After seven years of largely fruitless efforts, autism awareness advocates have finally convinced the Georgia General Assembly to take a small step toward recognizing what Rep. Charlie Bethel, R-Dalton, has called “a public health crisis in all our communities.”
On Thursday, the last day of the legislative session, lawmakers passed House Bill 429, which mandates insurance coverage for autism treatment for children ages 6 and under with a $30,000 cap and limits on the size of businesses that would have to provide it.
While this signals some small progress in the fight against autism in younger children, legislators continue to ignore the larger issue of the long-term impact that older children and adults with autism are going to have on families, schools, social services and the taxpayers.
April is Autism Awareness Month, and as the parent of an adult child with autism, it is exceedingly frustrating to see the needs of young adults with this neurodevelopmental disorder continually ignored or pushed into the background by lawmakers, most of whom have little knowledge of the subject.
The Centers for Disease Control and Prevention estimated last year that autism affects 1 in 68 people nationally, most of them male; an increase of roughly 30 percent from just two years earlier. Although there have been some advances in early detection and treatment of autism, those who are diagnosed later in life are routinely ignored because there is a significant lack of research on their numbers. In addition, virtually no resources are available to help them become the productive citizens many are capable of being with the right training and guidance.
The subject of adults with autism is not discussed much, even among those who advocate for better understanding of the problem. There was scarcely a mention of adults with autism at a recent autism conference in Norcross. The conference dealt almost exclusively with younger children with autism and ways parents and educators can better assist them.
But autism does not magically disappear when a child turns 7, or 18, or 30.
Dr. Drew Rubin of Marietta, who specializes in treating children with neurodevelopmental disorders such as autism, said at an autism conference last year that there has been “A disproportionate increase among high-functioning persons (with autism, sometimes referred to as Asperger’s syndrome), especially young men,” but that “There is no standard of care for young adults with autism.”
That may explain why an estimated 84 percent of adults with autism still live with their parents, as does my soon-to-be 28-year-old stepson. He is considered high-functioning but does not have the social, economic, political or educational skills, much less the maturity needed to live on his own.
There are too few treatment programs to handle the increasing number of adults with autism. There is even less understanding among the public, including law enforcement officials, of how autistic behavior can manifest itself in adults.
See a scruffy guy walking through your neighborhood wearing a heavy jacket in the middle of summer? The first reaction among many people is to call law enforcement out of fear he might be dangerous, not understanding that there are sensory issues with people with autism and how the pressure of heavy clothing helps calm them.
See a guy pacing and talking to himself? That’s classic autistic behavior known as “stimming.” It is not unlike what so-called normal people (neurotypicals) do when they bite their nails, repeatedly tap their pen on the desk or twirl their hair in their fingers. It is simply repetitive, calming behavior.
People who are on the autism spectrum also often have difficulty communicating, making eye contact and picking up social cues. They tend to see the world in black and white, right and wrong. There usually are no shades of gray for those with autism.
Yet given understanding and proper training, people on the autism spectrum can become not only productive citizens, but can contribute in ways that are far beyond what neurotypicals can. Autism researchers believe Mozart would likely have been on the autism spectrum had they known it existed then. So too would Albert Einstein, Sir Isaac Newton, Alexander Graham Bell and Thomas Edison.
Other famous people currently on the autism spectrum include Bill Gates, actor and comedian Dan Aykroyd, actress Daryl Hannah, musician Peter Tork of The Monkees, singer Susan Boyle and comedian Michael Palin.
My stepson is great with animals; not so much with people. He has volunteered at a horse rescue farm, where he was able to handle the most skittish of horses, and at the Humane Society shelter, where he dealt lovingly with what were perceived to be dangerous dogs. He also has an aptitude for, and love of, auto mechanics and art.
But he has problems getting and keeping jobs because of his lack of social skills and his difficulty picking up social cues. State services dealing with these issues are almost impossible to obtain. It took my wife and me 10 years to get the state Vocational Rehab folks to just sit down and talk about getting some assistance for him.
Dr. Roy Q. Sanders, a Decatur psychiatrist with an autistic son, said when he lived in New York he could access $50,000-$60,000 a year in services from the state. When he moved to Georgia he was able to access virtually nothing.
As the number of children and adults with autism continues to grow, one of the great concerns of many parents is the increasing interactions they will have with law enforcement. Many of the behaviors exhibited by those on the autism spectrum such as poor eye contact, slowness in answering questions, even simply requesting a lawyer, are seen by law enforcement and others as signs of guilt or evasiveness.
Dennis Debbaubt, a private investigator in Florida who has an adult son with autism, writes in his book “Autism, Advocates, and Law Enforcement Professionals” that “Responding to predictable law enforcement and criminal justice situations involving children and adults with autism will become increasingly more common and will require better training for law enforcers.”
Yet that type of training is woefully lacking, especially in Georgia. Even those police officers who have some knowledge of autism often refer to it as a “disease,” as if it is contagious or there is some cure for it. Without better training, and without that understanding of the difference between a person with autism and an actual criminal, the justice system could easily become over-burdened with cases involving innocent autistic people being charged with crimes they did not commit simply because they are perceived to be acting guilty.
One study has already shown that prisons contain an alarming percentage of people with autism, which raises the question of whether they are actually guilty or simply have been perceived as guilty because they are “different” or gave a false confession from a desire to please, another trait of autism.
That study, published in a 2012 issue of the Open Access Journal of Forensic Psychology, estimated that the rate of autism among the general population is just less than 1 percent; among prison inmates it is 4.4 percent.
The study also found that “Due to a lack of knowledge on the part of an attorney, judge or jury, an offender diagnosed with an ASD (Autism Spectrum Disorder) may be viewed more as a cold, remorseless recidivist, rather than a person with a mental-health diagnosis or neurobiological deficit.”
The authors of the study warned that “The rapidly increasing prevalence rates of ASD may be foreshadowing a looming issue for forensic psychologists and the criminal justice system in general.”
Georgia legislators take note: Your unwillingness to address autism in any meaningful way is very likely to come back to haunt the state in the not-too-distant future in any number of ways.
Ron Martz is a former journalist and educator and a Northeast Georgia resident. His commentaries will appear frequently on Viewpoint. He can be reached at firstname.lastname@example.org.