At 2, my son was silent. When I took him to the doctor, the pediatrician blamed me because he wasn’t talking. Luckily, I had the internet.
The diagnosis of autism has come a long way
It is no longer an obscure diagnosis reserved for those with intellectual disabilities. Because ASD now recognizes the impact of social impairment, more people are eligible for help. And because parents have taken the lead in increasing awareness, more people are willing to help. Holes are being filled, and gaps are being closed by parents and professionals ready to change the world so that our special children can live in it.
What still hasnt changed, from 30 years ago to today, is reaction to the diagnosis: Devastation.
But these families also have another thing in common: Hope for happy lives ahead for their children.
More than a dozen years ago, I was looking for answers while blindfolded trying to find them. Autism was out there, gaining momentum as a diagnosis among children, yet there were still some who were uninformed.
While the autism awareness effort was blossoming a dozen years ago, two dozen years ago it still meant “Rain Man” to some, and three dozen years ago, it was a word found primarily in medical journals.
Dr. Alan Rosenblatt, a specialist in neurodevelopmental pediatrics whose practice is based in Skokie, notes that the prevalence of autism diagnoses—now 1 child in 68, 1 boy in 42—has increased dramatically over the years. According to “Autism Spectrum Disorders: What Every Parent Needs to Know,” published by the American Academy of Pediatrics in 2013, “… the disorder remains unchanged, but how it is classified and described [is] different.”
Rosenblatt, who contributed to the book, explains that 90 percent of autism diagnoses in the 1980s were made in people with intellectual disabilities who exhibited more pronounced symptoms.
In 1994, autism was included as one of five Pervasive Developmental Disorders in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), which allowed for a broader range of symptoms, including individuals with more subtle findings and children without intellectual disabilities. And, in 2013, the DSM-V further distilled the main diagnostic components to social impairments and characteristic behavioral symptoms by replacing the separate categories of PDD with one diagnosis: Autism Spectrum Disorder.
According to Rosenblatt, the broader range of individuals diagnosed with ASD was the result of the fields of psychiatry, neurology and neurodevelopmental pediatrics coming into stronger agreement over the years, along with greater professional and public awareness.
Which has led to 1 in 68.
Most people know one of those 1 in 68. Research is at our fingertips thanks to Google, support is just a click away thanks to social media, and awareness is evident when major landmarks glow blue in April, thanks to efforts by organizations such as Autism Speaks.
Autism is not just “Rain Man” anymore, and that’s because of parents who have pioneered a brave new world for those diagnosed today.
Three decades ago
Jason Harlan is a 29-year-old man living with autism. When he was 18 months old, his mom, Debra Vines, noticed he made little to no eye contact, was lethargic instead of playful and was not meeting milestones.
When a friend suggested Jason might have autism, Debra asked, “What is that?” At that time, she had no computer, no internet and nothing more than a library card to begin researching what would become her life’s work.
Nearly 30 years ago, there were no brochures readily available at the pediatrician’s office to help Debra understand the world that held Jason hostage. When she did manage to find a doctor who could perform an evaluation for what was still a very unfamiliar diagnosis, the cost was prohibitive and there was a long wait for testing.
So, Debra went to the library and checked out every book that had to do with autism. She finally found her way to Early Intervention services, and then to the special education services available through Chicago Public Schools.
Not satisfied with the level of intervention CPS provided, Debra moved to the suburbs, where she found school personnel who worked hard with her son during his most difficult years. She admits it was tough to teach Jason when his behavioral challenges got in the way.
“Back then, I didn’t have a ‘me’ to advocate for my son,” she says. Autism was still unfamiliar to most and services were scarce.
But through those ups and downs, Debra noticed the gaps in offerings for families of children with autism, and she began to close those gaps. She founded The Answer Inc. Based in Forest Park, The Answer Inc. is a nonprofit providing support, resources, education, recreation and advocacy for families impacted by autism. It also recognizes the need to continue both educational and recreational opportunities for adults on the spectrum long after they have left high school.
Today, Jason is a content and cheerful man who enjoys the company of his family and who has positive connections with his community. Debra recognizes that these connections are essential to his future, when she is no longer able to drive his happiness by her tenacity alone.
Even though her family experienced autism before it was a “cause,” this cause is now championed by a committed, caring community of heroes thanks to The Answer Inc.
Two decades ago
When Jack Wolf was 14 months old, his mom, Kim, noticed he was not responding to his name. Family and doctors suspected a hearing difficulty. When one doctor introduced Kim and her husband, Randy, to the term ‘auditory processing disorder,’ they bought their first computer and turned to the internet for answers.
Eight months later, another doctor diagnosed Jack with Pervasive Developmental Disorders, now classified as ASD. The diagnosis began the Wolfs’ journey with Jack, now 19, down a road that would be both rocky and promising.
Kim’s research led her to the Wisconsin Early Autism Project, based on the Applied Behavior Analysis approach pioneered by Dr. Ivar Lovaas. The couple dove into services, with Jack receiving 40 hours a week of therapeutic intervention. But when he started school, he regressed. Medication trials left him catatonic instead of capable.
The next period in their life with Jack was both challenging and heartbreaking, as the Wolfs tried to recalibrate both his medication and his education to get their son back. They hired a seasoned autism consultant, Sonia Dickson-Bracks, to customize a program for Jack, and, after much difficulty, Jack became the boy they knew again.
Kim became an active advocate for Jack, and she networked with local and national parent and professional communities that were gaining momentum as awareness of autism continued to rise.
Through these connections, Kim and Randy identified the characteristics of a quality school for students on the spectrum, and with their extended family, decided to build an organization that could serve students like Jack. Today, the Turning Pointe Autism Foundation in Naperville consists of the Turning Pointe CN Day School and the Career College for post-secondary students pursuing a vocational path.
Additionally, Turning Pointe provides recreational opportunities and support for families that are hardest hit by severe manifestations of autism in older children and young adults, whom other agencies are sometimes not equipped to handle.
Like Debra Vines, the Wolf family noticed what was missing in Jack’s world and they developed it for him—and for others like him.
One decade ago
When my son, Tripp Morrison, was 2, I attended a dinner party and, thankfully, was seated right next to a doctor. Polite conversation about my son’s quiet “quirks” led to an unofficial diagnosis by the time dessert was served. The next day, my son’s regular pediatrician would tell me that I was to blame for him not talking because I spoiled him.
Back then, unlike Debra Vines and the Wolfs, all I had to do was go home and Google my way to better answers.
Within days, I had an Early Intervention team in my house evaluating my son, and they immediately found him to be in need of a battery of services. And, for many months and years to come, these dedicated therapists came into our world every day, providing us with support and direction.
While answers were easy to come on the internet, they were not always accurate. But my computer kept me connected to the outside world and allowed me to find others who could relate to my life as a single mom with a son on the spectrum.
When the time came to find a professional who could perform a formal diagnosis, society had embraced autism enough to provide me with several quality options.
I felt lucky, most of the time. When I needed an autism specialist, I found one. When I needed answers, research was at my fingertips. When I needed to know what came next, I had a network of helpers to guide me. Through our therapy team, I was connected to a brilliant preschool program in my community. Not only did Cherry Preschool in Evanston help my son, but it also offered me a support system of other parents to lean on when times got tough.
And they certainly did get tough as my two younger sons, Wheeler and Tate, would follow their big brother into the autism diagnosis.
Families like Jason’s and Jack’s paved the way for families like mine. We had what they didn’t have: doctors ready to diagnose and treat, qualified and capable therapists; schools already in place that recognized autism and were developing programs and services.
However, just like Jason’s and Jack’s families had found gaps that required change, I found holes that needed filling.
I quickly learned that a professional change from teacher to lawyer would allow me to help others, because unfortunately, a diagnosis of autism often leads to legal challenges with schools and fractured families who cannot overcome the stress.
When my boys needed this kind of assistance, there weren’t many options. So, like other parents who have let autism instruct a new course of action, I let it determine next steps not only for my children, but also for me.
Just a few weeks ago, Lisa and Spiro Garbis learned their son, Jake, has autism.
They always knew something was different with Jake, who seemed just a few steps behind his twin brother, Jeremy.
When Lisa and Spiro brought Jake’s issues to their pediatrician’s attention, he was very receptive. In-home support was almost immediate and the services were exceptional.
When the time came to move Jake into the public preschool program offered by their school district, the transition was smooth. For a family new to the diagnosis, like the Garbises, increased awareness has led to increased understanding and availability of services.
However, that does not mean the diagnosis has been easy. Because Jake is a twin, his brother’s “typical” development serves as a constant reminder of what Jake is experiencing. While Jeremy is social and playful, Jake is still trying to master interactive skills. As siblings do, Jeremy takes the lead in initiating for Jake, while Jake is diligently working on engaging with others.
Yet in just a year at Bonnie McBeth Early Learning Center in Plainfield School District 202, Jake has come a long way. He has developed his aptitude for expressive communication, interpersonal skills and coping.