Earlier today Kristina Chew on AutismVox had a great blog about “Race and Age of Autism Diagnosis”. I started to write a response on her blog, but after I got to 4 paragraphs thought I should just write my response here, rather than totally hijack her blog.
I have seen studies that relate how blacks are diagnosed at a later age than whites, and have not been surprised. Because of my unique position (white physician parenting an autistic bi-racial (African American/Caucasian) 7 year old, I have a few things to say on the subject. About the only thing that could have made this article more relevant to me would be throwing adoption into the mix (both our kids are adopted). But even if you’re part of what I perceive to be a mostly white middle class (I think you have to start off rich to be upper middle class and parenting a special needs kid) blogging audience, I invite you to read on, as I think a lot of the issues are similar to the discrimination that autistics in general are subject to.
First (and perhaps most importantly) blacks and whites in this country generally don’t talk to one another (not exchange pleasantries at work, but really talk). In the absence of a true dialogue, opinions on both sides are mostly informed by stereotypes and the media. In the parlance of autism, blacks and whites just don’t “get” each other.
Think about it. If you’re a white American and reading this, you might have to think a while before agreeing with the statement “The majority of blacks in America have a job, are not on welfare, and don’t live in the ghetto.” You might have to think a bit longer before agreeing with the statement “The majority of blacks in the ghetto are not criminals”. And you might not realize that just under half (about 47%) of blacks own their own home. The media in this country (popular media as well as the news) portray average blacks as unemployed criminals playing rap music extremely loudly and having multiple kids with multiple different single women in the ghetto.
If you are black, consider this. I was in the locker room at the YMCA the other day (I don’t work out nearly as much as I should) and I overheard a couple of black guys in their late twenties talking. One of them was telling the other about how the main purpose of the electoral college is for whites to disenfranchise blacks. I was like “Huh?” The electoral college (for those outside of the US) is to keep smaller rural states from becoming disenfranchised. It was set up when the country was founded (when blacks voting wasn't even a consideration). And if anything, it empowers minority voters in each state, where a minority population can swing all of the electoral college votes of that state. There are many other examples of things that many blacks believe that just aren't so, such as that AIDS is a disease that was purposely introduced into the population by the US government to kill off black citizens.
When it comes to cultural differences, there are certainly many. Consider church services. Think of the difference between a fairly staid mainstream Episcopalian service full of white people, vs. the hand clapping, organ and choir singing found in the African Methodist Episcopal (A.M.E.) Churches often found in African American (AA) communities. AA culture encompasses a wider range of acceptable exuberance for various times in public (besides being in church). But this does not mean that AA parents cannot recognize when behaviors are abnormal in their children.
Now let's move on to how blacks interact with, and view, organized medicine. Blacks have a latent distrust of the medical establishment, stemming at least in part from things like the Tuskegee syphilis experiment, started in 1932, where 400 black men who had syphilis were studied to see the natural course of the disease. The men were not told they had syphilis. Although there was no treatment for syphilis when the study started, by 1947 there was, and antibiotics were withheld from the men in order to continue the study. The study was only stopped in 1972 when public health officials leaked it's existence to the press. Not medicine's finest hour (to say the least), and little wonder that many in the black community still don't believe what doctors tell them, even if they're trying to help them. Also it's no surprise that many AA's avoid doctors as a general rule.
There are a number of factors in the doctor's office that also contribute to poor communication, which leads to delayed diagnosis. First of all, doctors (like all people) relate well to those like themselves. If their patients are middle/upper middle class and white, white physicians are more likely to relate to them on a personal level and take their complaints seriously. When patients are perceived to come from a lower class, than doctors are more likely to assume a paternalistic role in dealing with the patient, rather than a cooperative one. And given the general perception of blacks as a whole, unless Bill Cosby walks in as a patient, the fact that the patient is black has him/her perceived to be of an inferior class by the doctor.
Because blacks, while employed, are more likely to have jobs that don't include medical insurance they are less likely to have a regular physician that they visit. They are more likely to receive episodic care by different providers on each visit in Emergency Rooms.
Complicating matters, at the present time in disadvantaged minority communities seeking education is seen as selling out, and "acting white". After all the hard fought battles for equal education, many in the black community don't seem to value it. This can lead to a delay in seeking help that would lead to increased educational services.
Finally, as pointed out by Sarah in response to Kristina's blog, a lower level of educational services being available for disadvantaged kids may provide less incentive for their parents to seek a diagnosis. I am not sure if this is correct. I know that in the city I live, there are fairly comparable services available to all comers. There may be an assumption in the AA community that since general education services are less then special ed services would also be less, but judging from posters on a local listserve, this isn't so.
So we have a combination of negative societal perceptions of blacks, poor communication between doctors and patients from different cultural backgrounds, a general distrust of the medical system by the AA community, a perception (and perhaps reality in some cases) of lower level of services being provided once a diagnosis is made, and at times less value placed on education by the AA community combining to make it seem nothing short of miraculous that diagnoses are made at all.
The general perception of blacks (especially young black males) as being more likely to be criminal, or at least anti-social, also leads to greater use of diagnoses such as oppositional and defiant disorder (ODD) instead of outbursts being recognized as being part of autism.
For our part, Buddy Boy was first given a series of diagnoses (developmentally delayed, sensory integration disorder, ADHD) before he was diagnosed at age 4 with PDD-NOS. I don't think he necessarily was diagnosed later because of his race. But I do recognize that since his parents are white (and one of them is a physician) that those factors may have totally negated any affect race may have had on his being delayed in diagnosis.
Lastly, I think it's important to recognize such things as the impact of race, since by studying it we may gain some insight into how overt and subtle prejudices can affect how all autistics (as a minority group) are treated.
Me- Joe, husband of a great wife, and dad to two great kids, who were both adopted at birth.
Liz- My ever understanding wife, who manages to wear many hats (mom, advocate, therapist, teacher) for our kids.
Buddy Boy- Born in 2000. Funny, intelligent, inventive, and autistic. Loves machines.
Sweet Pea- Born in 2002. Typical little sister. Competitive, outgoing, and smart. Loves anything pink.