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Social Justice and the Autism Spectrum

What role do social factors play in autism diagnosis?

Chart showing increase in autism diagnosis

As the debate about the DSM 5 proposed revisions rages on, the focus of the media turns more and more to the upsurge in autism diagnoses.  What does the increase in autism numbers mean?  Are the standards for diagnosis too lax?  Is autism really becoming more common?  Or, is it that we are getting better at recognizing it? 

In the past few weeks, we have seen several high profile articles proposing the first.  Proponents of the theory that vaccination causes autism tend to favor the second.  I tend to favor the last.

The fact of the matter is that gender, race, and socioeconomic status are factors that can have a strong effect on whether you are diagnosed, how soon you are diagnosed, and  what care you can get, once diagnosed. The skewed statistics are well known, so much so that they are a part of nearly every article: "Autism affects boys 3 - 4 times more often than girls." "Autism More Prevalent in Upper-Income Households", "Autism Linked to Presence of Educated White People".  

Many take these stats at face value. I don't, because in my life I've had a unique opportunity to see these factors in action.  I spent the first ten years of my life on the west coast, in one of the most affluent areas of the country.  Although my teachers never made the autism connection, I know that I benefitted from a level of support that is uncommon in other areas.  It's something I can tell you from direct experience. 

When my parents finally closed the door on their marriage through divorce, my father decided to move back home to the small town in the Midwest where he had been raised.  At first my mother fought him, not wanting me to move so far away.  Finally, though, they reached a settlement.  I would go with my father, but would travel back for part of each year.  It was an imperfect solution, but a decent compromise.

So it was that on one of the last days of my third grade year that my father puttered up to the front of our school in his 1965 Volkswagen bug to pick me up.   Inside was our dog and cat, clothes, and a few major necessities.  My class and I met him there, and they bid me farewell as I left on what they considered to be a great adventure. 

Craters of the moon national park

Armed with a pup tent, and a directory of U.S. campsites, we set off on the cross country trek to my Grandmother's home.  Because he didn't have the money for hotels, he did his best to make it the adventure my classmates thought it — we waited out a windstorm, got caught in cattle drive somewhere in Utah, and had a close encounter with a Buffalo.  We saw Mount Rushmore, Craters of the Moon National Park and Yellowstone.  Eventually, we arrived. 

The culture shock began from the day we arrived.  My Grandmother's small but cozy home was located immediately in the shadow of a large paper mill — the centerpiece of the small town.  It emitted the most putrid odor I'd ever smelled.  It was like living directly in one of the sulfur pits of Yellowstone.  I spent much of my energy during that those first weeks simply trying to keep from vomiting.

The differences became even more obvious when I started school.  In my old world, I'd gone to birthday parties at homes that looked more like country clubs than private residences. My classmates' parents had looked like something out of Beverly Hills 90210.  Here, my peers lived in tiny broken down homes with front yards that were nothing but dirt. Their parents were missing teeth, and looked old men and women in their 20s and 30s.

Poor children

Children came to school in dirty clothes, smelling of urine.  Some had ear infections that went untreated so long that blood dripped from their ears.  This was common enough that, to several generations of kids, poverty was seen as synonymous with disease, filth and vermin.  Thus, poor kids were treated as the worst kind of pariahs, and the worst possible thing you could be called was "licebug."

Those that climbed their way out of this, did everything they could to cut ties with their pasts.  Because, in this community, being connected to this type of poverty in any way was social suicide.  That's what got me into trouble.

I refused to buy into this kind of prejudice and bigotry.  It made absolutely no sense to me that a child should be valued based on the income of their parents — and I was not at all shy about telling them so.  This got me targeted for vicious bullying  — not only by kids, but adults too.  The kids did the dirty work, with the adults complicit through tacit consent. 

Some had good intentions, but that didn't mean that good intentions always meant good outcomes.  When subjects like learning differences came up — there were many factors that would crop up that would cause them to be taken less than seriously.   I remember once hearing a conversation about a classmate:

"I feel bad for Bobby (not his real name).  He tries so hard, but he still seems to struggle so much. He's diagnosed hyperactive, you know, and he's on medication. But he still struggles."

"Do you think that's really it?" The other person responded, "He's so small and skinny — and he teeth seem too small for his face.  Are you sure he gets enough to eat? Maybe he's just malnourished."

I was appalled...I'd seen pictures of malnourished children in third world countries...but this was the United States!  It had never occurred to me to even consider that another child wouldn't have enough to eat.  It just blew my mind.

But, as an adult, of course, this conversation troubles me for other reasons. Under the circumstances, my classmate had been lucky to get a diagnosis.  Yet the very factors he had overcome to get one were the very factors doubters used to question it.  Unfortunately, this is a dynamic that we still haven't fully escaped today — and is even being promoted by national newspapers.

When I compare the care I got to the experiences of these children, there's no contest.  While my family faced its share of prejudice, it was nothing to what these children faced every day.  If the traits of conditions like autism and ADHD appeared in these kids — it wasn't seen for what it was.  It was seen as evidence of their parents' ineptitude and neglect and was used against them by those who preferred to view them as trash.   

These kids had nowhere to turn.  Their parents worked hard for every penny, yet struggled to pay for even the most basic medical care.   Where would they go for a diagnosis? In those days, there were no Regional Centers or Autism Specialty Centers — did they have the money to travel to a distant university to visit an obscure specialist? No.

This is what brings me to my doubts.  In my adult life, I've had the opportunity to travel to and live in many different areas of the country.  Nearly every place I have been has had pockets of poverty just like this.  How many more kids have faced these very same challenges? How many were left behind?

If the world of several decades ago was an environment that underserved girls, members of ethnic minority groups, and the poor, how can we trust the numbers such a system created?  If we don't have an accurate baseline, how can we possibly talk with any certainty of an epidemic? 

If, through education, awareness, and activism we are slowly but surely changing the inequities that kept certain segments of the community from getting a diagnosis, and the help they needed, wouldn't it make sense for the numbers to rise? I'd certainly think so.  And, when those in ivory towers campaign to invalidate these diagnoses — are we turning back the clock?

For me, I see the rise in autism diagnoses as a sign.  That the children that I so ached for all those years ago are finally being seen.  Finally being valued. Finally being taken seriously.  Finally being given the help that they need.

We need to keep it that way. 

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"Boys were more likely to receive a diagnosis of autistic spectrum disorder (ASD) than girls, even when symptoms were equally severe, according to researchers at the universities of Exeter and Bristol."

"While there is an increasing equality in terms of the likelihood that children from communities and families across the socioeconomic spectrum will be diagnosed with autism, a new study finds that such factors still influence the chance of an autism diagnosis, though to a much lesser extent than they did at the height of rising prevalence.

"The stronger SES gradient in ASD prevalence in children with versus without a pre-existing ASD diagnosis points to potential ascertainment or diagnostic bias and to the possibility of SES disparity in access to services for children with autism. Further research is needed to confirm and understand the sources of this disparity so that policy implications can be drawn. Consideration should also be given to the possibility that there may be causal mechanisms or confounding factors associated with both high SES and vulnerability to ASD."

  •  Parents, Advocates Seek More Prompt Diagnoses Of Minority Children

"In many ways, it is not surprising that there would be disparities and inequalities in the diagnoses and treatment of autism between white and African-American children. Research has shown that there are significant disparities in the quality of health care received by racial minorities compared to those received by non-minorities, even when insurance status and income are comparable."

  • Racial Disparities in the Age of Diagnosis of Autism Spectrum Disorder:Examining Factors That May Contribute to Delayed Diagnosis in African-American Children 

"There are a number of factors that may contribute to African-American children being diagnosed with ASD 1.5 years later than Caucasian children. Misdiagnosis, pediatrician-parent relationships, access to health care, and biases of healthcare providers have been studied and discussed in the literature as factors contributing to the delay in diagnosis of African-American children."

  • The Woman Who Couldn't Be a Refrigerator Mother (Race and Autism)