As we finish Autism Awareness Month (but not Autism Awareness), I asked my good friend Cheryl to share her thoughts on autism over the years. She has reared two boys on the spectrum, and was in the world of autism before that. She has seen lots of changes, and I thought it would be good for those of us who are still relatively new to autism to see what has happened since the ’70s. This is also a quick “primer” for readers unfamiliar with autism.
My journey with autism began in 1976. No, I wasn’t a parent yet, but a high school student faced with writing a paper about a life issue that created challenges for a family. I needed to write the paper for Family Living class, but thought I could pull off a double paper by also reading a book for English class. I did. I read the newly published book about unlocking autism, Sonrise. I was hooked.
I took my autism research to the local university where I was planning to attend college and interviewed the head of the education department. I made an amazing discovery; the state of Mississippi had one autistic student. I called his mother for an interview. BAM! I was finding my calling in life, to become an expert in autism.
My own mom was a public school preschool teacher, and she had suggested I research autism. Autism, my mother had been taught, was very, very rare. In fact in her required special education training class in the early 1960’s, her professor wrote the word autism on the black board. He told his class a definition of autism and then said, “If you ever get to see a child with autism first hand, don’t pass it up, it’s a once in a life time chance.”
Today my mom meets with other grandmothers of autistic children in a local support group. How, you ask, did we go from obscurity to autism being a popular character representation on sitcom television shows? How did autism become epidemic? Did we suddenly understand and see these children? Did they come out of hiding? No, autism was once obscure, but today is common place.
If you research anything about autism, you quickly find the “Father of autism” research was a man named Bernard Rimland. Dr. Rimland, was a young psychologist when his son Mark was born in 1956 and was different from other children. Despite his education in special needs and psychology Bernie, as he was known, did not know about autism, nor had he heard the word when his son received the diagnosis.
This driven father founded the Autism Research Institute, and devoted his life to unlocking autism. He saw autism go from a word he did not know, to a common childhood disorder before he died in 2006. Many parents, including myself, had the chance to talk to him and work with him. He was saddened by the run away rates of autism and the generation of children who would need life time care. He was also deeply encouraged by the discovery of recovery via biomed and learning programs and worked to help promote these therapies and ideas.
In my life time, I too have seen autism go from obscure books on the back of library shelves to raising two spectrum sons of my own. So what is behind the rise of autism? And what, exactly, is autism anyway?
Autism cannot be diagnosed with a blood test or DNA test. It is simply a list of symptoms that must be observed in a patient. Difficultly in correct diagnosis become an issue when you realize that the symptoms range from mild to extreme, and not all children have all issues.
Autism is sometimes called PPD or PDD-NOS, making parents think it’s a milder form or not autism at all. This is quite misleading, and may allow parents the peace that they don’t have an autistic child when they do. In all reality PDD-NOS and other terms grew out of the insurance need for coding for a group of childhood issues not covered by the insurance industry in the late 1980’s. No matter what you call it, it is still autism, and even if mild can be treated with the same therapy programs as the more extreme autism cases. The confusion of terms has lead to a misleading of parents and made getting schools to provide services even harder.
Aspergers, is also on the rise. Yes, I know there have always been individuals with Aspergers, but it is no longer rare. When I meet parents with an aspie child, I ask them if the child reminds them of a relative. If they laugh and say, “Yes,” I say, “I understand. It happened in my family as well.”
But more often than not, I hear, “No, I have never seen anything like this, and either have my in laws.” Aspergers is a form of autism that effects social interaction in individuals who usually have advanced speech and are or appear extremely bright and gifted. While it was linked under the autism umbrella in the last 20 years it is not the cause for the rising rates as some would have you believe. Aspergers is in its own class, yet does share many of the same issues as classic autism. Due to the inability to interact in a normal social means, the two are intertwined and linked under the same disability.
Both autism and Aspergers means an individual has a neurological issue that affects the brain’s ability to properly process input.
An individual with autism may miss social cues as they cannot read body language, facial expressions, voice tone, and other non-verbal cues. Most children learn these by osmosis; they simply pick it up from birth forward. The individual with autism may see you frown, but the frown does not process in the brain that you are upset with a situation. This lack of understanding can happen to the most closed off, non-verbal child as to the bright, fast-talking child who is telling you how many nations have kings. This shows the common link between an extreme child and a mild more aspie-end child.
Children may also have great issues with other sensory imput. Light, sound, and touch are all confused and may cause pain or be ignored by the individual with autism. When the brain cannot make sense of the information going in, the actions of an individual will reflect this, thus the symptoms of autism are seen and diagnosed. Knowing this one fact, that actions show autism, tells us individuals with autism could not have been ignored or missed in past years.
Why the rise?
So, have you seen any of these things, too? Come back tomorrow to read the end of Cheryl’s thoughts!