Why should we care?
In the last decade of medical practice, I have stumbled across a number of fundamental truths about health, health care, and the human condition. These truths were not covered in my anatomy classes or textbooks, but came to light as a result of my own experiences and reflections.
One of these truths is based on a quote by Dostoevsky, who wrote "You can judge a society by how well it treats its prisoners." My "truth" is, "You can judge a health care system by how well it treats its most vulnerable patients." Autism, a condition now thought to affect 1 in 88 children, affects many such vulnerable people.
So why should we think about health care by looking at the challenges that people with autism face? Part of the reason is that these are challenges that we all may face, and by addressing them we can seek to improve health care for everyone.
Health and Wellness vs. Medical Illness
Medical practice and training has long focused on the treatment of medical illness -- the use of medicines and procedures to rectify what has gone wrong with a human body. Health, however, is far more than the absence of disease, it is also, according to the World Health Organization (WHO), a state of complete physical, mental, and social well-being. People with autism experience many barriers to achieving this definition of health.
Some people with autism find it difficult to engage in regular exercise, through a combination of a lack of suitable opportunities, their own social difficulties, and stigma against them. Let me jump now to my other truth: As medical professionals we often prescribe medications but "there is no pill that can replicate the health benefits of exercise." It is not limited to exercise either, what about diet? Many people with autism also find they are particularly picky about the food that they eat, often ending up on a "yellow diet" that includes starchy or fatty foods such as fries, cheese, burgers, and pizza. What are health care systems doing to address these issues? Unfortunately far less than they could be doing.
Let us bear in mind that medical illness is often an endpoint rather than a beginning. We are pretty good at developing advanced medications to target the endpoint, but how about targeting the period of time between being healthy and having an illness such as diabetes? After all, you don't wake up as a diabetic having fallen asleep perfectly healthy. Emotional wellbeing is also very important -- and proactive wellness initiatives such as The Clays Center for Healthy Minds is a useful resource. Wellness must become a priority -- with prevention rather than a cure being the primary goal.
Research, vital but slow
Medical research, like clinical practice, continues to be geared up toward studying illness rather than wellness. We continue to spend large amounts of money trying to uncover the genetics behind autism, or develop new ways to understand the brain. For many people with autism and their families, they simply cannot wait a decade for the results, and early intervention is crucial. I am therefore not surprised that many are turning to alternative and complementary interventions. These interventions range from vitamins, or particular diets, to some more debatable practices. Many families are also wary of vaccinations, with a movement that believes they are linked to autism. We should bear in mind that many of these families are desperate for answers, and willing to consider options that have not been fully researched.
A Mind-Body reunion
Our health care systems have, in my opinion, erroneously separated out mental health conditions ("the mind") and medical conditions ("the body") as if they exist in isolation from one another. I could quote a thousand research papers that demonstrate a connection between the mind and the body, but I believe the existence of the human neck is evidence enough. Our health care systems must learn to integrate mental and physical health care. People with autism often have a complex combination of mind-body problems, with conditions such as anxiety, attention deficient hyperactivity disorder, seizures, and gastrointestinal disturbances being particularly common. In this regard health care is slowly changing with the growth of integrative medicine and integrated care.
Adolescence, please mind the health care gap.
Adolescence is a tough time for many reasons. Dealing with parents that don't understand you, the raging hormones, the feeling that you must fit in. Now, throw in the challenges that come with autism, like difficulty expressing and reading emotions, communicating with others, and a higher risk of being bullied.
Unfortunately, many adolescents with autism find that they are "aging out" of services for children. Often families are left trying to find another health care professional, care becomes fragmented, records have to be requested, and waiting lists endured. Few physicians feel confident treating these young adults with autism. Autism has long been viewed as a condition of childhood, when in fact it is a condition that is diagnosed in childhood but lasts a lifetime. Unfortunately medical and behavioral services are very limited for many adolescents and adults with autism.
Furthermore, it appears that adolescents without autism are also getting a raw deal, according to an Institute of Medicine Report. The report identifies a lack of consistent suitable training for health care professionals, and a sense of unpreparedness among professionals, in meeting the health needs of adolescents. Particular areas of concern of concern are mental health, sexual health/pregnancy, recreational drug use, and oral health.
Obtaining Services, "the squeaky wheel gets the grease"
People with autism often benefit greatly from having a range of services, ranging from occupational, speech, physical, and behavioral therapies. The autism community and health care providers have really had an uphill battle in getting these crucial services supported by the state medical services and approved through private insurers. In my personal experience, I have found that the more a service was related to the child's psychological or behavioral needs, the more difficult it was to get covered. Families would often have to fight tooth and nail for their child to get help. While results have varied from person to person and state to state -- the Affordable Care Act has offered some hope. No longer can conditions such as autism be excluded as a pre-existing condition, and children should, in theory, have behavioral services included as part of their health insurance package. Children can also stay on their parent's plans until the age of 26.
I believe that treatment for people with autism is seen as an expense by many, when in reality it is an investment. I have seen what happens when people with severe autism have never been able to obtain treatment, and I can assure you the results are extremely distressing.
Primary Care -- essential and in need of resuscitation
Before I discuss primary care, I want to emphasize that many individuals make up a health care system. Nurses, therapists, administrators, and physicians, are all essential members of our medical teams. That being said, I cannot count the number of times that, as a psychiatrist, I have asked a patient or a family about their primary care doctor only to be met with a blank stare.
Out in the community and close to patients are this group of doctors that include pediatricians, family physicians, and internal medicine doctors. It can however be hard to find one, especially if you live in a rural area, or are on Medicaid -- like half of children with autism.
Providing early diagnosis, treatment, and referral for conditions such as autism are essential roles of these community physicians. Having an orthopedic surgeon, a psychiatrist, or a rheumatologist as the doctor at the helm of a person's total medical care just isn't going to cut it. If people with autism are struggling to find a primary care physician, it won't be long before people without autism find themselves in a similar situation.
Unfortunately we are short of about 7,000 primary care doctors, rising to 45,000 over the next decade. Many primary care doctors in current practice are due to retire, and increasing numbers are opting out of government-run health programs. A very concerning fact given 30 million Americans are becoming newly insured under the Affordable Care Act. .
Children's specialists also under threat
So what happens if a family wants to see an autism specialist? Currently demand dramatically exceeds supply. People often resort to paying out of pocket, recognizing that early intervention is of utmost importance in autism. More autism specialists are not simply going to appear tomorrow, it takes at least five years of residency training after medical school to train a child and adolescent psychiatrist, pediatric neurologist, or developmental pediatrician. Let me give you an example of how dire the situation is, there are only 7,500 child psychiatrists in the country for 74 million children and adolescents. And it only looks like the situation is going to get far worse. Unfortunately we are proposing $11 billion dollars of cuts to residency training programs, with the hardest hit programs being those that are not intervention based. Oh wait! Isn't that primary care, child psychiatry, pediatric neurology, and developmental pediatrics? What about other doctors, nurses, and therapists -- can we train them to understand people with autism? Sorry! They will also be too busy trying to achieve the basics of their training as they too are going to be hit with the budget cuts.
The End? Well not quite yet.
I have only described a handful of the challenges that people with autism face, but we can apply these issues to the wider population. Health care is changing, with accompanying opportunities and risks. Health care systems must be rewarded for placing their focus on wellness, prevention, and accessibility to the communities they serve. Similarly, the integration of mental and physical health resources must not just be an idea, but needs to be made a reality, and one that is present in our communities. Finally, cutting back funding on graduate medical education cannot come at a worse time. The $11 billion of proposed cuts will cripple our ability to train the physicians that our new health care systems will desperately need.
People with autism are by no means the only vulnerable group of patients. Many others including those who are underinsured, from minority households, or have mental health problems, all face enormous barriers to accessing health care.
My final thought is this: When health care systems are designed with the aim of ensuring the most vulnerable patients receive timely, accessible, high quality care, the result is a better, safer health care experience for every single one of us.