Our son Jake seemed to develop “normally.” He hit all of the developmental milestones. He walked, talked, played and was generally a happy, energetic toddler. And then, between the ages of 17 months and 2 years, everything changed. It was like Jake was on a dimmer switch; his behaviors began fading away. At first, he stopped responding to his name. We thought he had developed a hearing problem. Then, he stopped showing any interest in other children and even us, his parents. He didn’t look at us or interact with us. Instead, Jake’s favorite activities included flicking light switches, staring at ceiling fans and lying face down on the floor while pushing a truck back and forth in front of his face. By age 2, Jake stopped speaking entirely.
During these months of decline, I took Jake to the pediatrician for several visits. “You’re a first time mother. You worry too much,” he told me repeatedly. “Boys develop later than girls” he repeated in response to my question about why Jake no longer spoke. “Besides, he’s probably just being obstinate— part of the ‘terrible 2s.’” When I explained that Jake didn’t behave like any of the other 2 year olds at the playground, the pediatrician called me a “competitive New York mother” and warned me to stop comparing Jake to other children.
I finally reached the point where I took Jake to another doctor, a developmental pediatrician in Manhattan. Even though I suspected there was something wrong with our son, I must confess that I harbored some doubts. After all, I was a first-time mother, and I did work in the competitive world of corporate consulting, so perhaps I was overreacting. I think that’s why the news of Jake’s diagnosis was such a shock.
“Your son has autism.”
These are the words that no parent wants to hear, and yet over 48 million parents all over the world have heard them.
I was one of those parents.
I probably should have felt relieved that I had not imagined Jake’s symptoms. Finally, someone had a name for Jake’s condition. But I was far from feeling relieved. Instead, I brought Jake to another doctor, determined to get a diagnosis that was not autism. To me, autism meant no hope.
The second opinion revealed the same diagnosis, at which point I plummeted into a depression. When I was told that I needed to get Jake help as soon as possible, I figured I’d just take a few months off to sort out my emotions so that I could properly help Jake. But I quickly learned that was not the way it worked. Two key words kept coming up— early intervention.
That meant that Jake needed treatment immediately. The clock was ticking and the prime neurological window of opportunity was already beginning to close.
So began my journey into the world of autism. I found myself in a race against time to find the right treatment program, without any kind of warm-up. I researched absolutely every kind of treatment available, and when we finally made the decision to choose the behavioral treatment known as ABA (Applied Behavior Analysis), I thought the hardest part was over. But in fact, that was only the beginning. We ended up in a horrific lawsuit with the early intervention agency to get the services that we were legally entitled to. In the meantime, while other 2 year olds were out playing in the playground and taking afternoon naps, our son had the equivalent of a full-time job. Jake was in 40 hours per week of one-on-one ABA treatment, plus speech and occupational therapy. I gave up my consulting business in order to manage his home therapy program.
The news of Jake’s recovery was almost as shocking as hearing his diagnosis. After two years of intensive treatment, at age 4, Jake no longer met the criteria for autism. By age 5, he was attending a regular, mainstream school on his own with some speech and social skills therapy sessions after school. By age 6, Jake was considered “fully recovered,” which meant that he no longer met the criteria for autism and did not display any residual behaviors (i.e. idiosyncratic behaviors or speech delay). Jake is currently 9 years old and indistinguishable from his peers. He attends a typical mainstream school with no outside intervention.
I recognize that most children on the autism spectrum do not have the same outcome as Jake. Statistics show that five to ten percent of children recover from autism. While a “cure” does not currently exist for autism, what we do know is that hope exists for all children on the spectrum. It is my sincere hope that with more research, the rate of recovery will increase. Inspired by our journey, my husband and I established The Siff Exkorn Family Foundation, which provides funding for autism research and treatment.
Through journeying with Jake, researching for my book The Autism Sourcebook, and speaking with countless parents and professionals, I offer these tips for parents:
- Trust your instincts. You are truly the “expert” when it comes to your own child.
- Allow yourself to process your feelings. The news of the diagnosis can be emotionally overwhelming and you may be experiencing the stages of grief. Make sure you reach out to others for help. In addition to therapists and friends, there are wonderful live and online autism support groups.
- Access your inner power. You must become an advocate for your child. This may not make you the most popular parent in your school district (many of us are not), but it will ensure that your child gets the treatment services he/she needs.
- Take care of the rest of your life. Naturally, the focus will be on your autistic child right after he/she is diagnosed, however, it’s important to pay attention to your other children at home, your marriage and yourself.
The journey for everyone with a child on the autism spectrum is different and as a result, parents often feel alone. I know I did. But what I learned was that there is an entire community of people who’ve been there— who understand what it’s like to go through the pain and come out the other side— and who can offer support, wisdom and encouragement.