that many of the things on the checklist pertained to the behavior of my sister growing up. She is almost 40 now, but as a child she couldn't stand to have her hair washed and she would scream and cry. I also remember her complaining about her clothing being scratchy. Now she cuts all tags from the clothes and wears them inside-out for comfort. We didn't know what it was then, but now my son has different manifestations of SPD. He day dreams and gets engrossed in activities and tunes out everything else. He is under-responsive and his issues didn't become apparent until he became of school age. He was an easy baby with speech issues, but a very easy going child. Now we know that is classic under-responsive SPD. Hang in there and I hope that there are some professionals in your area that can recognize this. Good Luck.

Aug 19, 2008
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I had some of the same problems.
by: Anonymous

My nine year old daughter was just diagnosed with autistic disorder (high functioning), post simple complex seizure disorder, memory disorder, coordination disorder, mixed receptive-expressive language delay, sensory integration disorder, etc.

It took nine years to get all of these diagnosis. Although she was diagnosed with the speech problems since pre-school. I always noticed something was not quite right. My doctors her whole life told me she would grow out of all of her symptoms, but she never did. It seemed like it was getting worse. So I demanded from my doctor for her to be seen by an developmental pediatrician or I would take her to a different doctor until she was sent. Then I begged the developmental pediatrician to see an neurologist. Which she ended up with an MRI and an EEG. Turns out both were abnormal. My daughters neurologist diagnosed her with the complex partial seizure disorder. She then sent us to the autism team network where we live. They do a lot of autism research.

My daughter also has a lot of anxiety issues. This is a symptom of autism. These kids will focus on certain things that bother them. Kind of like tunnel vision.

For instance, my daughter is anxious over dying. She thinks about it a lot, Talks about it a lot, Fears dying.

You really have to get tough with these doctors and demanding. It took me nine years to get her seen by a developmental pediatrician. I went through three doctors. If your son was seen by a developmental pediatrician ask if he could be seen by a pediatric neurologist.

You have every right to question your sons diagnosis. No one knows him better than you.

Aug 19, 2008
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Don't give up
by: Marcie

If you are not satisfied with the evaluation or are still not happy with the diagnosis then keep asking for opinions. It makes me angry to think that we are given such a hard time when all we want is what is best for our children. If the diagnosis was cancer and we wanted a 2nd opinion that it wouldn't be a hassle. I live in Canada so our health care system is different but I got a 3rd and 4th opinion as well. I have a diagnosis from a Developmental Pediatrician, 2 from Child Psychologists (1 private and 1 through the school) and then also a diagnosis from a Child Psychiatrist. It took me a long time to get them and I was on waiting lists for up to a years but I feel confident in the diagnosis and with the strategies, therapy and goals that we have in place for my son.
Good luck with everything and don't give up!!

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