Special Needs Network, Inc. is the only nonprofit organization in South Los Angeles working for families affected by autism in undeserved communities. For these families, autism’s impact is especially pronounced, as many children are denied the benefits of early diagnosis and intervention due to poverty, lack of awareness, and other issues resulting from cultural and language barriers. This delayed diagnosis and intervention can mean the difference between a child who may someday live independently, and a child who is destined for a life of institutionalized care.
Our families are concerned about the implications brought on by any revision to the diagnostic criteria of autism spectrum disorders in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, specifically, that many children who are on the spectrum may be denied the critical assistance they need. Afflicted by ongoing concerns for housing, employment, and even transportation, these families depend on state services to provide the help needed to ease their daily struggles against autism.
We asked our board member, B.J. Freeman, Ph.D., Professor Emerita of Medical Psychology at UCLA School of Medicine and Founder of the UCLA Autism Evaluation Clinic, to submit recommendations that address the needs of our families for the consideration of the DSM-5 Revision Committee as they finalize the revisions. Please find her letter reproduced below:
Dear Work Group and Committee Members,
The proposed DSM-5 criteria for Autism Spectrum Disorder have caused much controversy and confusion in the field. It is important at this point to take a reasoned approach to the issue before finalizing the revisions. It is well documented that change is difficult in all fields. It is especially important when the lives of children are at stake. Dr. Geraldine Dawson, Chief Science Officer for Autism Speaks recently submitted an excellent letter raising several reasoned points for the Committee to consider before finalizing the DSM-5 revisions and for monitoring the impact of changes to the criteria for ASD.
It is also important to address the issue of inequity in diagnosis and treatment of minority children. The disparity in diagnosing autism in minorities has been brought to the forefront following recent research and documentation. Specifically, the Center for Disease Control and Prevention (CDC) recently conducted the largest study in the United States to help identify factors that might put children at risk for ASD and other developmental disabilities.
The 2012 CDC Report indicates that more children are being diagnosed at an earlier age – a growing number by 3 years of age, although most children are not diagnosed until after 4 years of age. However, the report also shows that on average minority children, specifically African-American children, are diagnosed 18 months later than non-minority (White) children. In addition, there is less likelihood that a Black or Hispanic child would receive a diagnosis of autism on their first visit to a specialist. Overall, the CDC Report showed that the largest increases in occurrence over time were among Hispanic and Black children. It is suspected that some of this was due to better screening and diagnosis. However, this finding explains only part of the increase over time, as more children were identified in all racial and ethnic groups.
Additionally, a 2012 study by Dr. Rebecca Landa of the Kennedy Krieger Institute found significant ethnic differences in the symptoms of autism in toddlers. The study shows that minority toddlers with autism are more delayed than affected Caucasian peers. Specifically, children from a minority background have more delayed language, communication and gross motor skills than Caucasian children with the disorder. While the prevalence of ASD does not differ across racial and ethnic groups, some studies have shown that children of African American, Hispanic and Asian descent are less likely to receive an early diagnosis of autism than Caucasian children. Furthermore, Dr. Landa’s study found that the toddlers in the minority group (African American, Asian and Hispanic) were significantly further behind than the non-minority group in development of language and motor skills, and showed more severe autism symptoms in their communication abilities.
These findings are especially important in light of how the DSM-5 redefines not only ASD but also Intellectual Disability (ID). In addition, a new category, Social Communication Disorder, has been added. According to the proposed DSM-5 for Intellectual Disability, if symptoms can be accounted for by an overall general delay in development, a diagnosis of SD would not be made. This potentially could be harmful particularly to minority children who are coming to attention later and with more severe symptoms. Furthermore, it is not clear how and when a diagnosis of Social Communication Disorder would be made, and how it interacts with ASD and ID diagnoses. It will be extremely important to monitor how these criteria are applied in practice to children who present with significant delays. In view of Dr. Landa’s research results, the effect of these diagnoses on minority children with autism, who already are being diagnosed late and who receive fewer services, will need to be monitored even more closely.
While DSM-5 field trials indicate that the proposed criteria work well, it would be helpful if there were clearer specifications as to how and when a diagnosis of Autism Spectrum Disorder, Intellectual Disability or Social Communication Disorder should be applied. In the past, reliance on individual clinical judgment to interpret the criteria for PDD-NOS often resulted in inconsistent application and diagnosis.
As Dr. Dawson points out, it is crucial to monitor the impact of the DSM-5 changes. Moreover, it will be important to monitor the effect that all three of these categories has on making a diagnosis of Autism Spectrum Disorder, and particularly in minorities who are less likely be diagnosed and less likely to receive appropriate services. We urge the committee to be very specific in how these terms are to be used and to monitor the impact closely with a particular emphasis on how these will affect the minority population.
B. J. Freeman, Ph.D.
Professor Emerita, UCLA School of Medicine
Department of Psychiatry and Biobehavioral Sciences
*Artwork by Patrick George