I was reading psychologist Dr. Frederika Theus’ 2008 report, “Asperger Syndrome in the African American Community: Barriers to Diagnosis.” The report focuses on obstacles to help-seeking behaviors (i.e. seeking consultation with doctors) that may affect accurate diagnosis and treatment of AS for African Americans.
Socioeconomic factors such as lack of health insurance and limited income may delay diagnosis and make access to medical or support services challenging for many black households.
Also, other issues including mistrust towards the medical establishment (e.g. Tuskegee experiment) and fears about bias regarding special education placement may negatively influence African American families. For instance, blacks accounted for 27 percent of students identified as emotionally disturbed but were only 17 percent of the student population in 1998, according to a 2002 report by the National Research Council.
“When these types of behavioral concerns are raised, some African American parents may respond with a level of suspicion regarding a subtle form of institutional racism,” writes Theus.
As a black mother, this report resonated with me on a personal level. This blog details our lives after my son's diagnosis of Asperger’s syndrome in December 2010. What I haven’t shared is how I almost put a wrench in that.
Like all new parents, my husband and I waited with baited breath for our son to speak. At 14 months old, he was walking and saying, “dada.” Then, he spoke nothing beyond incoherent babbles. So we taught him sign language. He became an expert at saying, “please” “more” or “like.”
By the time he was 18 months old, it became apparent that we wouldn’t get beyond that. So he was evaluated by a speech pathologist, who concluded that he would be an “emerging talker.” We were relieved.
However, when things didn’t improve at two-years-old, we had him evaluated again. He impressed the speech evaluator with his knowledge of shapes and colors but not so much with his lack of words. Our son received speech therapy.
Two months later, the speech pathologist noticed that our son had difficulty engaging in imitation play or recognizing facial cues. The SP suggested increasing the weekly sessions for our son and an occupational therapy evaluation. After bombing the evaluation, our son had OT twice a week.
My husband and I painstaking drilled our son on each lesson along the way. We thought that our son was progressing. He could now pronounce words beginning with “p” “d”, “n” with ease. He was speaking in at least five-word sentences. He could read books and spell words like “mat” with blocks. He could follow one-step directives.
As we approached the summer of our son’s third birthday, the SP started recommending that he take the Committee for PreSchool Special Education (CPSE) exam for possible admittance to a local preschool special education program.
Our son was cheerful, playful, obedient and—finally—articulate. However, behaviors that my husband and I had accepted had become more pronounced. Our son was stimming: he was wearing a groove into our living room as he paced back and forth. His habit of repeating the last few words of every sentence wasn’t as endearing to outsiders. His attempts at imitation play weren’t coming along as rapidly as expected.
The CPSE test loomed in the background. The SP gently reminded us that the deadline was nearing. I was dead set against this examination. Our son was improving—as per confirmations of his providers including her own—why did he need a special education class?
The diagnosis of autism spectrum disorder wouldn’t occur until a year later. So I was outraged by the suggestion that our brilliant boy needed this class.
My degree and background in journalism flew out the window. Instead, I was a fed-up black woman who felt that my child was being pigeonholed into an educational system that has historically placed a fair share of black children in such settings.
I vowed that my son would not be “labeled” early in his academic journey. Skeptical and lacking information, my husband supported the decision.
Yet despite my fury, there was a gnawing persistent thought in my mind. He might actually need it. One afternoon, I discussed some of my concerns with the SP. Patiently, she sat and listened. Then, she described a typical special education preschool classroom including how the providers could assist in our son’s development.
She explained that while our son was smart, without early support, he might recede into the background pretending to understand lessons. But in reality, he would be lost. The thought resonated in my head days after the conversation. Guilt grew and grew in my gut. So my husband and I discussed the situation again. We relented and allowed him to take the test.
After meeting the qualifications, our son began special education preschool in the fall. A year later, one of his providers in that program, his school counselor (and a special-needs parent), recommended that our son be evaluated by a developmental pediatrician. He was diagnosed after the initial visit to that doctor.
As a special-needs parent, I walk a tightrope between preserving the unique qualities of my child and preparing him for the demands of our society.
As an African-American special-needs parent, my constant job is dispelling any false characterizations of his abilities and behaviors. Even my own.
