I was helpless two and a half years ago. Near Christmas 2009, our pediatrician threw us in the dark sea at night and told us to swim. I did not know how but I knew I had to, so my son would get to shore. I did not know if I was heading to land or further out, circling or not. All I knew was that I had to go keep moving to get out of the water.
At an ear infection appointment in December 2009, my son’s pediatrician said my son might have autism. She told me that she would make a referral for diagnosis, at one of the best facilities in America, in our own backyard, UC Davis MIND Institute. She was not sure whether her referral would work, but she was going to do it nevertheless. It turned out that her referral was not worth the paper it was written on.
When I spoke to U.C. Davis MIND Institute, they told me that they were, primarily, a “research” facility, backlogged over six months in appointments, and it was unlikely the referral would result in an appointment. Upset, scared and lost, I asked what to do.
They referred me mistakenly to a place called Far Northern Regional Center. This center was located in Redding- 165 miles from our home, one way. A round trip would be 330 miles. I was devastated. Was this the closest place that could tell me my son had autism? Was it so rare or specialized that I would have to travel this far outside the Capitol of the State of California to get a diagnosis? That seemed – bizarre. [And indeed it was bizarre- there are many competent pediatricians, pediatric neurologists, psychologists and other health care providers that could have diagnosed my son in Sacramento but I met with nothing but incompetence and ignorance on our journey.]
I called. The person asked where I was located. I told her. She said their center could not help me. I was outside their region. I asked if she could refer me elsewhere. She did not know where to send me. No one else in their office could help me. [This was how disconnected the whole Northern California health care system was in our experience.]
I ended up “googling” and found another Regional Center on my own. I wondered if this was the right fit. I called. They said they probably could not help me, but if I would fill out a questionnaire, they would consider it and someone would call. It was all I had, so I took it.
Meanwhile, I contacted a psychologist colleague who had assisted me in legal cases I’d had in the past. I asked if, as a favor, she would come out and tell me her opinion about whether my son might have autism. She told me she did not know much about autism but she’d come out to observe him and give me her thoughts. She did so. I was grateful, but she refused to give us any diagnosis and was noncommittal about whether my son had autism. The only thing I remember her saying was that he was “toe-walking” and I could get him to stop, by saying “down on feet.” [I have never stopped him from standing on his toes.] So, I was still lost.
Finally, a local Regional Center case worker came to our home and did an “observation” to determine whether a referral for diagnosis was in order. After about 30 minutes, this man made the referral. My son was exhibiting many signs of autism – predominantly echolalia, inappropriate toy play (staring at spinning wheels on a remote control car) and lack of eye contact. He made a referral to UC Davis MIND Institute.
What my pediatrician could not accomplish in 6 months, the right Regional Center did in 6 weeks. And so the diagnosis was made. At one of the pre-eminent establishments associated with the word “autism”, in the country. But guess what? Once they handed me a diagnosis, they gave me absolutely no direction. They did not refer me to a speech, occupational or physical therapist. They did not urge me to contact the local school district for services, the school was required, by law, to give me. They never said a word about Applied Behavioral Analysis (ABA). They gave me a diagnosis, smiled a pitying smile, and waved goodbye.
They put us on their boat, dried us off and dropped us back in the water telling us we were, in fact, adrift in the Sea of Autism. They did not point the way to shore.
I found our speech therapist through a local, free Parent Magazine ad. My husband and I paid out of pocket about $400 for an assessment. My son was “assessed” over two days. Individual speech and a social skill class were recommended. We had finally reached land, four months after being thrown in.
Once we started, I was lucky enough to sit in a waiting room with two mothers with boys on the spectrum, older than my son who’d been through IEPs and ABA and brought me into the “sisterhood”. I found real help. Not a doctor, therapist, psychologist or school official – two moms – Julia and Jen. Mother to mother, they knew. I could never thank them enough. It would always be too little, but I offer it now, again, THANK YOU both.
I was overwhelmed the first few times I waited with them during social skills class. They shared everything with me. Especially, the importance of ABA and contacting the school district. It all seemed so foreign and hard to remember. I wrote it down.
Eventually, when the water cleared from my lungs, I realized those two moms, and the speech therapist that put me in the room with them, were not just safe harbor. They were part of my family now. And it was good to be home.
[I learned on Friday that my son’s speech therapist, who works for the speech therapist that helped us to shore, has accepted a position in another town. I was going to write about the transition and how difficult it will be but instead, I was reminded of this journey and it came out instead. ]