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When My Son Was Misdiagnosed With Autism

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I hope this story will be helpful to those of us that have loved ones diagnosed with autism. To start, I don’t want to diminish the impact autism has on families, and I would like to clarify that what happened with my story may not apply to all. However, it might be worth considering depending on your situation.

My son was diagnosed with autism when he was about 3 years old. Prior to his diagnosis he showed what may be referred to as classic symptoms: lining up his toys in a line, not pointing at anything, delayed speaking and social skills etc.

Our son started throwing up his food, especially anything with milk products. We did not notice at the time that he was forming dark circles under his eyes. His skin also became rough to the touch. He started to lose weight and we were very concerned. At that age and with his behavioral challenges, we had no way to communicate with him to ask him if his tummy hurt or anything else.

Our pediatrician was concerned and booked us for testing. The testing was entirely behavioral and done by social workers and psychologists; no blood tests or scans of any kind were performed. The psychologists sat my wife and I down after the testing and described my son’s diagnosis in ignorant, bleak terms. They said said our son had severe autism, will “never know love,” will “never be able to distinguish family from strangers,” will “never talk like a healthy person,” will “never make friends” and would spend his life after childhood in a group home.

Sometimes people talk about how they will deal with situations, but we were not prepared for dealing with the real thing. My wife and I recovered a little, and for some reason I asked the medical professionals how their office budget is funded. I found out they get paid by the file. I am getting more cynical through life experience and could not get this factoid out of my mind.

My wife and I decided not to accept the diagnosis without doing further research into it. If nothing else, educating ourselves on autism would be a useful task. Meanwhile, our goddaughter was also diagnosed with autism among other things, and her parents were doing the same soul-searching. We shared information we thought would be useful to us. On something as serious as this, why not go for a second opinion.

After a time, we came across information that indicated there are cases where autism can be misdiagnosed. Of course, we did not know at the time if this was the situation with our son, but the initial treatment protocol was not harmful and what would we have to lose?

Our first step for our son’s treatment was to get several blood tests performed to determine the presence of allergies. This was followed up by a brain scan which focused on swelling of blood vessels to different parts of the brain, additional bloodwork and then a lengthy meeting with a pediatrician. We were told our son had some serious allergies as well as an autoimmune issue that has signs and symptoms in common with autism, but is both treatable and curable.

Our second step was to fire our former pediatrician and search for another in our jurisdiction that would be open-minded and assist us as our new treatment protocol was being administered by a pediatrician in another country. We the head of pediatrics at the children’s hospital in our city. We were initially hopeful, but found out that there is a common belief in pediatrics that the doctor is never wrong and they are not open to alternative ways of thinking about autism. His conclusion was that our kid has severe autism and “deal with it.”

Luckily for us, our general practitioner was open to assisting us with transcribing the treatment protocols in our country so our health insurance could help us along. We also moved to another jurisdiction where it has been much easier to support our son. We have been following a treatment protocol since then and the results have been amazing.

In a year and a half at his school, our son has never been referred to as autistic. Rather, he is an individual with some challenges. He is behind others in his class, but he is not falling further behind.  Our son is doing well in Grade 1 with other kids his age, loves his parents and his sister, likes sports, is learning to read and write, has friends, loves to sing and is well along to getting to be a healthy child.

Getty image by Vasyl Dolmatov.

Originally published: May 27, 2019
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