“My son was diagnosed with Autism?” –Me.
“Oh, so where is he on the spectrum?” –Random people who either don’t know much about Autism, or didn’t ask their child’s doctors about ‘The Spectrum.’
This is one of the most frequent responses I face when I mention Monkey’s diagnosis and I have an answer. ‘The Spectrum’ doesn’t exist. At least not yet anyway. When I asked my child’s doctor about where my son was on this mysterious spectrum, he politely explained to me that in the medical community “Autism Spectrum Disorder” will not be recognized for probably another year or two. However, many websites about Autism lightly use the term “Autism Spectrum Disorder (ASD).” ASD actually refers to a few different disorders. Many people, myself included, assume that since the word Spectrum is used that ASD works like scale. For instance, the answer to where your child is on the spectrum would be low for one type of Autism and high for another type. Asperger’s further complicates things because it is often referred to as “High Functioning Autism.” However, medically speaking, Asperger’s is a separate disorder.
The types of ASD are Autistic Disorder (Classic Autism), Asperger’s Syndrome (High Functioning Autism), Pervasive Development Disorder Not Otherwise Specified (PDD-NOS or Atypical Autism), and Pervasive Development Disorder (PDD which includes Child Disintegrative Disorder [when a child looses skills they once had] and Rett Syndrome [which only occurs in females]). (From http://www.nichd.nih.gov/health/topics/asd.cfm). I have yet to find the website that describes ASD in terms of a numeric scale and it seems that the high and low are Asperger’s and Autistic Disorder. Therefore, I find the question about where my son is on ‘The Spectrum’ to be really unfair. I always wonder if I should say, “Oh, he’s really high on the spectrum, or really low.” I don’t see my son as either high or low since my son does not have Asperger’s, but functions better than other people who have Autism. There is a quote you’ve probably heard, “If you know one person with Autism, then you know one person with Autism.”
My son’s doctor simply told me that ASD simply doesn’t exist yet and that if my son was diagnosed with Autism, then he would just be diagnosed with Autism. Not ASD. And even when ASD does become medically recognized, nothing for my son will really change because ASD refers to a few separate disorders. So, when you are asked, “Where is your child on ‘The Spectrum?’ I suggest simply explaining that your child has a specific disorder, which is part of the spectrum, but that your child is neither high, nor low because we (at least in the US) thrive on equality and one child is not better than any other child. You’re child may have special abilities and that is wonderful or they may seem to have no special abilities at all, but the point is that they are our children and that makes them just as special as any other child. This is why the term ASD bothers me so much. Does it bother other parents? Medical professionals? How do you respond to this question? Were you taken back by it at first? What’s your story?