The March 13 front-page article “ In assault case, anxious parents recognize ‘dark side of autism’ ” underscored a reality that haunts families like mine that are touched by autism. But it is not fear of violence. Rather, it is the demographic reality that children with autism quickly become adults with autism.
As limited as research about young children with autism is, we know even less about adolescents and adults on the autism spectrum. No one can answer the questions of parents who worry: “Will my son ever hold a job? Who will protect my daughter from predators? What will happen when I die?”
The oft-cited autism rate of 1 in 110 actually applies to children born in 1998. Today’s rate is probably higher. For example, one in 88 children in military families and one in 28 Somali children in Minnesota has autism.
In just a few years, these children will age out of special education programs. Yet our adult employment, health, social service, disability and justice systems are totally unprepared for these individuals as adults.
Let’s hope that Theresa Vargas’s grim article jolts policymakers to turn their attention to the growing numbers of adults with autism — and also to get to long-overdue answers about the causes of autism and effective interventions.
Margaret Dunkle, Washington
The writer is a senior research scientist at the health policy department at George Washington University .
Dear Mr. Larabee,
Thanks for getting back to me.
To answer your questions:
Yes, I wrote the letter.
No, I did not acquire any portion of it from other sources.
Yes, Margaret Dunkle is my real name.
No, I have not sent the letter or a similar letter to any other media or Internet forum, including a blog. It is a unique submission to the Post.
Regarding my involvement with the issue, I listed some information at the bottom of my article. Specifically, “Margaret Dunkle is a Senior Research Scientist at the Department of Health Policy at The George Washington University and has a family member with autism.”
Regarding the content and sources:
· The 1 in 110 figure for kids born in 1998 (who are now age 12 or 13) is from a 2006 CDC study of 8-year-olds. Catherine Rice (National Center on Birth Defects and Developmental Disabilities) et al., “Prevalence of Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network, United States, 2006,” MMWR (Morbidity and Mortality Weekly Report).
[The previous analogous CDC report (for children born in 1992, 6 years earlier) reported an autism rate of 1 in 149 children.]
* The 1 in 88 figures for children for in active duty military families came from a Freedom-of-Information-Act (FOIA) request by military families for December 2007 data.
· The figure of 1 in 28 Somali children having autism comes from an August 3, 2010 Senate hearing – “State of Research on Potential Environmental Health Factors with Autism and Related Neurodevelopment Disorders” – chaired by Senator Amy Klobuchar (D-Minnesota), of the Subcommittee on Children’s Health, Committee on Environment and Public Works.
The question you asked – Why would the Somali children have such a high rate? – is exactly the right question. No one has a good answer. In fact, a major reason Senator Klobuchar held the hearing was to get closer to an answer to that very question. I believe that, since the hearing last August, a study of Somali children in Minnesota has begun to research this.
[About 88-89 minutes into the webcast of the hearing, you can find some discussion of these issues as well as the specific figure I quoted in my letter.]
* To further illustrate that the autism rates are high and growing: unpublished data from the LA County Department of Public Health indicate a 1 in 70 rate.
You asked about my involvement with this subject area. Several aspects of my current work specifically involve autism and related issues. For example:
* The American Academy of Pediatrics honored me with the Dale Richmond Award for outstanding work in the field of child development in 2004.
* I founded and serve as Director of the Early Identification and Intervention Collaborative for Los Angeles County (which focuses on early developmental screening and effective early intervention for young children).
I became involved with early screening for disabilities and developmental delays because early intervention for kids with all types of disabilities is the best way to also identify and help kids with autism early on, when intervention can do the most good. And it also identifies kids with other developmental issues so that they can get early intervention. A win-win.
* I chaired the Public Policy Subcommittee to develop the now-approved strategic plan to create a new George Washington University Autism Institute for Research, Treatment d Policy.
* I conceived of and continue to consult with an innovative and promising project to do high-quality developmental screening over-the-phone through 211, the Health and Human Services Information Helpline that more than 80% of communities across the country now have. (Developmental screening identifies “red flags” for all areas of child development, from gross and fine motor, to speech, cognitive abilities, and social-emotional development.) As a part of this project, we are (also over the phone) giving kids with “failed” developmental screens the MCHAT (which specifically screens for autism).
Your edits in the version below look fine.
Should you have further questions, I’m reachable by my cell number below Wednesday a.m. And I’ll be back in DC later in the day on Wednesday, at the 202 number below.
Address: 3737 Military Road, NW, Washington, DC 20015
Senior Research Scientist, Department of Health Policy, The George Washington University and
Director, Early Identification & Intervention Collaborative for Los Angeles County
310-441-2345 Cellphone: Note: 310, not 301