Barriers to Diagnosis, Services and a Free and Appropriate Education
By Lamar Hardwick
Just a few weeks ago I celebrated my forty-second birthday. I was born on June 5th, 1978. We didn’t know much about autism back in the late seventies. I suppose that is one of the reasons why I wasn’t diagnosed until I was thirty-six years old, nearly six years ago.
I am often asked why I believe that I went undiagnosed for so long. In the past I have summarized my journey to diagnoses by sharing the following barriers to an early diagnoses:
First, there was an overall lack of education and exposure to autism in 1978. In 1980, around the time I should have been diagnosed, things weren’t much better.
Second, I believe there was a misunderstanding of developmental milestones. I grew up in the era where boys were believed to develop slower than girls. I’m not sure how much truth there is to that, but I do believe it can be somewhat misleading.
Third, I grew up in a military family and we moved around constantly. The therapist who diagnosed me in 2014 believed that our constant relocation may have a played a part in explaining away behavior that might have helped with a diagnosis earlier in life.
The fourth reason that may have led to me going undiagnosed for so long is a term that I call “cultural camouflage.” Cultural camouflage refers to the way in which culture impacts how autistic characteristics and traits are experienced, and perceived. Simply put, one’s culture or ethnicity may be a factor in how others experience and perceive my autism.
Earlier this year the CDC released new data that reported that the prevalence of autism is now one in fifty-four. Along with this information came some new and interesting data about autism; the findings suggest that boys are more likely to be identified with autism than girls. Four times as likely, to be exact. In addition, girls who are identified with autism are more likely to have a co-occurrence of an intellectual disability than boys. (39% of girls vs. 32% of boys).
The CDC reported a rise in the percentage of first developmental screenings for children who are at least thirty-six months (from 74% to 84%), and it also reported that the diagnostic gap between black children and white children had now closed, although Hispanic children continue to be diagnosed at a lower rate than white children. While disparities still exist, it seems encouraging on the surface that things are moving in a positive direction.
The last section of the report, however, caused me to look beneath the surface to what may be a much larger issue to address. The report stated that black and Hispanic children without an intellectual disability may not be identified at the same rates as white children.
So, here’s the dilemma; according to the diagnostic criteria for autism as described in the DSM-5, there are two critical factors that call this new information into question. According to the DSM-5: “Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).”
This certainly fits my profile and the profile of many other adults who are diagnosed later in life. If social demands don’t exceed the limited capacity of a child, then some of the traits may not fully manifest themselves.
The second factor to consider: “These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.”
Intellectual disability and autism spectrum disorder frequently co-occur; to make co-morbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
If intellectual disability does not better explain the signs of autism, and if intellectual disability is not a factor in diagnosing a child, then how do we explain the fact that black and Hispanic children without an intellectual disability are still not being diagnosed at the same rates as white children? If we also consider the fact that social demands may play a role in masking autistic traits, then we have to ask a critical question.
An absence of intellectual disability would mean in theory that the same pattern of behavior would be observed in black and Hispanic children as in white children when considering an autism diagnosis. So why are the exact same behaviors that white children display interpreted as something completely different when black and Hispanic children display them? Is it possible that I went undiagnosed because a young black boy displaying autistic traits was simply considered a difficult child?
On June 5th, 1966, twelve years to the date of my birth, Dr. Martin Luther King Jr. preached a riveting sermon entitled “Guidelines for A Constructive Church.” What’s most interesting about this sermon is Dr. King’s introduction.
Following is a portion of the transcript:
“Over the last several weeks now, we’ve been reading a good deal in our newspapers about guidelines. Now this word has been applied basically to the public school systems across our nation, particularly in the South.
The Supreme Court of our nation rendered a decision back in 1954 declaring segregation in the public schools unconstitutional. And that next year in 1955 it came back stating that every school district was to integrate “with all deliberate speed.” And yet we came into 1966 with the terrible realization that only 5.2 percent of the Negro students of the South had been placed in integrated schools, which meant in substance that we haven’t made 1 percent progress a year. And if it continued at that pace it would take another ninety-six years to integrate the public schools of the South.”
Dr. King is speaking about the length of time that it took to gain one percent progress toward the desegregation of schools. This sermon took place twelve years before I was born and twelve years after the supreme court ruling that segregation of schools was unconstitutional. Twelve years. One percent progress.
How does this relate to autism?
When examining the newest diagnostic data, one can’t help but wonder why there continues to be diagnostic disparities in the autism community. In 1966 the pace of equality and equity as it related to desegregation was only one percent. What is the pace of equality and equity for autistic children of color in 2020?
Later in the same sermon Dr. King makes a significant point that sheds some light on the continual inequities that plague our country, even within the autism community:
“The church is called to set free those that are captive to set free those that are victims of the slavery of segregation and discrimination, those who are caught up in the slavery of fear and prejudice.”
I think the reason desegregation moved so slowly and the reason that diagnostic disparities exist in the autism community are in fact part of the same systemic issue. According to Dr. King, we successfully ended the slavery of unpaid labor but we have yet to end the slavery of unbiased living, unbiased laws, and unbiased love.
In all of our fighting for equality, we have yet to be able to free our nation from the bias that slavery created. When black and Hispanic children display the exact same autistic behaviors as white children, and those behaviors are interpreted as anything other than autism, this can result in effectively denying these minority children the same early intervention and support available to other ethnicities, indicating that we are still living with the residue of the prejudice and implicit bias in our society, including the identification and treatment of black and Hispanic citizens on the autism spectrum.
So where is the hope? What do we do?
First, realize that we did not choose this lens. This lens, the lens of implicit bias, is part of our history. We can choose to change how we see things. We can speed up the progress of equality by doing a few simple things.
Second, acknowledge that bias and prejudice exists. Even in our own autism community.
Third, ask questions. Why are the same behaviors interpreted differently if they come from people of color? From autism to everyday life, we tend to believe things about people based on a unintended, unconscious biases. The next time you think or feel a negative way about a group that you don’t belong to, ask yourself why.
Fourth, be accountable. We may have not collectively created the biases that exist in our community or our country, but we can work together to collectively destroy these biases. We are the shapers of our future, and this is our time to change the story for the good, forever.
Fifth, have hope. Equality seems to come slow, but when we rise to the occasion we can actually speed up the process. Have hope that when enough of us take off the lens of bias, we will come together to build something new, something better, and something more beautiful than we have ever experienced. Have hope that our legacy will be that we will leave behind something better than what was left for us.
Lamar Hardwick D. Min. is the lead pastor at Tri-Cities Church in East Point, Georgia. He writes and speaks frequently on the topic of disability, especially autism, and he is the author of the best-selling book I am Strong: The Life and Journey of an Autistic Pastor. His new book Disability and the Church: A Vision for Inclusion, is slated to release in January 2021 with InterVarsity Press.