Path to Diagnosis

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Hello. I want to go to medical school, and I will probably become a child neurologist specializing in neurodevelopmental disorders. I just wanted to ask, how did things go in getting your child diagnosed? Did your child's pediatrician suggest it, or did you go on your own? How long did it take? What type of doctor(s) did your child see? Do you wish you had done anything differently in persuing a diagonsis? I wanted to ask so that, in the future, I can help my patients and their parents have the easiest route possible.

Thank you very much for your replies and time.

Sorry I can't help but I didn't want you to feel ignored. We've gotten away so far with just a tentative diagnosis from the school, and have been able to access the services our child's needs with that. We did get a neurophysiologist referral from the pediatrician, but haven't followed through, because there doesn't seem to be a solid point to it at this time.

Well, I do have one point to make: learn to stop talking about "disorders." Embrace, instead, the concept of neurological differences and allow that to replace the more negative, medical terms you will be learning.

Thanks! Yeah, as an autistic person myself I hate how dehumanized autistic people are by media, doctors, and so many other venues. The medical community is too obsessed with diagnosing people under labels rather than trying to help them as whole people. I'll do my best to try to help people as people. They don't realize yet that neurological differences means that it's a different way of percieving the world--and no one should want to change that, you know?

I can answer your question from our experience. I had suspected something was different about my son from the time he was a toddler but I couldn't ever quite put my finger on it. I had mentioned things on and off to his first pediatrician, but was assured that he was developing normally and not to worry about it. Then he started school, and I started noticing more and more things - lack of attention, a frustration with basic instructions, a little bit of what I thought was hyperactivity, and his social skills just seemed different. So then I started paying much closer attention and developed an entire list (it could practically be a thesis at this point...) of behaviors that my son displayed that seemed to be much different than other kids. I took that to his new pediatrician, and she took one look at it and said that she felt he needed to be evaluated. I took him to a neurologist who specializes in neurodevelopment through UCI (I live in California), and she diagnosed him with High Functioning Autism. He is somewhat between the fine line of Asperger Syndrome and HFA, but I do know he's very high functioning.

From there, I'm going to be honest - we haven't really known what to do. I've read a lot of books about HFA and AS, and at the time - he was doing OK in school, so we didn't feel that it was completely necessary to go for an IEP through the school district. That has since changed, and we're currently seeking an IEP. I just wish there was some sort of central place that parents could go to in order to be told how to seek services if they are needed. There's so much information out there and it's been very easy to feel completely overwhelmed and not know what to do next.

My son's teachers and I started noticing issues when he was in kindergarten. They suggested I have him evaluated. I first took him to a developmental pediatrician. He was diagnosed with DCD and GAD. He then suggested I take him to psychologist for further testing. He was given an additional diagnosis of ADHD and NVLD. Problems continued in school and his developmental pediatrician suggested I took him to the Autism Center to have him tested for AS. He was diagnosed with AS at age 8. So basically 3 years of testing on and off. He went from having a 504 to an IEP because he was really struggling. He was seeing a psychologist on a regular basis and also had some occupational and speech/language therapy. I have no regrets about how I went about things. I still fight on his behalf every single day.