Autism story. Our autism story. Yes we have lived autism from the beginning.
How It Began: My Daughter
Our daughter made us aware of what autism is. Early in life, she lagged behind in her development. This was pronounced in her talking. I was with Hannah all the time so I didn’t notice. The Parents as Teachers (PAT) person who visited me, did. So John and I had to do something about it. At the time, we were using a local clinic. He pressured the doctors to set Hannah up with child psychologists and a pediatric neurologist. After videotaped behavioral observations, the reports were forwarded to the specialist, Dr. A. He gave her the diagnosis, Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS).
Autism takes many forms. PDD-NOS is a form of autism. Hannah was three when she was diagnosed. Thanks to our work with her at home and early childhood schooling, she thrived. She learned to talk at age five. She was and is, mainstreamed in local public schools. She struggles mainly in the social arena. Hannah has no challenging behaviors. She has never gone to the principal’s office. And her teachers have always loved her. We credit Hannah with our awareness of autism. Raising her has been an education!
Our autism story. Go back in time to the 1960’s. Born in 1960, I was “different” from the beginning. Mom reports that I did everything late. She notes that I had delayed speech. I remember that my childhood records say that I showed signs that I “could” talk. In my childhood years, adults had names for me. They labeled me as “spoiled” and a “problem child.” As a child, professions called me “emotionally disturbed,” a label I resented fiercely. In my teens, professionals labeled me “behaviorally disordered,” a label I despised just as much. I wasn’t aggressive or oppositional, which these ugly labels imply. Professionals diagnosed me with “mild cerebral palsy” because my walking was delayed. Confused and worried, Mom kept taking me to professionals.
Experts knew less in those days. Therefore, they sent me to special schools. Two separate times I was in residential care. During my school years, my peers often bullied me. They called me names I can’t repeat here. They sometimes got physical. The bullying was most intense in 9th grade. All of this only instilled in me confusion, fear, shame, insecurity and jealousy toward “those normal others.” I was deprived of any explanation for these experiences. What was the point of it all? At least other people who suffered had explanations or labels for their experiences.
Getting A Formal Diagnosis
Our autism story. So how did Hannah’s story become mine? For a few years, I tried to find autism professionals or doctors who diagnose adults. But getting diagnosed with autism as an adult isn’t easy. This diagnosis is much more available in Western countries outside the U.S.. Actually, I learned of a facility in my area. They had psychologists who could diagnose autism in adults. But I learned that I couldn’t access their services! That was because of my insurance. I couldn’t afford to pay out of pocket.
I had to keep looking. So I did. Finally, I learned of a place located in a university. Two hours away from us, I had trouble getting my husband to transport me to this facility. I made the appointment well in advance. I saw the doctor, Dr. B., a neurologist. He performed tests and interviewed me. Later, I prepared Mom for his phone call. One afternoon, Dr. B. called Mom. Her memories of my childhood were blurry. But she did the best she could. Days later I got a report saying I had “Pervasive DEvelopment Disorder.” I was relieved. But unlike many adults who get a diagnosis, I didn’t draw my identity from this diagnosis. And, unfortunately, I wasn’t able to keep a follow-up appointment.
How You Can Help
Our autism story. So this is how it is with us. Unfortunately, Mom sees autism as shameful and bad. She adheres to the “disease” model of autism, instead of the “neuro-developmental disorder” model. And so she advises Hannah and me to keep our autism diagnosis secret. I fear that this only keeps the stigma of autism going. How is this connected with a pro-life blog and site? It’s connected because my life as an unborn child may have contributed to what led up to the diagnosis.
You can be part of the solution. Our story is not unique! I’m sharing a petition set up to get funding for autism services. This is people’s lives. These services include adults as well as minority children. You can click the link below to sign this petition. Then you can circulate this petition.
Will you help?
Please CLICK HERE
to sign and circulate this petition!