The autism myth
What is autism? Nobody really knows. The diagnosis is at once a tragic reality and a myth. I have lived with an autistic person for two decades now and I don’t know what it is. It is not a medical condition or a disease, yet some medical experts say raising an autistic child is equivalent to the stress experienced by combat soldiers and comparable to parenting 10 neurotypical children. Though autistic people are often placed on medications and undergo various therapies, there is no treatment and there is no cure.
Autism is diagnosed through stereotypical symptoms and behaviors. Many people believe autism to be a “Spectrum,” and it is. However, it is non-linear, subject to change at any time and under any circumstances, and reflects each individual’s unique set of symptoms and manifestations. As the saying goes, if you’ve met one autistic person, you’ve met one autistic person.
In Harrison’s case this could not be more true.
During the high school years Mary enrolled our family in a genetic study being conducted by Spark for Autism. The organization is collecting DNA samples from families of children on the spectrum with the goal of better understanding autism and its causes. As parents of an autistic child, I think there’s always a tendency to seek out an explanation for why your child is autistic. We want to have some reason for it.
I always thought Harrison’s autism must have to do with some strange combination of genetics and environmental toxins like glyphosate or mercury, perhaps vaccines, or my being an older father, or other factors we have been conditioned to associate with autism.
Spark sent us sample-collection kits and we all spit into the vials and mailed them off. We really didn’t hear much back from Spark for the next couple years, though we received a regular email newsletter. From time to time we wondered whatever became of the study, then we forgot about it.
So it seemed random when one day we got an email saying the research had uncovered a specific genetic cause for Harrison’s autism, and inviting us to a genetic counseling session online. Mary quickly signed us up. There were a tense few moments as we waited to see just whose side of the family was responsible. As it turned out, it was neither.
In this conference call we learned that Harrison has a “de novo” genetic change in a newly discovered autism gene called ANK2. This genetic change is very rare. The Spark study tested more than 26,000 families of autistic children. It was mind-boggling that fewer than 10 individuals of those autistic people tested were found to have the ANK2 genetic change.
It appears this random change can happen early after conception during the gene-copying phase of development. Neither the parent’s genes nor environmental factors are to blame.
This makes Harrison very unique and the gene is present in every cell of his body. While ANK2 has been associated with cardiac issues in some individuals, this is clearly not the case with Harrison. While Harrison didn’t inherit ANK2, if he were to father a child, there is a 50-50 chance he would pass on the gene.
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