angst, asperger's, autism, label, \
Since birth, Patty has been a fighter.
The morning before Patty was born I woke up dreaming that she had died. I was frightened, but I made an effort to put it out of my mind. Subconsciously, I must have known something was wrong. That afternoon she was found to be breach. After I delivered her naturally, the neonatal team unwrapped the cord from around her neck and ran her down the hall to the neonatal intensive care unit. She had sucked in amniotic fluid and stopped breathing.
One of the nurses came back to the delivery suite and told us that she was a very, very sick baby, but she was also a fighter and that was a very good sign. She had torn out all the tubes they had put in, and they had to restrain her arms and legs. When they rolled my wheelchair into the NICU, her little hands and feet were tied to the sides of the bed. Traumatizing though it was, Patty was well enough to go home in three days with a monitor.
From the time we brought Patty home, she clung to me. I jokingly called her my little barnacle. Patty always knew when she was going to be dropped off at the church nursery or with a babysitter. Will and Mary would go to the church nursery with hardly a peep of protest. 10 feet from the nursery door, Patty would start screaming. She fought to stay with us.
When Patty was 18 months old, the special education specialists encouraged me to have her tested to see if she could benefit from special education services. Her older siblings, Mary and Will, had been placed in special education classrooms in the preceding six months. Patty met the criteria for special education due to speech impairment and slower than normal development. They wanted to place her in a classroom out of district, but I said that I could not manage the task of taking her to another place and also be available to take Mary and Will to their special ed classrooms in the district. So at 20 months, a speech therapist came to our house to provide early intervention for Patty.
Will was diagnosed with autism when he was seven years old, and Mary was diagnosed with PDD.NOS when she was nine.
Patty was diagnosed with “atypical” autism because she didn’t fit all the criteria for autism. The psychiatrist noted that she was very bubbly and friendly, but he gave her a diagnosis, in part because her sister and brother were on the spectrum.
In her later elementary years, she began to fight against the diagnosis. And I have hoped that she is right. She was in a learning disability classroom because she had a difficult time learning to read. She received speech therapy from an early age because her speech was very difficult to understand. And she benefited from programs that were available to children with autism and other disabilities. Because of her diagnosis, she was able to develop a relationship with Fred, an Arabian horse at the therapeutic riding program. And without the diagnosis, she would not have been able to have one-on-one swimming lessons.
However, after she learned to read, she began to resent being pulled out of the classroom to meet with the speech therapist and social worker. She said they were treating her like she was stupid. She was not autistic like her brother and sister, she said angrily. I had to agree that there was something else going on. She was able to lie from an early age. Will and Mary never told me a lie until well into their teens. Even then, the effectiveness of their lies were laughable. Patty learned to tie her shoes, bounce a basketball, and write at a much earlier age than Will and Mary. She enjoyed reading the comics.
When Patty entered middle school, she noticed the clothes that other students were wearing, and wanted to have the same clothes. Will and Mary did not really notice or care what their peers were wearing. Patty wanted to fit in and was aware of peer pressure. She fought against being pulled out of middle school classes because she said, I’m not disabled. I’m smart. And she was, but she fought against the services in a very unpleasant way. Because of that, she was not allowed in gifted programs. Her brother, Will, was identified as gifted in fifth grade. But Patty had to fight to get into those programs, despite the highest test scores in her all of her classes for several years running.
In high school, Patty made the sessions with her speech therapist so miserable, that we opted to end speech therapy. She was still the on the social worker’s caseload, but she would walk right past the office without responding to the social worker’s greeting. Patty wanted to be free of the label of autism. She said that she only had the diagnosis of autism because she had grown up with an autistic brother and sister. It was environmental, she said.
When Mary and Will went to college, they both made use of Disability Services. Mary graduated in five years and Will graduated Magna Cum Laude in four years. Patty has refused any help in college, and is on the Dean’s list every semester. With no help.
Patty has a love-hate relationship with autism. On the one hand, she doesn’t want to be identified as a person with autism. On the other hand, she loves her autistic siblings and staunchly defends them, and anyone else who she senses has autism. She was so worried about Will when he moved away that she had headaches for weeks last summer.