The road to diagnosis is not always straight forward, even today. Each family that shared stories for my book, brought up the process that resulted in their child being labeled autistic. Their experiences were varied. So were their reactions to the assessment process and the eventual diagnosis.
Some families were shocked when their child was diagnosed, others were relieved when they finally had answers.
Obviously, the story shared by the mother of a child born in 1964 was different from that of the child born in 2006. There was, surprisingly, one thing similar between the stories shared by these two women. Each of them believed their child had autism long before the doctors diagnosed them. Their journeys were both long and frustrating.
The first mother can’t remember the title of the fascinating book she read forty years ago, but it perfectly described her son’s characteristics and struggles. The doctor who wrote the book called the disorder autism, and blamed it on unfeeling mothers, whom he called “refrigerator moms.” Her child’s doctor, on the other hand, named her son’s condition childhood neurosis. She asked him why he was not saying her son was autistic. This doctor responded that he did not want to give the little boy a label that would follow him the rest of his life.
The boy was not diagnosed with autism until he was in his late teens, his mother can’t remember what year. My guess is probably after 1980, when autism became an official medical diagnosis. By this time the child had been in and out of various educational settings, both at home and away, as his mother tried to find a way to keep him safe from his own self-injurious behaviors. Now, as a middle-aged adult, he is able to live with his mother and attend and enjoy an adult day program geared to his needs. Having that “label” allowed him access to this program.
What about the mom whose child was born in 2006? Surely, I thought that her child’s path to diagnosis would be simple, but that was not the case.
Her son struggled academically, behaviorally, and socially from the time he entered preschool and through three years of elementary school. He had severe ADHD, sensory issues, and concerns with expressive language. He eventually began to show delays in receptive language.
So many things pointed to autism, yet he never quite qualified for that diagnosis. Several specialists told her he would grow out of it. He was finally diagnosed with autism when he was eight, after his parents found the right medical professionals to assess their son. By this time, they were thankful to hear the words, “Your son has autism.”
Now this child is getting the educational support he needs. His parents moved to a school district that they felt would best provide the services that would benefit their son., services that would not be available without the diagnosis.
Several parents explained that the post 2000 autism diagnosis for other children came quite easily. Other parents shared a different story of their experiences, even in this century. I wondered how this could be.
Why can autism diagnosis be so complicated?
After my conversations with various families for my book, I developed a greater appreciation for the differences in children on the spectrum that led to a more challenging diagnosis process. The signs that educators or doctors might consider indicators of autism might be displayed earlier or later in a child’s life. Some of these characteristics may never appear in a particular child on the spectrum. Sometimes strengths in one area may mask deficits in another area.
I also developed a much greater understanding of the many other conditions that are often prevalent in children with autism that can complicate the process. Children with autism might also have severe ADHD or Obsessive Compulsive Disorder. Doctors sometimes diagnosis these conditions without seeing the autism.
Straightforward or challenging? How did the diagnosis go for your loved one with autism?