Today's Struggles with Autism Diagnosis
by Children's Author Brenda O'Bannion
As the director of special education services for an education service center in Victoria, Texas, I observe firsthand the growing numbers and multiple issues involved in the identification of children with autism in our schools. Working with school staff at the districts within the boundaries of our service center makes me familiar with the potential underrepresentation of children from diversity in the identification of autism. While most school districts do an exceptional job identifying students with autism, there seems to be a disproportionate number of identified students with autism among white middle-upper class families compared to the identification of students from African American and Hispanic low-socioeconomic families. The reasons for this disparity are complex and should not be reduced to any single factor. Nor should blame necessarily be associated with prejudices on the part of school staff. Indeed the disability itself tends to make identification difficult.
As a disability whose main identification factor centers around the lack of verbal communication and social skills deficits, it is understandable that the indicators of autism may be undetected in many cultures and ethnic groups. Among the population of low-socioeconomic families, much of the communication is non-verbal, relying on gestures and body language. The same is also true among some ethnic groups. There is also the issue of second languages which often delay the identification of several disabilities, including autism. As with any disability, early detection and intervention of autism is critical in ensuring positive outcomes for students. Valuable learning time is lost when students are not identified early in their school career.
A final factor relating to the underrepresentation of autism among students of ethnicity or poverty may be the lack of understanding and/or awareness of the disability itself among parents of diversity. This leaves the duty of identifying children with autism solely on the shoulders of school staff. Experience shows me that identification of a child with any disability occurs much quicker when a parent brings the potential disability into awareness. There seems to be a distinct advantage among the middle-upper class white population of parents based on their knowledge of autism.
My interest in autism began long before the disability came into the awareness and received the national recognition it is fortunate to have today. In fact, despite my 30 years in special education, I have been aware of the characteristics of autism most of my life, long before the identification of autism as a disability. I was raised in a family that lived in a very secluded part of Louisiana - literally on the banks of the Sabine River. My father’s only sister, Dawfie, was autistic. She was born in 1939 at a time when disabilities were, for the most part, solely identified as mentally retarded, now known as intellectually deficient.
Dawfie’s lack of speech, repetitive motions and serious social skill deficits were simply labeled as “idiot”. Unfortunately, at the age of five years old, she was placed for a short time in a state mental hospital where she was administered shock treatments. Surviving that, she returned home and spent the rest of her life in the remote poverty-stricken setting where she was born. Dawfie’s educational career in public education lasted exactly one day when my grandmother took her to school at the age of six and left her in a first grade class. The school principal brought her home before the end of the school day with a note stating: “Please don’t send her back. We can’t do anything to help her.” It was not until the age of 57, when Dawfie was administered a full evaluation, that she was identified as autistic with savant tendencies.
As an author of children’s literature, it was an easy fit for me to write a children’s book in which Dawfie is the main character. The book, entitled Crowbaby and Dawfie (Smooth Sailing Press, 2005), is a fictional story pieced together from memories of family stories related to me over my lifetime. The story centers on a true account, telling of Dawfie’s reaction to the absence of her brother during his service in the Korean War. Unable to verbally communicate her emotions over this change in her life, the story moves through thirteen months in which Dawfie resolutely watches for her brother’s return. Through the story, we are given glances into the struggle of an autistic child trying to communicate her feelings. Claimed as a “touching and poignant book” by Dr. Joyce Armstrong Carroll, a nationally known writing consultant of children’s literature, Crowbaby and Dawfie has reached the hearts of both children and adults since its release in 2005, particularly among parents of children with autism.
Dawfie’s Story (Smooth Sailing Press, 2008) is a non-fiction biography and counterpart to Crowbaby and Dawfie. In this book, I recount Dawfie’s life from that of a young child until her death in 1992. Dawfie’s Story, an easy read for middle grades and young adults, communicates not only the strong characteristics of a person with autism, but gives the reader insight to the person within who was not so very different from anyone else. Perhaps this is best illustrated by the words at the end of the book…words that I think Dawfie would have said had she had the ability. Called “Dawfie’s Message”, it says:
“Look at me, because I am here.”
“Listen to me, even if I’m difficult to understand because I have something to say.”
“Accept me, because I accept each of you.”
Regardless of a child’s ethnicity or economic standing, all children with autism deserve to be “found”, afforded an appropriate education, and most of all, be heard!