Subscribe
Previous Post
“He can’t have autism because he’s not white.”
When Jim and I first heard words to that effect while watching the 2002 documentary Refrigerator Mothers, we looked at each other and shook our heads. Those words were said by a physician to Dorothy Groomer, one of the mothers profiled in the film; her son Stephen was showing many signs of autism, but doctors did not think he could have autism due to his race. I was reminded of those words that Groomer heard on reading an article in today’s Hartford Courant on Autism and Race. Ronnie Bonner, Jr., was 2 1/2 when his mother, Corendis Dawson-Bonner, was “convinced” that he had autism but he was not diagnosed until he was 6 years old. He was diagnosed with developmental delay, attention deficit disorder, hyperactivity and a social and emotional disorder; obsessive-compulsive disorder and oppositional defiant disorder were also suggested.
Getting the right diagnosis and appropriate treatment has made all the difference, his mother says. Now 12, Ronnie is lively, affectionate and far more communicative. However, Dawson-Bonner can’t help but wonder how much better off he might have been if he had received the right treatment from the age of 2.
“He’s in the seventh grade, and he’s reading at a fourth or a fifth grade level,” she said. Why wasn’t he diagnosed sooner?
That’s a question that might be asked about many African American children with autism, who, according to one study of children on Medicaid, are diagnosed on average about 18 months later than white children.
This 2002 study was done by David Mandell, assistant professor at the University of Pennsylvania School of Medicine; he studied chilren on Medicaid “in an attempt to eliminate income as a factor in quality of care” and found this: “White kids were diagnosed at 6.3 years old, compared with 7.9 years for African American kids. This late age for diagnosis is “‘not good for anybody,’” Mandell is quoted a saying.
Dawson-Bonner cites both her being African-American and also her socio-economi status as factors in her son’s late diagnosis:
“I don’t have a degree. My husband doesn’t have a degree…….I’m from Hartford.”
…..”I think if I’d been a white woman from the suburbs, it would have been completely different. I think they would have been more apt to find out the real thing [diagnosis] rather than `let’s hurry up and label this so we can get on with it.’”
Ronnie is now 12 years old and in the seventh grade, though reading at a fourth or fifthe grade level. Another parent, Amy Nelson, notes that her son, Daniel, was considered mentally retarded when he was three years old; he is now 15 and attends high school. (And I will note that, despite his delays in academic skills such as reading and his severe language disability, the diagnosis of “mental retardation” has never been mentioned regarding Charlie, my half-Asian half-white son and the child of two professors.)
Dr. Thyde Dumont-Mathieu, a developmental pediatrician at the University of Connecticut with a clinical practice at St. Francis Hospital and Medical Center, also cotes these as reasons for disparities in diagnosis and care for children with autism: insurance, financial concerns, and cultural and communication differences.
I remember when I first learned of autism from a speech therapy assessment in early 1998. I did not have a computer at the time and only read books from library and a year later got computer. I recall always hearing or reading that those with autism, at the time it was like 1 in 10,000 were all very beautiful kids with blonde hair, blue eyes and big ears. I just remember always reading a parent saying how adorable their kid was and that seemed to be a sign of autism back at that time. Then of course it was to check if they were deaf or had Tourettes syndrome. They were both ruled out with both my kids, although the SSI psychologist also gave Nick the MR diagnosis.
This article reminded me of something. One time I was riding the bus home. The bus drivers, who is African American, was talking to one of the riders about her son. She wasn’t sure what was going on with him. So the rider suggested that he might have Asperger’s. So I mentioned that I have Asperger’s. I talked to her a bit about Asperger’s. With the increasing awareness about Asperger’s, I wonder if her race had any impact on her son not being diagnosed?
Thanks, Karen, and thanks for passing on your sites!
Wow, this is an excellent article. Thanks so much for sharing this. I’ve also seen the documentary Refrigerator Mothers and it is heartbreaking and alarming on numerous levels.
MyAutismStory.com
MyQuirkyKid.com
1818 days ago
[...] article futher illustrates the impact of race not only on the age of autism diagnosis, but also on the educational services a child receives, [...]
The racial dimension of diagnosis is infuriating, as is the gendered dimension.
I think many girls on the spectrum don’t get diagnosed properly because the language acquistion trajectory for typically developing girls is steeper (faster/earlier) than from typically developing boys . . . i.e. when your girl isn’t talking at 2 she’s already way behind (for t-d-girls) but not so far behind for t-d-boys.
Interesting to me that VAB’s boy also couldn’t get a Dx in NYC. Would you email me about this, or direct me to your posts about this? m o t h e r s v o x a t g m a i l d o t c o m (trying to deflect the spambots with the spacing, but you can figure out the address, yes?)
Kristina,
Thanks for posting on what I consider a very important topic. I started to write a response this morning, but after getting very long winded decided against hijacking your thread and instead posted my thoughts here (can’t seem to imbed links tonight):
http://club166.blogspot.com/2007/05/autism-in-black-and-white.html
Kristina,
Thanks for posting your thoughts on what I consider to be a very important topic. I started to write a response this morning, but after getting very long winded decided against hijacking your thread and instead posted my thoughts here.
Joe
I often think of “awareness” as less than precise term; in these cases, its importance cannot be stressed enough.
Sarah, excellent point you raise re: services vs. diagnosis. I think, in my state anyway, they tend to go hand in hand. The trend seems to be that there is less likelihood of poorer families getting medical attention in a timely manner and thus they may not get some of the support they need to learn how to (a)ask the questions they fear most and/or (b)get plugged into additional resources. Many are not aware that early intervention services and early screening is available to them through state programs.
Honestly, I sometimes think that we wouldn’t be as far ahead as we are today were it not for all the medical intervention we had due to Nik’s extreme prematurity and complicated medical history. We were very fortunate in that regard.
Thanks for posting about this issue. I think it’s important to emphasize that later diagnosis doesn’t inevitably have long-term negative effects, though. Heck, I have undiagnosed middle-aged relatives with PhDs who probably would have been diagnosed on the spectrum had the current awareness and diagnostic criteria existed when they were children. Early diagnosis can be helpful, but only if the knowledge is used appropriately. IMO the poorer educational services available for economically disadvantaged children with special needs is probably a bigger problem than simply the diagnosis issue.
Mine is mixed heritage and he was dxed at two. Although admittedly this is the UK… and they did flap the mental retardation label around a bit too I seem to remember. not as an either or, but as an additional dx.
Tragic on so many levels. A sad example of how prejudice – about race and about autism – hurts everyone!
I think when you throw in *any* factors that don’t fit the stereotypical norms long used by medical researchers (past generations) — white, middle/upper-middle class, educated parents— those groups who historically would have been more likely to participate in research studies perhaps?–then there is a strong tendency to look for other causes. We ran into somethign like this with Nik. Because he was so premature and had sucha tough time in the early months, many professinoals kept telling us to “wait and see” or “Oh, that’s b/c he was so premature. He’ll catch up.” Interesting to note (though how relevant I am not sure) is that during the time we’ve been fighting for diagnosis, my husband has been going to school and working part-time and I am a stay-at-home mom. Our son qualifies for public assistance. I have few doubts that in our “previous life” as two college educated working professionals (my husband with multiple professional engineering licenses to boot), there wouldn’t have been much hesitation to diagnose the ASD earlier. Some, perhaps…but not nearly the run-around we’ve gotten.
Just my observation.
Oops! NYC (the home of MothersVox) is where our guy did NOT qualify.
I’m not at all surprised to find that race plays a role in diagnosis, especially where a child presents with less characteristics or less clearly identifiable characteristics. In one city our guy didn’t qualify for an diagnosis, in another he does. And look at the trials and tribulations of MothersVox (in the same place where our guy did qualify) to get a diagnosis. Labeling is inherently a matter of culture, custom and belief. If you bring race, ethnicity, socioeconomic status or anything of that sort near an arbitrary and subjective process like this, it’s bound to make a difference. It’s like having magnets in the room when you are trying to use a compass.
I definitely think it would be best if the cultural aspects of labeling were to disappear, but another approach would simply be to give children the educational services and support they need, based on what they need, rather than how they are labeled.
Dr. Chew,
I am guessing that isnt the same amy nelson from AFF. People who read your blog might thinks so if they dont check carefully. amy from from AFF is in the UK
That is stunning.
But I know that there are many white people in our community that have had the same problem and same late dx.
But you have to wonder why this is happening regularly to an ethnic group in the US.
*sigh*