Advocates for individuals with disabilities who represent the true diversity in race, culture and ethnicity in our communities have spoken out for decades about the realities of late diagnosis, lack of resources and support for their children and families.
Research on infant stimulation, early intervention and therapies for children with disabilities has rarely identified or included information on the race or culture of subjects. It is often assumed that only parents of anglo babies and children have been invited or volunteer to participate in studies in the past twenty years or more. Too often, children of color are excluded due to delays in diagnosis.
In previous decades, large local extended families or access to low-cost local 'Mommy and Me' or other parenting classes gave parents opportunities to compare their babies' development to others of similar ages. With the economic downturn, fewer parents are able to connect with others at parks or playgroups who have children of the same age. Support is especially important when a child is having health or developmental issues. Mainstream and disability-related parent to parent organizations may lack culturally sensitive outreach and welcoming strategies even where they are available and active.
Without being aware of the average age of developmental milestones, or symptoms of conditions like autism, most people take for granted that their child is progressing as he or she should. When they are concerned, relatives might reassure parents that little quirks or changes in behavior are nothing to worry about, and in many cases they are correct. But when my son showed early symptoms of insulin dependent diabetes, I was told that drinking a lot of water was healthy, and of course he would need to use the bathroom more. Because his sister's classmate in second grade was a boy with type one diabetes, I had learned about all the symptoms. After he was diagnosed I spoke with several mothers whose children had become gravely ill when their T1D symptoms were attributed to 'regression' because they had Down syndrome.
Some families, and sometimes whole communities, have historically had less access to healthcare providers, and some may not trust medical professionals. Even with the Affordable Care act, many parents of young children have access issues, including transportation and childcare for siblings. Parents who call in may be told to wait until a regularly scheduled appointment or wait and see whether symptoms improve or worsen. Symptoms of type one diabetes may resemble the flu, and delays in diagnosis are life-threatening. Behavioral changes may be considered age-appropriate if a medical professional is not familiar with a child's previous level of development.
In areas where predominantly white doctors and educators have little direct experience with multicultural families, a child's symptoms may be attributed to a different culture's child-rearing practices or even misrepresentations of race in TV dramas.
The growth of for-profit home remedies and treatments preying upon the vulnerability of families of newly diagnosed children has increased the lack of respect and a growing refusal to acknowledge reliable scientific studies that do benefit our families. The rate of autism is the same among unvaccinated children as those protected from deadly and debilitating childhood diseases. It is not surprising that disability awareness campaigns are often derailed by quack claims and efforts to debate ignorant proselytizers.
There are other surprisingly effective obstacles to early diagnosis of children of color, including a lack of diversity among researchers, early intervention professionals and staff. In many cases, outreach materials are not even translated into the three most common languages spoken in the community, for hospital clinics, pediatricians or daycare providers to distribute. There must be better representation of communities of color on advocacy boards and outreach for early diagnosis to benefit very child. Because almost all children with disabilities in awareness campaigns are white, medical professionals as well as families and paid caregivers may be slow to recognize symptoms or seek developmental tests for children of color. We can do better than this.
Microaggressions in Everyday Life
Black and Married with Kids:
7 Things Every Parent Needs to Know About Autism
Autism, Like Race, Complicates Almost Everything
SF Bay Area: Mocha Autism Network