I developed an interest in autism within the black community after my recent presentation at the Yale Medical School. During a 60-minute presentation, I discussed my experiences as a single parent of a special needs child.
I grew up with two special needs relatives, which made me familiar with the appropriate language that should be used when describing a person with special needs. The term “special needs” should be used instead of the word “handicapped,” and the phrase “developmentally delayed” instead of the R-word. Therefore, when my daughter Taylor was born, these words were a part of a built in schema dedicated to people with special needs. I was also somewhat prepared for the deafness because my neighbors were hearing impaired.
I was trained early in the proper etiquette associated with communicating with individuals that were hearing impaired. It is important to always include people with hearing loss in the conversation. Excluding them makes them feel uncomfortable and is considered to be rude by individuals in the deaf culture.
These experiences indirectly prepared me for what would a major part of my life: parenting a child with severe hearing loss and a diagnosis of autism. What I was not prepared for, however, was the automatic placement into yet another minority group: black single parent of a special needs child. It has been a journey raising Taylor because of her host of challenges and setbacks as well as the triumphs that most parents experience.
Up until recently, I was content with being a part of three separate groups: parents with special needs children, parents children with autism, and parents children with hearing loss. Within each group, however, I was almost always the only black parent. I had become accustomed to being the minority in certain academic settings and within the field of education; it did not bother me. However, over time it was yet another difference, and at times I longed to chat with other black parents to see if they shared some of my same experiences with doctors and therapists. I wanted to know their reactions to prodding questions and side looks from public. I also wanted to know if they also were also sometimes not given ample respect until they stated their background with a brief synopsis of their CV.
I am not opposed to interacting with parents of special needs children in non-black communities—just like any other ethnic group, there are shared experiences or similar stories and at times it is just easy to have one less difference. So far, I have met only one black family with a child with autism here in Connecticut. There are certain questions that loom regarding black families and autism: how does race factor into the diagnosis and the treatment for children with autism? Though it is not a conscious thought in the forefront of my mind, I sometimes wonder how clinicians and researchers factor in the idea of race within their studies and treatments. How much do they consider the demographics of the community in which they serve, and how can their practices be better implemented if they would consider these variables?
While living in New Haven, I have yet to meet more than one family of a child with autism. This family has triplets, with two children on the spectrum. Since Taylor is also deaf, we tapped into the deaf community. When I attend conferences and book signings, we are often the only black family. I began to ask myself, were black families unaware of the resources for children with autism? Have they not been given ample time or proper information? Are the organizers of these events not advertising to every parent?
Even if one of the answers to one of these questions was yes, it would still be unfortunate for the parents as well as the organizers if they are both unable to gain valuable resources to move forward with the main goals for the child. I recently received an invitation in the mail for a conference geared at reaching all hearing-impaired families. The price of admission is affordable and they are also offering financial aid. Sometimes parents are unaware of the opportunities that are out there for them and I have yet to feel unwelcome at any event that I have attended over the past decade.
The diagnosis of autism does not discriminate. There are specific needs that are not being met within certain areas of the population. There is an additional need for support for parents and families in the black community whose children are on the spectrum. Five years ago, while living in a small middle-class section of Brooklyn, I knew of several African-American families that had children on the spectrum. We met through a private non-profit meet-up group, which offered support services for children with special needs. It was helpful to engage in such a program where individuals with the same background can understand your needs. We were able support each other through our day-to-day trials as well as our challenges with the education system.
From what I have noticed while living in Connecticut, there is a definite disparity between more affluent communities and the urban communities in regards to services for special needs children. Though families in the urban area are asked to participate in trials and studies, they are not offered the same kind of services because of the lack of funding. Moreover, in poor urban communities, many parents lack the resources and the access to specialized physicians that are geared specifically towards children with autism. It is widely known that there is an emerging achievement gap in the country, specifically among the urban poor. How can those discrepancies be handled? How can therapists and clinicians reach out to those populations that otherwise would be unable to use their services?
Not all parents in urban areas understand the educational system well enough to advocate for their children. There is a need for more programs aimed specifically at educating children with autism. Just like most typical children in the educational system, special children will one day grow up to be adults. How are parents and teachers preparing these students to lead independent lives? The already strained social services agencies are lacking funding for the needs to assist the general population.
When I was approached by a social service agency regarding the Department of Developmental Services they warned me that we would most likely not get services because of the lack of funding. This organization provides parents with additional services as well as much needed respite care for their children. If the general population is lacking in terms of jobs and educational services, what about special needs children specifically children with autism? What will their future look like 10 years from now? These questions need to be addressed. It is important for the general public to understand that one day these children will grow up and their parents will not always be around to care for them. Special needs children are in need of empathetic people and knowledgeable enough to advocate on their behalf.
Initially, I was afraid to view the statistics fearing the worst and somehow hoping for a much better picture. Autism is the one of the fastest-growing statistics for children between the ages of 3 and 5. One in 99 children is diagnosed with autism and I dared to imagine what the statistic looked like within the African-American community. After a limited amount of research I found that there are several grim statistics and realities regarding autism and the black community.
Unfortunately, many African-American families do not enroll in early intervention services once their child is diagnosed. It has been proposed that though autism occurs across different races and cultures, African-Americans are also more likely to be diagnosed with autism based on school evaluations rather than clinical evaluations. This also relates to the finding that African-American children are often diagnosed later, giving them less of an opportunity to utilize services aimed at curbing certain behaviors associated with autism.
What does this mean and how can African-American parents get help? A study completed by the University Of South Carolina School Of Medicine found that many relationships with professionals was negative because of the race and socio-economic status of the parent. The study found that the four black single mothers experienced disrespect, and their parenting styles were also discounted. If there is one thing I do know, it is that children with autism and their parents can relate on some level despite diagnosis and the background. I am interested, however, if the same achievement gap that exists for “typical” children also exists within the special needs community. How is it being addressed, and without ample research, how will people continue to address the issue?
It is more about the needs of this specific population than my desire to see a black family at a local support group meeting. More research regarding these deficits must be conducted and services should be put in place to plan for the future of these children.
Editor’s note: April is National Autism Awareness Month.
Eraina Davis is a teacher in New Haven. She blogs at http://raina-thegoodlife.blogspot.com/.