An except from Twirling Naked in the Streets and No-One Noticed…
In 1974, 1 in 5,000 children were diagnosed with autism. When I began writing this book in 2012, that number was estimated at 1 in 88. In early 2013, the Center for Disease Control (CDC) released yet another statistic; 1 in 55 children are now diagnosed and identified as being on the autism spectrum. What has changed? Are there more autistic children being born now than ever before? Is there an epidemic?
I believe the reason for the rising autism rates is two-fold. First, physicians are trained more thoroughly and recognize the symptoms that were once lost on many of us as children, and secondly, the diagnostic criterion has changed drastically over the years. The new diagnostic criterion allows doctors to recognize more children, and adults, on the spectrum. The more that is learned about autism, the more these parameters have and will continue to be changed.
The idea that only 1 in 5,000 children had autism in 1974 I believe is a gross underestimation. The fact is that autistic children were indeed in your midst then; however, doctors, teachers, and parents alike did not recognize the autism. When I was growing up autism was narrowly defined. In order to be diagnosed with autism you had to be unable to speak, and have a lower than average I.Q. Today, we know this to be false.
In fact, those on the higher functioning side of the spectrum, those with Asperger’s Syndrome not only can speak but often could speak very early, and profoundly. To complicate matters further these same children were labeled gifted, spoiled, too smart for their own good, and the list goes on. Many children with Asperger’s Syndrome not only have average I.Q.’s but many have I.Q’s that are well above average. What happened to all these children who were intelligent, verbal, but still struggled because they indeed were autistic? They became adults.
In 1994, Asperger’s Syndrome (AS) was added to the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV), and recognized as part of the autism spectrum. Although, autism is a neurological disorder, it continues to be classified in DSM’s. According to the DSM-IV, in order to be diagnosed with AS a child or adult must display “qualitative impairment in social interaction, as manifested by at least two of the following:
1. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
2. Failure to develop peer relationships appropriate to developmental level
3. A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, or
4. A lack of social or emotional reciprocity
In addition the individual must display one of the following restrictive repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. An encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in either intensity or focus.
2. An apparently inflexible adherence to specific, nonfunctional routines or rituals.
3. Stereotyped and repetitive motor mannerisms, such as hand or finger tapping, twisting, or whole-body movements.
4. Persistent preoccupation with parts of objects.”
A diagnosis of Asperger’s Syndrome also requires that these disturbances impair social, occupation or other areas of functioning. There can be no language delay, and no delay in cognitive development. In other words, AS was now being recognized as a part of the autism spectrum. Prior to 1994, these children and adults went undiagnosed—they were missed.
I was one of those missed children, and became one of the missed adults; this is my story.
NOTICE: THE DIAGNOSTIC CRITERIA IS CHANGING AS OF MAY 2013. I WROTE ABOUT THE NEW CHANGES TAKING PLACE IN THE UPDATED DSM (DSM –V) HERE.