Recently, my daughter’s respite worker, Adriana (a caregiver provided by our local regional center), told me about her sister, whose child has been diagnosed with autism. The sister is in the process of setting up all the services for her child — speech therapy, physical therapy, Applied Behavior Analysis, occupational therapy — and that’s just the beginning. With two other children, the mother is feeling overwhelmed, to say the least. Adriana asked how I juggle everything and stay afloat.
“I don’t know … I just do it because my child needs help — I need the support,” I said. “It just becomes part of your life, and it’s worth it because of the progress you will see in your child.”
Her question led me to think back to my early years as an autism parent.
“But also tell your sister she’s lucky to get all these services right away. I had to fight for every service, sometimes for years on end. I spent hours and days on the phone. Nothing was handed to me — nothing was easy,” I said. I paused and concluded, “There were many dark years.” Tears filled my eyes as I recalled that period of my parenthood.
Goodness, how did I get through that time?
Adriana’s face fell. She took a deep breath, then placed her hand over her mouth. “I’m so sorry,” she said. Our conversation ended then because I had to pick up one of my kids from school. But as I drove, the thoughts and feelings continued to flood my mind, and I scribbled notes at stoplights.
The conclusion I came to on that 15-minute drive was this: Autism parents, you have it so much better now.
Of course, every parent’s experience will be different, but in 2004, when I was struggling to figure out what might be going on with my child, I was lost. There was no Checklist for Autism in Toddlers that pediatricians administered at kids’ two-year checkup. When I expressed my concerns at my daughter’s appointments, the response from the doctor was, “Let’s wait and see. She’ll probably grow out of it.” So I waited, and I worried. When my youngest child was given the CHAT test years later, all I could think was, I wish they’d had that test when my daughter was young. It would have saved me from a couple years of chaos.
In 2005, after suppressing worries concerning my daughter’s behaviors (the stimming, staring at ceiling fans, head shaking, arm flapping, lack of eye contact, delays in gross and fine motor skills), my neighbor, who was a speech therapist at a preschool, knocked on my door. She asked to come in, and with a somber look, said, “I think your daughter has autism.”
My mind raced as I tried to make sense of the word “autism.” No doctor had mentioned this in reference to my daughter, and she was 20 months old at the time. Yes, this might still be young by today’s standards for obtaining an autism diagnosis, but doctors now are more likely to point out the obvious warning signs, and my child had many of them. Hearing the word autism brought on a suffocating terror because of the stigma surrounding the diagnosis at that time. I thought my child had no future — that she wouldn’t be able to talk or live on her own or have any friends. I was scared out of my mind.
You autism parents just starting out — I don’t know how hearing the diagnosis made you feel. Maybe it was the same as me. But the level of support and understanding for autism now is much better. Doctors know more, teachers know more, even the general public knows more. We’ve reached a new level of acceptance, though some might argue that the stigma remains. Autism is not a death sentence — it’s simply a diagnosis.
After the tearful conversation with my neighbor in 2005, I arranged for my daughter to be evaluated by a neurologist to see if she had autism. We were brushed off completely, even with my list of concerns, and told she was too young to even be considered autistic. We moved to a new state, and soon play groups and church activities began for our daughter. This was when I saw how pronounced her delays were. But because I was told, time and again, that she would just “grow out of it,” I pushed my worries aside, hoping that was true.
When your child can’t do the same things as other children, but has no diagnosis or treatment plan, it can be very lonely. My hope wore thin over the next two years. A friend suggested I have my daughter evaluated by the school district when she was 3 ½ years old. No doctor had ever told me about the school district’s resources. Why?
Now, I think most parents are aware that their local school district’s services begin at age 3. If they aren’t aware, every doctor is, and won’t hesitate to refer a child. We have come a long way in making resources known, and that is a good thing.
After the school district’s evaluation, my daughter was placed in a special-education preschool immediately, with speech, physical and occupational therapy. No autism diagnosis yet, but having these services gave me hope again. People believed me, and they believed in my daughter. They told me to apply for services from our local regional center (in California, they provide in-home resources for children in every region based on the level of disability). Our application was denied.
A year later, when my daughter was almost 5, she was diagnosed with autism, so we applied to the regional center again. Again, we were denied. I knew she needed more help, so I wrote emails, secured an advocate and spoke out at meetings. I made sure my voice was heard. After almost four years, at an evaluation done at the regional center, she finally qualified. She was 7 years old by this time. Most children begin ABA at age 3.
Back then, the only way I could get ABA was through the regional center. In other states, most parents paid out of pocket. A few years ago, I began hearing that ABA was going to be covered by insurance in some states. As of Dec. 1, 2015, 43 states covered the therapy, and this year, all federal workers will get coverage. We’ve come a long way. And through all the years of fighting for my daughter, I became a stronger person.
Autism parents, you do have it so much better now, but more importantly, so do your kids. Celebrate that, and don’t give up.
You might also be interested in: