Now, in 2013 we realize that autism presents with many different conditions and that it ranges from mild to profound. It is now considered a spectrum disorder because of this reason. In 1975, the incidence for autism was 1 out of every 5,000 children. Now the incidence is 1 out of every 50 children. I in no way am suggesting that the incidence of autism is not rising at alarming rates because it is. I personally believe that when we finally discover the cause of autism we will find that there is no one cause. Just as some children are susceptible to allergies or other conditions I think some children are obviously wired from the onset to be on the spectrum. To determine why this is ture is what is driving the research.
We didn't recognize Asperger's Syndrome until
1994 although the disorder was discovered by Hans Asperger in the 1940's, the classical autistic symptoms--low capacity for communication and social interaction, restricted and repetitious stereotyped behavior. Asperger's is usually different in that it is a less disabling form than the symptoms found in infantile autism. Asperger's Syndrome was added to the American Psychiatric Association's official diagnostic manual in 1994. It's sometimes distinguished from a special category of "high-functioning" autism, chiefly on the grounds that it implies better verbal than non-verbal intelligence. Even though Asperger's was considered to be a form of autism, these children's symptoms were night and day different than the children considered to have infantile autism (like Lynda).
May, 2013 the diagnosis of Asperger's Syndrome was eliminated in the DSM-5 published by the American Psychaiatirc Association and is the primary manual for a formal diagnosis of autism and related disorders. Now Asperger's Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) has been replaced by one umbrella term of "Autism Spectrum Disorder" and then further distinctions will be made about the severity levels (level one, level two or level three).
Is this all a little confusing to you while reading about the changes over the years in the diagnosis of autism? The classification of children with autism or Asperger's. You can see how the prevalence depends on what criteria we are using to define autism. In addition, these variations throughout the years from 1975 to 2013 have caused families of these children to have to advocate for everything from being included in special education to being treated through the medical system with insurance coverage.
I believe that over the last four to five decades, we have environmentally changed our DNA. Research has shown us that many of the pesticides used in earlier years have been linked to the increase in the incidence of ADHD. Can you just imagine how many substances we have introduced into our atmosphere, water supplies and foods (to name just a few) that could easily damage the delicate DNA of a developing human. Research is definitely needed to determine what causes some children to be mildly affected by autism and others to be so severely involved that they require 24/7 care.
I remember in the early 70's attending a state convention of the ARC (then known as the Association for Retarded Citizens) and meeting family after family with children with Down Syndrome. The alarming fact was that most of these babies were being born to young mothers not the mothers over 40 that had been the norm. I have never forgotten how that information stunned me and frightened me at the implications. It wasn't because younger parents were parenting children with Down Syndrome but rather what had happened to our DNA in previous years to bring about this huge change. I feel the same way about eliminating children with Down Syndrome through science as I do those with autism. Statistics show that 90% of babies with Down Syndrome are aborted in the United States.
Obviously, I love kids with autism just as they are otherwise I wouldn't have adopted a child with autism and spent my life working with children with autism. I believe to completely eliminate autism from our world would be a tragic mistake because many of our scientists, inventors and master artists have obviously been on the autism spectrum. We need people who think outside the box. We need people who are on the autism spectrum. There are many ways science can improve on the quality of life for these children and adults by better understanding the medical issues that often accompany autism (seizures, intestinal tract issues, inability to sleep). I cringe when someone talks about searching for a cure for autism. I know even that statement means many different things to many different people.
It is such a slippery slope when we as a society begin to define what is typical behavior and who is "normal". When we are able to turn off or turn on all of the genes that lead to any condition that might be offensive or considered less desirable than the defined "normal"....what a boring world of humans we will have created. I wouldn't have changed a thing about Lynda before her stroke at age ten except to have been able to have controlled or eliminated her seizures, her severe intestinal problems and other medical issues that compromised her life and caused great pain.
Lynda was a delightful little girl with all of her autistic quirks. I believe that had she developed beyond ten years old without having been abused and suffered a massive stroke, her seizures would have been better controlled with the newer medications as would her extreme hyperactivity. Because she was already speaking some words, research shows us now that with time she would have most likely added to her vocabulary, especially with more and more emphasis on autism in later years.
Lynda was an enigma. She was definitely the child I wanted. She certainly presented us with challenges.
In many ways we know a great deal more about autism today in 2013 than we did in 1975 when Lynda came into my life and PL-94-142 was first enacted to her and others like her a right to a public education. The law has been revised and renewed over the years but one thing remains the same. It was never written to be easily interpreted and enforced and it has never been fully funded. Parents still have to advocate for services for their children and those in Mississippi are not able to receive Applied Behavior Analysis (ABA) the only research based method of teaching young children with autism unless parents pay for the services themselves which can be extremely costly. Other surrounding states and most of the nation provide ABA therapy through insurance and medicaid waivers. While early intervention can change the course of the life of a child with autism it is sometimes more frustrating to parents today to know what will help their child become independent but not be able to afford the therapy due to politics.
If you live in Mississippi or a state that doesn't provide ABA therapy to children with autism, Down Syndrome or other developmental delays please let your legislators know that it is necessary and a cost effective way to reduce the amount of money that will be spent over the lifetime of an individual by providing early intervention now rather than institutionalization down the road. It is almost criminal in my mind to know ways to help children learn that will enable them to be included in regular education classes but not provide that service for children in the early, critical years of development (birth to age 7).
Children with autism will always have characteristics of autism and that's great in my opinion. However the opportunities that being able to communicate and have social skills necessary to navigate our world can make a huge difference in the quality of life for children with such developmental delays.
Since 1975 have we changed that much in the field of providing services for children with special needs? In 2013, I sometimes wonder when I see parents of these children still struggling with many of the same issues we wrestled with almost 40 years ago. I will never give up though. Children with special needs were designed and made by the same God that made all of the rest of us. As Temple Grandin says "Different but not less".
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