Boom! The “Autism Bomb” explodes. Like many children with regressive autism I lost functional communication, had tantrums, engaged in self-stimulatory and abusive behaviors beginning at 18 months. Others are affected earlier and mothers may report that their child was “different” even before birth. Life was never the same again from me, nor for others supporting me.
It was the mid 1960’s and there was very little information about this seemingly psychiatric condition that affected only 1 in 10,000 people and was tantamount to a life sentence of dependency. Possibly, with luck and much effort, adulthood in a group home and employment in a sheltered workshop could become reality. My parents were told to put their “sick” child in an institution and to get on with their lives.
Fortunately, my parents advocated on my behalf, and implemented what would today be best described as a home-based intensive early intervention program emphasizing music, movement, sensory integration, narration, and imitation. Done at a time when the term “early intervention” hadn’t even been developed, their work closely aligned with developmental-cognitive or affective approaches such as the Miller Method or DIR. Does that discount the behaviorally oriented or other approaches for children with autism? No. It just means that my parents were able to provide for my needs and did what was best for me at that time.
Grade school, especially at the elementary level, was very difficult. However, I did graduate. In fact, I made it through higher education and have recently completed my doctoral dissertation on matching best practice to the needs of children on the autism spectrum. I have been married for 18 years and live a fulfilling, productive, and interdependent life. Not an independent life, because only hermits live without appropriately depending on others for their needs.
Different Strokes for Different Folks
When I was diagnosed in 1964 the amount of material written about autism could fit in a single bookshelf and was restricted to “highly qualified” medical professionals. There was no alphabet soup of ABA, DIR, DLT, MM, RDI, or SCERTS, which makes up just a small piece of what there is available today. A recent search for “autism” on Google.com now brings 24,600,000 hits. The challenge now is to sort out appropriate information that best matches the needs of the person with autism you are supporting.
More than ever there are myriad intervention, approaches, and techniques for working with people on the autism spectrum. Stephen Edelson, Executive Director of the Autism Research Institute (www.autism.com) suggests that children with autism need treatment in three main areas of interventions, including: educational/behavioral/developmental, bio-medical, and sensory integration. Then there are other supporting techniques such as Powercards, Picture Exchange Systems, assistive communication devices, etc., not to mention all the bio-medical interventions that are available.
Matching Best Practice to Individual Needs
One of my special or focused interests (termed “restricted” by the DSM IV) is comparing educational/behavioral/developmental approaches for working with children on the autism spectrum. As I began my literature search on different methods I found there to be no such research, possibly due to a combination of practical and political reasons.
Practically, finding matched groups of children with autism to accommodate a study spanning several approaches, as well as finding the needed control groups is problematic at best. Even if several dozen matched children could be located there would be the challenge of controlling for variables such therapist experience and efficacy, home life, exposure to previous interventions, and biomedical issues. Additionally, there are ethical or moral concerns concerning withholding intervention from a population in desperate need of support.
The second reason is that I have found that many practitioners of certain approaches get locked into their methodologies to the exclusion of others and to the detriment of people on the autism spectrum. The diverse nature of the autism spectrum indicates that different people will have different needs in terms of intervention. It is not a one size fits all situation. No one person or approach has all the answers.
Since I was unable to find work done in this area, I felt that the best way to open the line of research into comparative approaches was to gather more information by finding out how leading theorists and developers of today’s promising approaches think about children with autism.
The approaches chosen to study were Applied Behavioral Analysis (ABA), the Treatment and Education of Autistic and related Communication handicapped Children (TEACCH), Daily Life Therapy (DLT), the Miller Method (MM), and Developmental Individual-difference Relationships-based intervention (DIR), which is often referred to as Floortime. Although there are many are approaches worthy of studying, my dissertation had to be finished within my lifetime.
We are in a unique moment in time. The diagnosis of autism has been around for about 6 decades. As a result, most of the people involved in the initial work of developing these promising approaches remain available for interview, and in most cases, are continuing to work in this area. Although I never thought it possible, the key developers of these approaches were willing to answer an e-mailed survey and submit to a 60-minute taped interview where they answered questions on areas such as defining autism, explaining and developing interventions to address challenging behaviors, their intellectual histories, and where they saw the greatest gaps in research. Below are some of the results and findings of my research in the area of relating definition of autism to practice of determining appropriate intervention.
Part of what makes autism such a challenge lies in how the condition is defined. All of the persons interviewed for my study agreed that the characteristics listed in the DSM IV-TR do not accurately and fully describe the autism spectrum. Moreover, none of the people I talked to could agree on a common definition for autism. This lack of agreement suggests that we continue to place more and more people into the concept of “autism spectrum” to the point where there is such great diversity that the term has become almost useless.
Some of the persons I talked to recommended factoring groups of characteristics for better sub-typing of children and adults with autism and therefore better matching diagnosis with treatment. For example, a diagnosis of Type II diabetes engenders specific treatment involving exercise, diet, and possible injections to maintain proper blood sugar. However, the autism spectrum is so general at this point that it’s impossible to generate specific interventions from the diagnosis. Like with diabetes, better sub-typing of children with autism will help match diagnosis to intervention.
An Example of Sub-typing in Autism
The good news is that some of the theorist/developers of these approaches have begun to place children with autism into specific groups. For example Arnold Miller, who has spent over 40 years developing his approach, has parsed out children with autism into two major categories. Closed System Disorder is one of the sub-types and is probably the most familiar. According to Arnold Miller, this is a child who may get over-involved in routines, may insist that all doors be closed, for example, and requires much attention paid to transitions to avoid a meltdown or tantrum when changing activities. The other category, System Forming Disorder, refers to a child who seems to have hyperactivity and “orients to all salient stimuli in the environment, but engages with none” (Personal communication, Arnold Miller, July, 1999). For example, a child in this category would run about a room, look at a shiny object for a couple of seconds, dash over to the therapist to touch her watch, then stare at a shiny point of light reflected in a window, etc.
Serena Wieder, who co-developed DIR with Stanley Greenspan, has developed four major categories of children on the autism spectrum. Like with the Miller Method, practitioners of DIR are better able to match their pool of intervention techniques to the needs of the children on the autism spectrum.
We are at a point in time where there is an explosion of methods, approaches, and techniques for working with children on the autism spectrum. The diversity of the autism spectrum, as currently conceived, suggests the importance of customizing intervention to the needs of a particular person with autism. One important step towards this customization will be to sub-type diagnoses within the autism spectrum and thus better match diagnosis to specific intervention as is shown by the work of Arnold Miller in the Miller Method and Serena Wieder of DIR. It is my hope that the characteristics defining autism in the upcoming DSM V and other diagnostic references will fulfill this need.
Stephen M. Shore, EdD, is the Executive Director of Autism Spectrum Disorder Consulting. An internationally known author, consultant, and presenter on issues related to the autism spectrum, he serves on the Board of Directors for the Autism Society of America and is on the Board of Directors for the Asperger’s Association of New England. Please visit his website: www.autismasperger.net.