Tuesday, May 15, 2007

Autism in Black and White


photo credit-Blisterman


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.

11 comments:

Ms Clark said...

Some minority groups are less likely to pathologize a kid for different reasons. They are less likely to go to the "man" for help and more likely to go to their own relatives for help.

I want to see a study of how lower income and ethnic groups deal with autism and what the outcomes are for autistic kids in different groups. My person prejudice says that kids in lower income families in "ethnic" families and "ethnic" neighborhoods do much better. They aren't put through the sausage mill of 40 hours a week of ABA nearly as often.

Entitled parents go absolutely psycho on trying to fix their kids. I don't believe and good comes of it, not in the long run, and probably not even in the short run.

Bonnie Ventura said...

I agree with Ms Clark that minority families often are more accepting of neurological differences; they don't feel as if they need to fix every little quirk, and they're more aware of the psychological harm that can result from being singled out as different. And it's not just the families -- it's the doctors and teachers in minority communities too.

My son was unofficially diagnosed by teachers and counselors. Because he was generally doing well in school without any extra services, I didn't want to put him at risk of discrimination by having anything official on file.

He has a black pediatrician, who is a friend of my husband's family. A few years ago, while at a checkup, my son was rocking back and forth in the examining room in a very autistic way. The doctor asked him what he thought of school. My son (bless his heart) answered that he liked school and had fun talking to his friends. I could just see the proverbial wheels turning in the doctor's head: "this kid's doing fine, no need for a label." So the doctor never said a word about autism.

I'd guess that happens a lot...

Joeymom said...

I know there is definitely a diference around here. There is a "dsproportionality" in special education that is blatantly apparent if you walk into a special ed room here. Up until this year, my child was the only white student face in the room. We had a large HeadStart program- and large though it is, it is not large enough, they turn away about 3/4 of the applicants each year. This is a program for preschool that is supposed to be based on income. However, there are only 5 white students in it this year. These kids tend to get recognized as special needs sooner, and get help sooner, because they have someone watching for it. However, insted of being categorized as Autism, they are usually designated either Developmental Delay or Mental Retardation. Since these kids are being identified by "professionals", you'd think they'd get categorized correctly! But... they are black. So in this town, there is no money and they are shoved where-ever is "easiest."

Trying to get in touch with the parents is even worse. As the chair of the parent advisory committee, I've been trying to get more parents on the committee and getting some input into the system. My latest tactic is to hang around when kids are supposed to have teacher conferences and try to catch all the different parents- but I haven't been very successful. The parents I do see often have an attitude of "the school is supposed fix the kid." They don't want to know who I am, have my contact information, or show up meetings. I can understand the last. But not take information about another parent who can present your concerns to the school? Personally, I think they see that white administration than think, "Oh, yeah, right, like these people are goin to listen to ME."

It is very frustrating.

kristina said...

Charlie's diagnosis was initially very difficult for my Chinese American family to accept. The extended family structure is proving very important for his future----at first, a number of relatives had many reservations about Charlie's having autism (I think they equated it with mental retardation). On the other hand, while my husband's Irish Catholic family was very accepting, this was in part because they have often said things of the "he's going straight to heaven" sort; of the "he's a blessing" sort. ---- I have noted a kind of easy welcoming of Charlie by women of many ethnic groups (esp. when they are relatively recent immigrants).

Thank you for writing this.

Camille said...

I can't remember where I read it, but I think I had a pdf file of a chapter from a book that the MIND Institute put out... I'm pretty sure it was for professionals. Anyway, Sally Rogers is a researcher who is very much into studying early intervention and early detection (she was on 60 minutes when they did that show from the MIND Institute.
She's a tiny little white woman and her husband, who is also a researcher in psychology, is black. I assume the MIND found a place for him because they wanted her, but maybe they see them as a great team.

At any rate, her husband John Brown, co-wrote a chapter with her about autism in minority communities. That's where I got some of my information on how autism is treated differently in different communities. I think it was them that pointed out the some minorities really don't want a daughter to get any label because she won't be able to get married if people find out that she has or had a problem.

There also is the reaction Kristina referred to among some religious people in ethnic communities that autism is God's will, the child is a blessing... and conversely the child can be seen as a punishment from God or bad karma or whatever.

Camille said...

I should add, the reason I assume that the MIND might hire him only to get Dr. Rogers is because before I knew that Sally Rogers was married to John Brown, back when the MIND was in it's very opening months, I knew of a really ugly situation that resulted in an African American woman quitting because she was treated like dirt by someone at the MIND.

The woman was working with Dr. Hertz-Picciotto on setting up the CHARGE study, she had been at UCD in the Vet school for some time and the PhD's she worked with thought she was incredibly smart (I think the woman was on the autism spectrum, myself...) anyway, this woman told me about the abuse and said that a Canadian researcher who was working at the MIND (not just visiting) had treated her like a cleaning woman... really obviously like he thought she was far too beneath him to treat with any respect.

The woman didn't have the energy to take them to court and sue them for discrimination, but I have to say that I wish she would have. This woman is in group photo online in something that the CHARGE study put out to advertise themselves.

Sam I Am said...

Thank you so much for this post. I have always taught in inner city classrooms that had a population of 70% minority students and a free and reduced population of 80-90%. Even though I am white, I have long been an advocate of minority children and have witnessed first hand discrimination on many levels. My last teaching position, however, was in the "whitest" district I had taught in. My particular building had a 40% minority population. Ironically, our district had been sued by the state many years back in special education for several reasons, but one was the number of black students who qualified for special education compared to white. We had too many black children receiving services for behavioral diagnosis. Therefore, it was believed that teachers were quick to find something "wrong" with black children and refer them onto special education, and that there was a lack of understanding of culture of the children.

Wind ahead a few years...of which I entered the district. Now teachers are afraid to refer any African American children for services in special education for fear of meeting a quota they don't want credit for. Hence, when I left the district 2 years ago, there were many minority children being denied services they deserved because teachers were and are afraid to refer them now, and the black community refuses assessments frequently when it is suggested because they fear discrimination.

I feel for both sides and feel so sad for the web we have woven. Yet all of my white peers believe there are no race issues in this day and age. Oh my!

Thanks for bringing this to the forefront. I will have to check out Kristina's post too, haven't been by there for a couple days. Peace!

Club 166 said...

Ms. Clark,

One thing that interacting on a greater level with the black community (by dearth of being the parent of two black kids, as well as interacting with black professionals I've trained with) has taught me is to really realize that the black community is way more diverse than the media would have us believe.

Thus I believe that any studies need to differentiate economically disadvantaged blacks with parents who have low educational achievement from middle and upper middle class blacks. Lumping them all together makes enrolling subjects in studies much easier, but muddies the waters too much, IMO.

As to the "entitled parents" thing, that is one of what I consider the "hidden blessings" of having a special needs kid. Especially since Buddy Boy is our oldest, we never had the chance to get on that train. Now, as outsiders, it's easy to see just how ridiculous it is-many contemporaries of mine ask each other which pre-schools their kids go to, and where you go to high school brands your social status on you for the rest of your life. But I understand the peer pressure to live their lives a certain way, which includes fixing and pushing their kids to the top, no matter what.

Bonnie,

Initially I myself was resistant to having a label placed on my son. I think that stemmed from a variety of different things. Partly I think it's a male thing. Males are less likely to visit doctors, and more likely than women to want to "fix" things themselves (think of asking for directions when lost in the car).

But as a physician, I am also acutely aware of how HIPPA regulations in the US, which are ostensibly set up to protect patient privacy, actually allow access to your medical records to all sorts of people without your position. These include the police, national security officials, government researchers, etc. Also, every practitioner's office makes you sign a statement that they can give your information to just about anyone they deem necessary, including your insurance company. Their databases are forever.

Joeymom,

I think that the less others are like us, the more likely we are not to empathize with them, and just put them "wherever it's easiest".

Without wanting to go into politics, I also think that the way the welfare system is designed in this country encourages dependence upon on the government, and tends to foster attitudes regarding whose responsibility it is to "fix" things.

Kristina,

The reaction of your Chinese family sounds very much in line with what Grinker described goes on in Korea. Do you see it that way, too?

As to the reaction of recent immigrant women, I suspect that these women come from more rural and poorer backgrounds than the average American. I think that most people in other parts of the world just accept that they have to deal with things that come their way-physical disabilities, fluctuating crop yields, and political instability (many immigrants come here because of political problems in their own country). They just add developmental disabilities to the long list of things that they have to deal with. And many may not be savvy enough in the US system yet to know how to use it to get services to assist them.

Camille,

I wonder if the "not wanting to have one's child labeled" in minority communities is more associated with membership in that minority or economic/educational status. It would be interesting if that could be teased out in research. Certainly amongst uneducated people in this country it was not uncommon in the not too distant past to see both mental illness and cancer as punishments from G-d.

As to the workplace discrimination thing. Too often I hear stories like yours, where someone really got shafted but left the job rather than go thru the process of fighting it. The process is too long and costly to go thru to see resolution in a timely manner. On the other side, most employers are terrified of running afoul of federal anti-discrimination lawsuits, and at times this fact is used by some incompetent minority employees to keep from getting fired. This fear on employers sides also tends to lead (IMO) to hiring a lesser number of minorities than the employer otherwise would (trying to avoid potential monetary/legal problems). An unfortunate situation all around.

Joe

Club 166 said...

Sam I Am,

Your post happened while I was composing my last reply.

Great points, all. I really think that most of our inter-racial problems stem from lack of communication, which leads to misunderstandings, hurt feelings, and prejudice on both sides. It sounds hokey, but I think that what's needed first is open dialogue. Not by political leaders and those who would benefit economically, but on the part of normal folks.

Anonymous said...

Hi
Black genes have more active hormone receptors, and this could simply delay autism, essentially a hormone sensitivity problem.

Regards, Mark.

Steven Sutton said...

i really enjoy reading this blog, so informative. thank you.