Stereotypes and their impact on ASD detection and school accommodations.
The entire concept of stereotypes irritates me. It irritates me because the concept, like stereotypes themselves, are rooted in a truth. The thing about this truth is that it only takes a single truth to create a stereotype and a number of single minded, misinformed individuals to keep a stereotype alive. Stereotypes, and the impact that they have on different communities, is part of the reason that it took so long to diagnose my son with a developmental disorder.
Let’s rewind for a second. The term “developmental disorder” is diverse and includes a number of mental and physical impairments that generally start during infancy or early childhood. By this definition, my son’s “condition” began very early in life. In fact, my husband and I began noticing differences between J and other children as early as two. He cried more than other children we knew. He fought so valiantly against separation from us that we eventually relented and stopped sending him to nursery school. He was so unable to cope with the day in and day out of school that it was suggested that he only participate in half day schooling; this lasted until he was in the second grade.
Throughout all of this -the suggestion of partial school days, his inability to function “normally” within a school setting, his inability to interact with his peers in a way that was socially acceptable- there was never a question of his cognitive ability. Instead, like most children of non European lineage or of lower socioeconomic status, it was assumed that my son’s lacking skills were the direct result of poor choices, lax parenting and a chaotic homelife.
Nature and nurture, like fire and ice, are essentially opposites. Nature is believed to be something innate and uncontrolled, while nurture is believed to be related to the environment and the things around us. Growing up in the right family or with the right skin color can be the fire or ice of developmental disorder diagnosis.
Since the early days of Autism Spectrum Disorder (ASD) testing, it has been believed that families of higher social standing are more likely to rear children with ASD. This is a biased belief, based on research that did not control for variables other than SES. This biased is part of the reason that my son was delayed in diagnosis and treatment.
While many studies suggest that there is no bias between ASD diagnosis across racial lines, many of us know that is simply not true. At the most basic level, there is a clear and visible lack of information and resources available in predominately non-white, lower SES areas. In addition to this, there is a much longer period of time between suspicion of ASD and actual diagnosis in the African American community. I believe three factors directly impact this, school administrator and physician bias, stereotypes about black children, and stereotypes about black parents.
School administrator and physician bias is the belief that symptoms or behaviors presented are related to a preconceived notion about a group or individual. In this case, the bias was related directly to my son’s symptoms. Like most little black boys in his situation, it was suggested that, if there was an innate issue, it was related to ADHD, not ASD, and should be treated with medication and more efficient discipline. So, being young and dumb, I accepted this “solution” and I medicated my child. I also began punishing him as these educated individuals suggested I should. This was not completely ignorant of me; many ADHD and ASD symptoms can be misidentified as symptoms of other conditions, leading to the diagnosis of one or the other. This happens and I understand that. In fact, many black mothers and fathers understand that. We see the struggles of our children and we act in ways that we feel are best for them. So, we do as we’re told and, only after we realize that “their” way isn’t working, do we begin to ask more questions.
Two years into this ineffective treatment, I began to ask more questions. One by one, these questions were flippantly cast aside. School administrators and practitioners alike were working on toxic stereotypes of young black boys and, in my opinion, that was hindering their ability to effectively treat him.
We all know what toxic stereotypes the masses hold about young, black boys and men. These stereotypes have time and time again led to injustice, brutality, and -in my family’s case- a lack of treatment. My son’s meltdowns were the result of “an unwillingness to control himself and a need for attention”. He didn’t “want to learn”. He “chose to run out of the classroom and hide in the bathroom”. While the behaviors were not acceptable, the phrasing suggests that each act was something he controlled; that there was a choice to be made and he did not choose the socially acceptable course of action. This is often how teachers and clinicians refer to children that they see as “bad” or “undisciplined”. In their eyes, these children do as they please without worry of consequences until they are dolled out. Everything is a choice to these children. This thought process and acceptance of toxic stereotypes cripples the possibility of receiving proper treatment for things such as ASD.
The last factor that I feel impacted the prolonged my son’s ASD diagnosis is the belief in stereotypes about black parents. During a number of different appointments and conferences, I have been, and continue to be, asked the same set of questions. I have learned to decipher these questions for what they are really asking.
“What has changed at home?” MEANING: What are you all doing that causes him to act like this?
“Has someone moved in or out?” MEANING: You can’t afford to live alone so have you taken on a roommate, or has his father/a boyfriend/a girlfriend moved in or out?
“Does he know his father?” (I’ve been asked this question at almost every IEP meeting I’ve ever attended and during one of his annual physicals). MEANING:…it’s pretty self explanatory.
This is just a few of the questions that I’ve been asked over the years and, question after question, suggests that the issue is one of choice, rather than an issue related to a developmental difference. This places non-white children, especially black children, at a disadvantage in terms of seeking and receiving treatment. Essentially, it places them on a track that will subsequently lead to trouble in school, which could lead to legal trouble in the future.
This vicious cycle of stereotyping children and then not providing them with the treatment needed to learn and grow has to stop. The first step is for us to recognize when our children are developing differently. I noticed this very early in my son’s life. Unfortunately, it took 5 years, 6 pediatricians, a bachelor’s degree, and a doctor’s office receptionist with an ASD son to finally get him tested. It also took 4 years of research on racial and SES disparities, 3 years of behavior notices from my son’s school, and a 3 inch binder full of my own observations to get a diagnosis. It shouldn’t take that much work for a parent to get treatment for their child and for a child to receive the services that other children receive for less. While all cases of ASD are different, there has to be a way to combat that very real threat of bias in testing and diagnosis. If we don’t figure this out, we are essentially dooming generations of children -specifically children of color and children of lower SES- to float through life without the tools that they need to live productive, fulfilling lives.
