April is Autism Awareness Month, with its “Light It Up Blue” campaign. But I don’t want it to get lost amongst the myriad “month” designations. Campaign participants are wearing a ribbon with the traditional puzzle pattern on it, which is appropriate since the etiology of the autism spectrum is still a mystery after all these years.
It’s called a spectrum because the most common symptoms—lack of eye contact, obsessive-compulsive behavior, lack of social interaction, deficiencies or aberrations in verbal communication, and hyperkinetic movement—can be present or absent as well as mild, moderate, or severe. No 2 people on the spectrum are the same.
It was in 1943 that child psychologist Dr. Leo Kanner first described autistic type behavior. Shortly after, in 1944, Dr. Hans Asperger described a mild form of autism that now carries his name. Time passed without much significant understanding of autism
The picture worsened in 1967 when Dr. Bruno Bettelheim of the University of Chicago mistakenly theorized that the reason for autistic behavior in children was “refrigerator moms” who did not properly bond with their babies. Current research suggests that autism has a variety of genetic, epigenetic, and brain development causes influenced by environmental factors.
The prevalence and incidence statistics reported by the Centers for Disease Control and Prevention, the Autism Society, and Autism Speaks are not encouraging. In 2000, one in 150 children were diagnosed with autism. By 2016, the prevalence had zoomed to one in 68. Do the statistics reflect a real increase? Are they indicative of improved diagnostics, as autism now can be diagnosed in children as young as 2 years old? Or are we looking at over-reaching diagnosis?
Interestingly, as dentists, we are in a particularly advantageous position to observe the presence or absence of autism spectrum disorder because we need the eye contact, the social interaction, and the communication so essential to developing a relationship with our patients. To this point I can tell you firsthand that in a practice with 3 pediatric dentists with a cumulative 100 years of experience that the long and emotional conversations with the parents of these patients can be gut-wrenching.
Let me share a new wrinkle in the world of autism with you. There is a sizeable segment of parents of autistic children and autistic adults who focus on what they term neurodiversity. Their feeling is that we have to look at the autistic mind as just another kind of “normal,” another way that the human brain can work, not something that needs fixing.
Several years ago, I had the pleasure of meeting Temple Grandin, perhaps the most famous autistic adult. She made it clear that her brain did not work well with ordinary math and English, subjects in school with which she struggled, but was extremely suited to visual stimulation. So, she was able to use her visual skills to forge a career in Colorado, designing cattle slaughterhouse equipment and facilities.
In his book Far from the Tree, Andrew Solomon focuses on discussions with parents of children who are, for example, blind or deaf or dwarfed and whether they were determined to correct what was “wrong” with their children or if they would they just nurture and encourage them to lead their lives as they are. For instance, if you had a child who was deaf, would you want that child to have a cochlear implant that would allow some limited hearing, or would you encourage the child to perfect signing and lip reading skills? Is there even such a thing as “the other normal”? And, of course, what is “normal”?
Derek Volk is the author of Chasing the Rabbit, the story of his struggle to raise his son, Dylan, diagnosed with Asperger’s syndrome. I heard them speak at a book signing event, and the first thing that Dylan said was “Don’t tell me I’m normal. I am not normal. I can do a lot of normal activities but I have limitations. Growing up I wished I could have had friends and relationships, but I was ‘different’ or perhaps a little ‘quirky.’”
So now, even within the autism community, multiple perspectives abound. On one hand, if you have a medium- to low-functioning child with autism, you may hope and pray and even work toward finding a cure. If, on the other hand, you have a high-functioning child with autism who perhaps is good with numbers or musically talented or artistically gifted, but is a “little different,” you might enthusiastically embrace the child’s talents and “differences.”
As a disclaimer, we do not have an autistic child in our family, so I wouldn’t presume to speak for those parents one way or the other. But as a pediatric dentist who has worked with so many families, and as the father of children and grandchildren who have been very active in working on various levels with special needs children and their families (from student mentoring to legal representation), parents should always strive to give their children the brightest future from the point of view of happiness and independence.
On a side note, what better way to bring to life the importance of recognizing the nature and character of autism spectrum disorder than through Julia, a new red-haired Muppet on Sesame Street who is autistic? The character will be officially introduced today, on April 10, and the producers of the show are hoping to dispel certain myths and misconceptions about what it means to be on the autism spectrum. Julia apparently will be a little wary of Big Bird but will immediately identify with Elmo. It should be interesting to watch Julia’s authentic development on the show since the puppeteer who inhabits and voices Julia is the mother of an autistic child. Go Julia!
Finally, as a member of our wonderful profession, I would encourage my colleagues to make themselves and their office teams aware of the people who dwell in the world of autism and understand their differences, so we can provide competent treatment and establish meaningful relationships when they are in need of our services.
Also By Dr. Berman