Autism is a pretty popular word around the world these days and I had begun to assume that everyone knows about autism and there isn’t any real need to explain it to people anymore. I mean, come on, the media talks about it all the time. You can find books about it; magazine articles are written about it; you can hear stories about autism on 20/20; etc., etc. However, assumptions aren’t always reality so I thought that since it is still April and Autism Awareness month, I’d take the opportunity to do some posts on Autism and how it has effected our family, specifically our son Ryan.
Here is a definition of autism per Mayo Clinic:
Autism is one of a group of serious developmental problems called autism
spectrum disorders (ASD) that appear in early childhood — usually before age 3.
Though symptoms and severity vary, all autism disorders affect a child’s ability
to communicate and interact with others.
The Autism Research Institute describes autism as a severe developmental disorder that begins at birth or within the first two-and-a-half years of life. Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors which are markedly different from those of typical children. Less severe cases may be diagnosed with Pervasive Developmental Disorder (PDD) or with Asperger’s Syndrome (these children typically have normal speech, but they have many “autistic” social and behavioral problems).
And the Autism Society describes autism this way.
Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.
All these definitions basically say the same thing – autism is a developmental disability that will typically appear sometimes during the fist 3 years of life. We first saw the signs of autism in our son Ryan around 18 months of age.
Children with autism appear to be perfectly normal. I must admit that an ongoing joke around our house has been to question what “normal” actually looks like. Still, the fact remains that Ryan did begin his life with normal development and what was considered to be “normal” development ceased to exist around 18 months of age. Still, Ryan has always looked like a “normal” child which was cause for many stares and looks of disgust as he displayed behaviors that weren’t “normal” to others.
Symptoms and severity may vary. Autism is a spectrum disorder – This was cause for incorrect evaluations when Ryan was very young. He’s 30 years old now and 28 years ago doctors didn’t necessarily understand autism. We had three different evaluations done on him and all three said the same thing, “mentally retarded with autistic-like behaviors.” The main reason for the incorrect diagnosis was the fact that Ryan enjoyed affection and wasn’t really bothered by change (although as he got older, change became more and more difficult for him). A child who pulled away from hugs and hated it when mom or dad moved the furniture around in a room was more easily diagnosed with autism in the 1980’s. The doctor’s failed to understand that autism is a spectrum disorder and put emphasis on certain aspects of the symptoms they felt were most characteristic of autism.
The problem with an incorrect diagnosis on evaluations is that the child won’t necessarily receive appropriate services, especially in education. This was a huge challenge for us and at one point in our lives we actually packed up and moved to a state that we knew would provide him with appropriate services and place him in a classroom that would address the autism part of the diagnosis.
Finally, at the age of six, Ryan was given a correct diagnosis of autism. However, it took 4 years and several doctors before we found one that actually knew what autism was. Things have changed a log in the last 28 years, but that is another post, for another time.