Newsletter
Volume 30 | 2007 | Number 3
Autism in the 21st Century
By Dr. Catherine Lord, University of Michigan
Never has there been so much awareness and enthusiasm for finding the causes and addressing the needs of individuals with autism spectrum disorders (ASD), as there is as we begin the twenty-first century. The resources and intensity of demands for consideration that have arisen primarily from parent-initiated efforts on a national and international level, accompanied by responses of the National Institutes of Health, have increased astronomically within the last seven years, and, if we are lucky, will continue to increase in the next years. Much of our dilemma, as professionals and as parents, is how to balance questions of how to help children and adults with ASD now versus how much should we invest in the future in terms of possible treatments and prevention strategies that may be several or more steps away. To date, much of the impetus for improvements for children and adults and families affected by ASD now have come from behavioral perspectives and organizations such as this one, as well as grass-roots agencies such as the National Autism Society, TEACCH, and local groups. The focus on changing the future and the search for cures has come both from parent-initiated organizations such as Cure Autism Now, NAAR, and now Autism Speaks as well as medical research initiatives across the world. Both points of view are invaluable and probably necessarily different in many ways. Yet one cannot help but ask if there are ways that we can better integrate, at least in some cases, research to practice, and if there are gaps that may have arisen between the two that are as important as some of the more eagerly addressed extremes of each position. Taking a minute to consider those gaps and new directions in the twenty-first century seems like a worthwhile enterprise.
One clear recent trend is to move the age of identification, diagnosis and treatment younger and younger, including children as young as 12 – 18 months. There is enormous excitement about finding children with ASD at very young ages and being able to minimize some of the likely secondary deficits produced, but not necessary, in autism, including lack of social engagement and experience. Many early intervention programs are underway or just being started. The designs of these projects build on the strengths and weaknesses of previous early intervention studies by including prospectively defined, randomly determined control groups, careful descriptions and adequate numbers of children to look at individual differences and fidelity measures so that we know not only what the researchers planned to be done in treatment, but what actually happened. Yet there is much that we do not yet understand about ASD in very young children, and care has to be taken to look honestly and realistically at early screening and diagnostic measures. Nevertheless, the opportunity to build on strengths of individual children before the differential social attention and isolation seen in many young children has had much of an effect is too great to let pass.
Yet children with ASD will be older children and adolescents for far longer than they will be under three. They will be adults for even longer. For those children who do not show the real, but relatively rare dramatic shift out of ASD that we all hope for, there are lifetimes of challenges to consider. In the last few years, research and services for school-age children, adolescents, and adults have decreased dramatically, except in areas (e.g., executive functioning, brain imaging) where complex language skills are needed for participation.
We know a great deal about teaching specific concepts and behaviors to individuals with ASD. We know about how to help these skills generalize within the same contexts to different people and places, but we know relatively little about how to make these skills belong to individuals with ASD to serve their purposes and widen their lives beyond our plans. Questions about generalization to spontaneous behaviors; how this happens, when it happens, what it happens for, with whom and why are all very open. Active ingredients for change are not understood, though there are hypotheses about them. Ways to move beyond empirical support that describe before and after to how, what, why and with whom, would allow us to better address the constant need to aim for the most useful and generalizable skills that we can.
Another issue for the twenty-first century is diversity. Almost all autism research has been carried out with middle to upper middle class families with great resources and huge energy, often with the support of university-based clinics or programs. These techniques have been disseminated widely, as this group can testify, but consideration of how one might implement well-known programs with families with less time, resources and education, who have more stresses and other demands is absolutely critical. ASD is not a disorder that is limited to the privileged or the competent. It should not be a disorder for which parents are expected to find treatments and fight for services every step of the way. Understanding how the practice of well-established behavioral principles can be used with a greater range of families and circumstances is a goal for this century.
On the whole, behavioral practices and treatments have had broader and more careful dissemination than any other form of psychological intervention, yet, in visiting classrooms, at least in Michigan, one’s first thought is that we need more training and more funds to support use of existing knowledge, as much as generation of more. The dissemination of major principles of intervention and education with youth with ASD should be a critical focus of this century. There is so much we know that doesn’t get used because teachers have not heard of it. Clearly there is a vicious cycle with funding, because better dissemination, as occurred with results of ABA interventions circulated in the 80’s, leads to more adamant advocacy, but also better funding would support training and resources that would allow teachers the opportunity to use what they know.
For the future, tantalizing but not yet solid findings in genetics continue to hold out the hope of a better specification of the biological underpinnings of ASDs, but also remind us of the likelihood that we are talking about ASDs, not a single disorder with a single cause. New technology in studies of brain function draws our attention not just to differences in processing in different regions of the brain, but of possible differences in connectivity. Use of animal models now seems more appropriate than ten years ago, though credible neurobiological hypotheses of the origins or risks for autism still remain few. Convergence across levels of neurobiology from brain chemistry to electrophysiology to structure, such as head circumference, would allow testing of hypotheses from multiple points of view, a critical factor that might speed up interpretation of these findings so that the future does not feel so far away.
Larger, more carefully described samples will allow consideration of individual differences, which were often lost as researchers not surprisingly looked for the strongest effects. Larger samples will allow more acknowledgement of comorbidity with language disorders, other cognitive deficits, OCD and hyperactivity, that may give us important insights into what is and what is not ASD. North America’s long history of volunteerism, and the willingness of parents and individuals with ASD, to put up with blood draws and endless interviews and assessments is a huge advantage in the seeking of these samples and more useful research.
Finally, we are left with mysteries, including regression, repetitive behaviors, and the relationship between ASD and motor development, issues which we have very little understanding of. Where does ASD end and mild eccentricity begin; what are the factors, besides good language and nonverbal problem-solving skills, that determine response to intervention and improvement even with minimal intervention?
All these are questions (and some answers) for our new century. Trying to balance how to help individuals NOW with how to build broader and bolder ways of changing the FUTURE is a complex task. In the end, it will be the families, the individuals with ASD, their teachers and their therapists who will make these decisions. As researchers and clinicians, we need to remember that future efforts may be more broadly successful, but not forget the children and adults and families who are with us now.