Molly Whalen, a District of Columbia mom with two kids on the spectrum, recently testified in favor of legislation that for the first time would require autism coverage in health insurance plans sold in the District. The DC Council votes June 4 on its new Health Benefit Exchange policies which will start operation in 2014. Here is her story:

My husband and I are Washingtonians, and have been homeowners in DC for over 22 years.  When my oldest child was diagnosed with autism, most pediatricians did not even consider discussing developmental milestones with parents of toddlers. In these last 11 years, the environment surrounding autism awareness has very much changed, and with the increase of diagnoses of autism spectrum disorders, it is imperative that it continue to change in the healthcare environment in DC. This can be done by creating a Health Exchange that has meaningful quality standards and transparency for DC’s health market.

In the mid- 2000s, the early intervention structures in DC (both Part B and Part C) failed our children. They did not receive evaluations in a timely manner, they did not receive required therapies, and the first words out of the principal when I went to enroll my oldest at her school, were “Do you have a lawyer?”  The atmosphere of both health care and the school system was horrific for DC families with children with special needs.

When the early intervention system and the schools failed to provide OT, SLT and ABA, my husband and I were able to get these necessary therapies for our children. At the time, our personal insurance would cover the OT and SLT, but at a cap of only 25 sessions a year. We would run out of this each year by February, so we paid thousands of dollars out of pocket stretching our finances perilously thin.

We had the education, finances, and ability to advocate for our children. However, what keeps me, as a parent and citizen, coming before hearings such as this is that not every parent in this city can be an advocate and fight personally and financially for their children.  What happens to the single mothers, the mothers who do not speak English, the fathers who do not have flexible work schedules, the grandparents who must choose between rent and therapy bills, when they are faced with their children’s therapy needs?

When we fought for our children, we were often told, “why don’t you move to Montgomery County or Fairfax County?”  I will tell you what I said then and now -- that Washington DC is my home, it is my husband’s home and the birthplace of my children. I will not abandon my home, because our people, insurance and city government are failing to do what is required by Federal law and what is the right thing to do to insure for quality and appropriate healthcare for all.

My husband has spent every day of the past 30 years protecting the citizens of this city as a police officer, 26 of them as a homicide detective, and is one of the most respected law enforcement officers in this city. Why should we move, why should the firefighters have to move from the city, why must our teachers move, why must the DC government employees move, why should any of us have to move, just to get quality healthcare and appropriate education for our children with special needs?

Health Care transparency will confirm that the health plans provided will offer the appropriate therapies (OT, SLT, Behavior and ABA) that are necessary for children with ASDs – and make these more affordable and accessible to all families of children with ASDs.

The new edition of psychiatry’s “bible” remains crucial for diagnosis and treatment; but it also needs constant updates with research on the underlying causes of mental disorders

Psychiatrist Herb Pardes, M.D., is the executive vice chairman for the Board of NewYork-Presbyterian Hospital. Previously he served as the hospital’s president and CEO and before that as the director of the National Institute of Mental Health, the president of the American Psychiatric Association and the dean of the Columbia University College of Physicians and Surgeons. Dr. Pardes also serves on the Board of Autism Speaks.

This has been an eventful week for the mental health community. Last Thursday brought the CDC announcement that nearly 20% of children ages 3-17 have a mental health disorder with autism landing near the top of the list. And Saturday saw the long-anticipated publication of the fifth edition the Diagnostic Statistical Manual of Mental Disorders (DSM-5), a tool that has been called psychiatry’s “bible.” Never before has its revision stirred such discussion among patient and provider groups. That concern has been deepened by reports that the director of the National Institute of Mental Health, Tom Insel, M.D., said the manual lacks “validity.”

That’s unfortunate because, in fact, Dr. Insel and others in the field – including me – embrace this manual as providing us with the most up-to-date information on diagnosing and classifying mental disorders. By giving us a common terminology, the DSM helps us pursue the kind of global research needed to transform our understanding of mental disorders. With this and every edition, we’ve also added knowledge that can improve diagnosis and treatment.

Beyond Symptoms; Research on Causes

At the same time, I understand the frustration of families struggling with autism, schizophrenia and many other brain disorders. At present, we can describe these conditions only by their symptoms. We are still struggling to understand their causes.

In fact, each of these conditions may likely result from many different factors, though each likely involve some degree of genetic predisposition. In some cases, two people can have the same gene variation. But only one develops a brain disorder. Or one person with a gene mutation develops autism, and someone with a slightly different variation in the same gene develops schizophrenia. Even individuals with the same diagnosis may have differences in both symptoms and underlying brain circuitry.

Only by understanding and distinguishing the underlying biology of brain disorders can we develop therapies that go beyond reducing symptoms to targeting a cause. Only then can we deliver “personalized medicine.”

This is the crux of what Dr. Insel and others have been arguing: Clusters of behavioral symptoms are helpful for guiding diagnosis. But we need to focus our research on the genetics and other biological factors that cause brain disorders.

Consider the physician of 200 years ago. With great fanfare, she/he might pronounce that you suffer from, say, “fever.” He might even have a treatment to reduce your temperature. Of course, today’s doctors know to look for the root cause of the fever and address it.

Symptom-based diagnosis, once common in many areas of medicine, is being replaced – or at least complemented by – laboratory tests. Under Dr. Insel’s guidance, the NIMH is supporting research aimed at strengthening our diagnostic system for psychiatric conditions.

The Promise of Genomics and Brain Imaging

The good news is that I’ve never been more hopeful that we’re poised to deliver on biomarker-based, personalized medicine for brain disorders. Every year the cost of whole-genome sequencing drops further. Large-scale genomic research is increasingly affordable and genetic testing is becoming a standard part of clinical diagnosis.

Autism Speaks, for example, is collaborating with the Beijing Genome Institute in a historic whole-genome sequencing of 10,000 individuals in families affected by autism. Already, preliminary analysis of the first 200 genomes of this “10K Autism Genome Project” is providing information with clear usefulness in the clinical management of autism. In the future, this wealth of genomic information could guide the development of precision autism and psychiatric disorders medicines based on each individual’s genetic profile.

Beyond genetics, we’re seeing revolutionary advances in noninvasive brain imaging such as MRI and CAT scans. Technologies such as these allow us to look at differences in brain circuitry. As we deepen our understanding of these mechanisms, we will further advance our ability to develop effective, targeted therapies.

And so I join with Dr. Insel in calling for more research on the genetics and biology of brain development. In this way we will find the hidden factors beneath a broad range of brain disorders.

We must also remember that pharmaceutical companies are increasingly on the lookout for more reliable treatment targets. If we in psychiatric research can’t provide them with these targets, then pharmaceutical companies will invest their dollars elsewhere. That would be a tragedy given the prevalence of mental health disorders and their burden on our families and society.

We know that this research can more than pay for itself – by both raising quality of life and function for individuals and reducing costs to our healthcare system and society.

DSM-5 and Beyond

For now, the DSM-5 is the best tool available for clinicians diagnosing and treating mental health conditions. Ten to twenty years from now, however, I envision a DSM edition that outlines diagnosis based on genetic testing, brain scans and other laboratory tests alongside behavioral symptoms.

Like Dr. Insel, I am calling for as much federal funding as possible. I am also tremendously grateful to organizations such as Autism Speaks and the Brain and Behavior Research Foundation whose supporters are finding the money to support this research.