Autism Spectrum Disorder: Our Evolving Understanding -

Disease description is extremely important because it guides the diagnosis and potential treatment or management. For autism, the definition has evolved over six decades as captured in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the diagnostic manual used by mental health professionals for diagnosis and classification of medical conditions in the United States. The classification determines if insurance will cover the treatment and to what extent.

In 1943, the first person to formally identify autism was Australian-American psychiatrist and physician Leo Kanner. He made three key observations about children with autism:

They exhibited extreme social withdrawal or “autistic aloneness”
They displayed delayed echolalia (the repetition of words or phrases)
They showed an anxious, obsessive desire for sameness or routines

However, Kanner observed that some of the children displayed high intelligence and had extraordinary memory. Based on these findings, he considered autism an emotional disturbance that did not affect cognitive abilities. As a result, the second edition of DSM-II, published in 1968, classified autism as a form of childhood schizophrenia, characterized by a detachment from reality.

Several other autism myths exist within Black community which, according to Elevate Black Health founder, Stephen Earley Jordan, “hinder awareness, acceptance, and even access to proper diagnosis and resources”.

The evolution of autism definition and diagnosis

From the 1950s to the early 2000s, our understanding of autism continued to evolve. For example, in the 1950s and 1960s, it was believed that autism was linked to unemotional mothers.

The concept persisted until the 1970s when it was disproven, following improved research that demonstrated autism was linked to problems with brain development. By 1980, the third edition of DSM-III was published and autism was established as a distinct disorder with its own diagnosis. It was described as a “pervasive developmental disorder”. The DSM-III was the first edition to list specific criteria for diagnosing autism, which included:

Lack of interest in people
Severe impairments in communication
Unusual responses to the environment

With the revision of DSM-III in 1987, researchers started seeing autism as a ‘spectrum’ rather than a single condition—although not explicitly mentioned in the manual. It also highlighted 16 criteria under the three previously identified domains for autism diagnosis. Out of the 16, eight must be met for diagnosis.

It was during this revision that pervasive developmental disorder-not otherwise specified (PDD-NOS) was added at the mild end of the spectrum. This addition allowed clinicians to include children who do not meet the compulsory 8 criteria for autism diagnosis but require developmental or behavioral support. The broader criteria also increased the number of Black children who could be diagnosed with autism—hence the sudden rise in the diagnosis in Black communities.

Conditions newly added to autism spectrum disorder (ASD)

In 1994, DSM-IV was released and later revised in 2000. It was the first time that autism was categorized as a spectrum. Subsequently, two conditions were added to the spectrum namely Asperger’s disorder and childhood disintegrative disorder (CDD). Before this time, only Kanner’s Syndrome and PDD-NOS were considered autism.

The International Classification of Disease manual released in the 1990s and used in many countries including the UK also groups all 5 conditions in a single “Pervasive Developmental Disorders” similar to DSM-IV.

After failing to associate autism with specific genes, experts decided to characterize autism as an all-inclusive diagnosis ranging from severe to mild. So, how do the different conditions that are now part of ASD manifest?

1. Asperger’s Syndrome

This condition was classified as a level 1 ASD in the DSM-5. Children with this condition usually have strong verbal skills and above-average intelligence but will struggle with social communication, difficulty in switching between activities, interacting with peers, or speaking in a manner that lacks feeling.

2. Childhood Disintegrative Disorder (CDD)

This condition is also called disintegrative psychosis or Heller’s syndrome. The normal development of the child suddenly stops at age three and up to ten. The condition is more common in boys (90%) than girls (10%). The child suddenly loses previously acquired skills including toileting, language or vocabulary, and motor and social skills.

The importance of early childhood care

The reason why it seems autism diagnosis is on the rise, especially in the Black community, is likely because of the current understanding that we have about the condition. Before 2000, conditions that didn’t manifest in the first 30 months of life were not considered autism. With the reclassification in DSM-5, some conditions that manifest after 30 months of life are now added to the autism spectrum.

The World Health Organization noted that evidence-based psychosocial interventions when administered timely can improve the ability of autistic children to interact socially and communicate effectively.

Nevertheless, Black families still face unique hurdles in autism diagnosis. For example, according to a study done by SPARK for Autism involving 21,000 Black and African American members, 28% noted their race or ethnicity affected their experience of getting an autism diagnosis for their child. Twenty-two percent cited racism where professionals seemed to pass off behaviors that Black children display as “a Black thing”, assumed families wanted to use their children to get money from the government or expect Black children to be wilder with behavior problems.

Getting an autism diagnosis can be challenging but you never have to do it alone. Organizations like Autism Speaks, Autism in Black, and SPARK for Autism can provide the resources and support needed to give your child a better life. You can also leverage your community for support and care.

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