From our vantage point in 2012 there is nearly unanimous agreement among the scientists who study autism, that it is really many diseases, and some have suggested that we call it the “autismS.” Along with the three key diagnostic signs (language and social disorder as well as a rigid adherence to sameness) are a host of medical, neurological, psychiatric and behavioral problems making the complete treatment of autism very difficult for any one practitioner. The primary care physicians have recognized this problem for autism and other diseases and have suggested what is called the ”medical home” This consists of a primary care provider with the backup of all needed specialties all under one roof or more accurately under a virtual roof, which is to say that all the practitioners work closely together.
The problem is that this has rarely if ever been put together adequately for autism. Both primary care specialists as well as parents of autistic children both agree that there is little to celebrate in the current system. Even in the rare situations when all of the medical specialties work together and even if there are adequate behavioral practitioners for a given case, the question is how to integrate with the educational system. I have observed this first hand over many years. I have been repeatedly frustrated by knowing that the child needs a behaviorist but cannot access one leaving me (a psychiatrist) to use my medications to the best of my ability but overall it is a suboptimal situation. I have heard many stories from parents concerning teachers who seemed not to know how to handle a given child. If only the teacher could receive a little more help, a whole year of learning and poor behavior could at times be averted.
Physicians and psychologists and the other specialties who work together all conceive of themselves as “treatment” professionals and perhaps for that reason there is a common vocabulary and an ability to work together when that is possible. The educational personnel and the school systems do not share that outlook. They see themselves as educators. If a child has an infectious disease or even a chronic disease (such as juvenile onset diabetes) the schools role is to educate, not to “treat.” With autism as well as with the other brain-centered developmental disorders, one of the primary problems if not the most severe problem is the learning disability involved. Examining the issue practically, the school system and the teachers can realistically be said to be the most important treatment professionals for many of the cases. To improve the outcome of autism we need to improve the school’s effectiveness.
Proposing a Medical Home Within the School Building
One way to improve the effectiveness of the teachers is simply to give more training and support. However, with the multiplicity of problems autistic children present with, both behaviorally and medically, this will only help up to a point. What is needed is the multi-specialty “medical home” to be working closely with the teachers. What I am proposing is that the medical home actually be housed in the school and along with this the school and the teachers become a part of the medical home.
Teachers spend five hours per day, five days a week with the students and other than the child’s parents, nobody including all of the treatment professionals has a better understanding of the child’s needs and issues. In the traditional medical model, treatments are prescribed and after a period of time the outcome is evaluated. Then there is an office visit for follow up which in reality is often no more than 12-20 minutes. Most of that time is taken up with communicating the outcome of the intervention although if new problems occur, it may even push out the time for evaluating the previous interventions. Having a teacher as part of the treatment team and having the treatment team physically in the location where the student and teacher are can therefore facilitate a much greater efficiency. More in depth assessment can take place on a day-to-day basis and regular feedback becomes possible. Perhaps the greatest advantage is that those issues which are preventing or slowing down learning can be addressed by the other professionals according to their expertise. For example if a behavior problem is hampering learning, having a behaviorist and or a psychiatrist observe this first hand can lead to interventions with much more frequent adjustments and re-evaluations. If a child appears to have a medically-based problem (for example, headaches or gastro-intestinal problems), the primary care physician can have the direct feedback on the success of their treatments. Better medical and behavioral treatment by itself will lead to better learning. Psychiatric medications can help with behaviors; however, a question which is rarely studied is, “What effect do they have on learning?” There is little if any understanding of the role medications play in helping or hurting the ability to learn. Psychiatrists lack the tools to be able to measure this. Teachers however have those tools. By measuring learning acquisition rates, we can obtain powerful information to guide the use of the medications, thus improving the effectiveness of the psychiatrist.
The science of learning is a field which is in its infancy. Neuroscientists have just recently come to understand some of the basic issues of how humans pay attention, absorb, process, and retain information and are able to produce that knowledge in the context of their lives. New treatments for learning problems are possible. One of the stumbling blocks for the creation of how to evaluate the new treatment is how to measure the success. For Alzheimer’s disorder we assume a body of knowledge and test the person’s ability to demonstrate that information such as knowing the date, and repeating back strings of words or numbers. For the developmental disabilities, every child has a dramatically unique level of cognitive functioning. To measure success, there will need to be sophisticated and individualized measures available. I believe this will only be possible (for the foreseeable future) through the direct measurement of learning and will need to be coordinated with the learning which is going on in the schools.
One might ask, “If the advantages of this are so clear, why aren’t these school-based programs already in existence?” The answer I believe is the administrative systems which are already in place find this challenging. Putting treatment professionals in the schools system takes the educational system (as well as the medical professionals) out of a comfort zone. The schools are paid for through local taxes and run on tight budgets, altering procedures often requires time and money. Medical services are paid for by governmental or private insurers or directly out of pocket by the families. Governmental regulators of the schools and school principals have little experience in evaluating medical programs and the same is true for medical regulators. So is this idea possible?
There is a good model for this type of program. There is a program which already has the “medical home” in the schools and it is known as the School Based Health Centers. Physicians, social workers, psychologists and nurses are all present inside the schools and provide comprehensive primary care. There are about 2,000 of these programs in existence nationally. Originally conceived to tackle the issue of the lack of medical access for teenagers who were HIV positive, the program has grown in many directions and now includes mental health most commonly aimed at substance abuse by teens. While there are School Based Health Centers in Special Educational Settings, I have not seen this implemented in a comprehensive, multidisciplinary way for autism and the developmental disabilities.
If there is a School Based Health Center or school district in the NY Metropolitan area which would be interested in creating this type of program, please contact me at firstname.lastname@example.org.