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nightengalesknd

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Mar. 31st, 2016

One of my side hobbies in my practice of medicine is cultural competency.

Well, it isn’t actually a side hobby, but it seems that way, considering my actual job description and title and the thing people think I do is provide medical care for children with developmental disabilities. (And I do plenty of that.) So when I start talking about cultural competency, it’s treated as something nice that I’ve gotten myself into, something maybe I should give a talk about sometime, but not really a majorly relevant thing compared to ADHD and autism and all that.

But it really, really is.

Cultural competency is the idea that health care professionals need to comfortable with – and competent at – caring for patients from a variety of cultures, including cultures that differ from their own.

The obvious ways this is often taught center around things commonly thought of as cultures. Race, religion and national origin feature prominently.

Cultural competency, when done well, which is by no means always, emphasizes that providing culturally competent care does not mean memorizing lists of things about individual cultures. For one thing, this can lead dangerously into stereotyping. For another thing, it’s impossible. So largely, practitioners are encouraged to ask questions and to recognize there can be a wide array of answers. Knowledge about traits common to individual’s in a particular culture can be a useful starting point, but should never be an ending point.

For example, I have a young patient whose parents are from China and came to the United States as adults. Dairy does not feature prominently in Chinese cuisine. My patient has a dairy sensitivity.

Knowing that fact, I could assume that my patient and family do not eat a lot of dairy.
Or, knowing that fact, I could ask what sorts of food my patient likes to eat.
It turns out my patient loves pizza.

Having said that, it can help to be somewhat familiar with aspects of groups common in your area that are relevant to your field of practice. If you are a feeding specialist and commonly see families from Cambodia, it would probably be helpful to know something about common Cambodian feeding practices. How long do babies typically nurse? What are the first foods typically given to babies? How old are children when they are expected to feed themselves. (Tip – if children in a culture are not typically expected to self-feed, a child who isn’t self-feeding at the age typical for American children is not, in fact, delayed in that area.) Similarly, if you are doing autism assessments and care for a lot of children whose families recently came to the US from Mexico, it would probably be helpful to know something about cultural expectations for eye contact in Mexico. (Hint, it’s less expected than in the US, which means that eye contact probably isn’t as necessary as we’ve been told for effective communication.)

One of the most important aspects of cultural competency work is recognizing, though, that culture is not about the minority “them” who are distinct from the majority “us.” For people who have largely majority experiences, this can be a really tough concept. I’m reminded of the wedding cake toppers that came, for many years after people should have known better, in “white” and “ethnic.”

This is where privilege comes in.

(Yes, this is really a post about autism for World Autism Day)

Privilege is the ability to not recognize that your experiences are just as cultural as other people’s. When you have largely majority experiences, it’s very easy to feel as though your way is not just informed by your culture, but is in fact the one way, the true way, the normal way and just the way the world works, really.

The fish doesn’t recognize water because it’s always been there and will always be there and what else is there in the world, really?

When you have largely majority experiences, most of the people around you tend to also have mostly majority experiences. Most of your teachers share these majority experiences. Most of the books you read are about people with majority experiences. And when you do read a book about someone with a minority experience, it’s often written for you, to see how different this person is. It’s almost never a book where someone who shares that minority experience may see themselves.

Most doctors come from largely majority experiences.

In addition, medicine is a culture. Western bio-medicine, as experienced in the United States, is absolutely a culture. It’s a culture that is heavily informed by the mainstream American culture, with some additional cultural traits incorporated. It’s close enough to mainstream American culture that when most people begin their indoctrination into the western biomedical culture, which the indoctrinators would call “Medical School,” they don’t notice they are being indoctrinated into anything. Their beliefs and values are largely validated, not challenged.

(Here’s where the autism comes in.)

When future health care providers learn about autism, they learn about it from people who see autism, and other disabilities, as medical pathology. And nothing in their prior experience contradicts that approach, because most of what is in the general US cultural conversation about disabilities has been influenced by the medical pathology model.

There are medical aspects to autism (and to most other disabilities.) There are medical conditions for which autistic people are at markedly higher risk, such as seizures. There are some genetic conditions that are associated with autism, which are also associated with a higher risk of heart problems or thyroid tumors, so some screening procedures seem reasonable, and treatment if these health conditions are identified. There is a high rate of ADHD among autistic individuals, and some people benefit from medical treatment for this. There is a high rate of anxiety as well, whether as an innate part of autism, or as a predictable response to growing up autistic in an autism-unfriendly world, or likely both, and some people benefit from medical treatment for this.

And I am a medical doctor and I provide medical care for autistic children, and children with other developmental disabilities, and I address all of the above. And I think this is an appropriate thing to do.

But I don’t see autism as a medical pathology.

And I don’t treat it that way.

This puts me, immediately, enormously, profoundly, at odds against the medical culture in which I work.

I treat autism, overall, as a culture.

There’s the complication that many of my patients do not know of autism as a culture, and largely live in families that see autism as a medical pathology, and have minimal access to any other ideas about autism.

This is rather different from caring for a Burmese child of Burmese parents who is being raised in the United States but with the experience of being of Burmese heritage and with the understanding that Burmese culture is a thing.

So I am in the interesting position of treating autism as a cultural issue, under the guise of treating it as a medical issue (and I do, in fact, address medical aspects) so that I can help the child access autistic culture by proxy.

This plays out in interesting ways.

It plays out in even more interesting ways when I consider how many of these parents are part of autism culture, which is not autistic culture.

(The autism community are those parents and professionals who give you understanding looks when your kid melts down in the grocery store.)

(The autistic community are the autistic people who flap understandingly at your kid who is melting down in the grocery store. And who may have solutions about how to avoid the meltdown. These may not be acceptable solutions from a neurotypical culture standpoint, because they may include things such as not taking your kid to the store. They can share their own strategies, such as shopping at 2 AM or having groceries delivered.)

I am assumed to be part of the autism community. The autism community is the autism subset of the mainstream medical and general community. The idea that I could be part of the autistic community doesn’t fit into anything that anyone in that community knows or believes about autism.

It’s always interesting to pass as a member of a majority group, isn’t it?

I talk about what autistic adults say about eye contact and also point out the one study we finally have showing that autistic children have more difficulty focusing if also required to make eye contact. I print out copies of “Eyeballs.”

I talk about what autistic adults have said about the dangers of repressing stimming, and arguing against it as a therapeutic goal. I print out copies of “Quiet Hands.”

I talk about nurturing strengths and interests and not dismissing them as splinter skills. I talk to children seriously about their abilities and interests. I talk to teenagers seriously about how they can use their strengths and interests towards an eventual career.

I talk about autistics who type to communicate.

I offer books written by autistic authors who are not Temple Grandin.

I tell worried parents who are graduate students in the field of computer science that some number of their colleagues are almost definitely autistic, whether or not they are diagnosed and whether or not they are open about their diagnoses.

Sometimes I talk about the cultural norms of Autreat, where people could wear noise cancelling earphones if they wanted to, and fluorescent lights were replaced with incandescent bulbs and “flappause” was the quiet way to demonstrate appreciation. I explain color communication badges, which make clear the revolutionary idea that people should be permitted to have time to themselves, if that is what they want. I talk about the whole idea of an autism event run by and for autistic people.

I encourage families to talk about autism, not just as a thing that makes things harder, but as a thing that is OK and even sometimes wonderful. I encourage families to help their child meet other people like them, both other children and adults.

I talk about autistic adults as people, with a wide range of challenges and abilities, and as people who can be happy and also autistic.

And this is why cultural competency is not any sort of side hobby in my practice of medicine.
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