Asperger's Diary

Life through the lens of Asperger's Syndrome.

Bias, Bettelheim and Autism: Is History Repeating Itself?

Autism: Can bias block a diagnosis?

Minority Child with Teacher
"Autism caused by whiteness and affluence." When this headline popped up on my Twitter page, I had to roll my eyes. The subject of the tweet was a recent study from the Mind Institute which found 10 clusters of autism throughout California.  Each of these clusters were in an area that had a large concentration of white, highly educated parents.  

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The researchers have been very quick to qualify these results, attributing them to differences in access to health care, rather than race.  But readers and bloggers have been less cautious in their interpretation of this research, with headlines like: "Study reveals that Autism is caused by high concentrations of educated, affluent, white parents" and "Study: White People Have More Autism."  

The Mind study comes right on the heels of a University of Texas study that reported a lower prevalence of autism in the Hispanic community. Of these findings, the authors of the study state: "These findings raise questions: Is autism under diagnosed among Hispanics? Are there protective factors associated with Hispanic ethnicity?"

Personally, I'd be more concerned with the first question, rather than the last.  Are we are under diagnosing those in the Hispanic community?  If so, why? 

Irva Hertz-Picciotto, lead researcher on the MIND study speculated, "Hispanic parents were underrepresented in all 10 of the clusters, according to the study. That could be because some parents are reluctant to seek help from a state agency if they have a member of the family who is undocumented..."

A possibility...but what if it's worse? What if parents are seeking the diagnosis, but not getting it? 

Boy with AutismA September article in the Phoenix New Times, entitled "Lost in Translation: Autism Is Tough to Diagnose and Treat – and for Immigrant Families, It Can Be Impossible," discusses just how hard it can be for a Hispanic family to obtain a diagnosis, especially if they cannot speak English.

The article profiles several families' real life experiences in trying to get help for their children.  From the mother whose quest for a diagnosis took five years, as she was repeatedly dismissed, and unable to speak English, was unable to communicate with her doctors. Another whose severely autistic child was unable to get help, or go to school because the family didn't know what services were actually available, etc., etc.  It goes on and on.  

The Times writes: 

"Coming to terms with a diagnosis of autism can be challenging for any family. There is no cure (the issue of whether autism is a 'disorder' to be 'cured' at all is extremely controversial). The best families can hope for their children is to provide them with intervention and therapy. The earlier, the better.

Learning how to navigate the bureaucratic world of disability services and special education in Arizona — the mountains of paperwork, referrals, insurance issues, doctor visits, and qualifying exams — is enough to drive a parent mad.

Now try navigating that bureaucracy in a foreign land, in a language that you don't understand, without the cultural knowledge it often takes to understand unfamiliar medical and educational systems, lacking health insurance — possibly even citizenship status — on a minimal income and with no car."

The stories are very troubling, as are the statistics: 

"For Anglo families eligible for Medicaid, it usually takes three or four doctor's visits to get a diagnosis for their children, according to a 2002 article in the Journal of the American Academy of Child and Adolescent Psychiatry.

For the Latino families studied, it took more than eight." 

These experiences, I fear, are not unique.  As I've written before, I am a voracious consumer of information about autism and Asperger's.  A few months ago, I watched a documentary called "Refrigerator Mothers."  While some parts of it were difficult for me to watch (a mother discussed the day she told her husband she was going to kill their son, and points to pictures of her son and refers to him as being "gone"), I found it very enlightening in a lot of ways.  

One of the filmmakers recounts, "I was inspired to make Refrigerator Mothers after my personal experience with mother blame just a few years ago. My family's pediatrician told me that my three-year-old son's failure to speak and strange, self-isolating social behaviors were a reaction to what the doctor described as my over-anxious, over-bearing mothering. The doctor advised me to leave my son alone and that he would be just fine. Nine months later, my son was diagnosed with pervasive developmental disorder/autism. One of the few books on autism at my local library was The Empty Fortress, by Bruno Bettelheim. Upon reading it, I realized that I had experienced the legacy of the mother blame theory."  This happened in the early nineties. 

So much of what was recounted in the interviewees' accounts resonated with my own experiences in "the system" and blame that was directed at my parents for my unusual behavior.  However, the account in this film I found most chilling, was an account of a mother who, in her own words, "...couldn't even be a refrigerator mother." 

Why? 

She was black, and assumed not to be educated.  And the experts she spoke to knew, of course, that autism appeared in white, highly educated households.  So how could her son have it?   The message was clear...autism was a "whites only" phenomenon.   

 

When I saw those problematic headlines flash across my screen, I thought of this film, and this woman.  And I wondered....is history about to repeat itself?  

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Lynne Soraya is the nom de plume for a writer with Asperger's Syndrome.

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