Current Issues in the Treatment of Autism
Stanley L. Swartz
California State University (USA)
Universidad Autonoma de Baja California (Mexico)
Introduction
I do not consider myself an autism spokesman so the critical issues that I will speak to are those that have become apparent to me in my professional work. There are three important components of this work that I would like to reflect on today.
First, is my work as a teacher trainer. As a Professor of Special Education I participate in the program through which special education teachers earn their teaching credential. I have done this now for more than thirty years. I have provided this training throughout the United States and in a number of other countries and I have found the issues to be basically the same. The training we provide for teachers is not specific to working with autism and therefore most special education teachers are unable to meet this challenge.
Second, is my professional development group that provides specialized inservice training for teachers and therapists. Practicing teachers need ongoing professional development and very specific training in methods appropriate for working with children with autism. This training must go beyond behavioral, social and communication needs and include appropriate teaching methods for academic achievement. In addition, many regular teachers are reluctant to work with children with autism and this attitude results in reduced opportunities for inclusion or access to the general curriculum.
And third, is my program of direct service to children and parents that provides in-home support. In addition to the individualized program provided to each child, the program also provides training to parents and families of the children participating in the program. I am continually reminded in this work that there is often a disconnect between the services we provide and the need for support expressed by parents. We need to help the general education teacher structure their classroom in a way that allows for the inclusion of children with autism.
Progress of autism as a disability
We cannot think about autism today without some attention to the dramatic increase in the number of children who now have this diagnosis. Something is clearly going on that should probably be called an epidemic. Even after we control for better diagnosis and understanding of the disorder, the numbers are staggering. These numbers from California help illustrate my point.
This is a tremendous increase and one that we are not prepared to handle either with financial or human resources. We are not able to keep up and many children are either underserved or not served at all. We have school programs but not enough qualified teachers and we do not have enough social and recreational programs available to support children and their parents after school hours. Once children become adults the picture is even bleaker. There is literally nothing available for them.
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I have said for many years that autism was a orphan disability. And by that I meant, no one took responsibility for it. Research dollars have been inadequate and parents were left, in many cases, to search out treatment for their children themselves. But this situation has changed dramatically in the past few years. Autism has received a great deal of attention in both broadcast and print media. On the face of it, this should be a good thing. But I want to share with you some of my concerns that have accompanied this new celebrity status.
During the past few months in the United States there has been major coverage on autism on both local and national television. One national broadcast provided an extensive look at the autism spectrum disorder (accurate) and various treatments (not so accurate). The problem with their information on treatment was that they showed a wide variety treatments but in no way evaluated their appropriateness or effectiveness. It was though all treatments were equal and parents should find the one that works for them. Now this is unfortunate because we do have an extensive body of research that has identified the most promising practices for the treatment of autism. The side effect of this kind of information is that parents are left on their own to search out programs and services. This literally causes parents to be shoppers in a marketplace of conflicting information and, in my opinion, they are quite vulnerable as consumers. I would like to give a few recent examples of what I have run into with the parents I have worked with. Let me start with what I consider the most extreme. I was asked by one parent about my opinion on “urine therapy”. A physician had recommended that the child drink his own urine to compensate for some mysterious metabolic problem. The urine had to go through twice to solve this problem. You can imagine my response. I have been asked about swimming with dolphins as a miracle cure. Parents have been persuaded that what they really have are “indigo children” rather than autistic children. This is a description about indigo children that I retrieved from the Internet and I must say it boggles my mind.
The term "Indigo Child" comes from psychic and synesthesiac (someone in whom one simulation evokes the sensation of another) Nancy Ann Tappe, who classified people's personalities according to the hue of their auras.
According to Tappe,
The Indigo phenomenon has been recognized as one of the most exciting changes in human nature ever documented in society. The Indigo label describes the energy pattern of human behavior which exists in over 95% of the children born in the last 10 years … This phenomena is happening globally and eventually the Indigos will replace all other colors. As small children, Indigo’s are easy to recognize by their unusually large, clear eyes. Extremely bright, precocious children with an amazing memory and a strong desire to live instinctively, these children of the next millennium are sensitive, gifted souls with an evolved consciousness who have come here to help change the vibrations of our lives and create one land, one globe and one species. They are our bridge to the future.
In some quarters it has been suggested that many children diagnosed as autistic have been mislabeled and are in fact, Indigo children. They are here to help change the world and when this happens they will fit in. There is no science behind this and in my opinion, prays on the hopes of parents that autism can be escaped. No one is served by this kind of misinformation and, in fact, the hard work that will be necessary to raise an autistic child will be delayed.
Another symptom of this new attention is a commercial web site that is now up and running. This is clearly a profit making venture and I have been surprised by much of what I see on this site. Everything offered is for a fee including the opportunity to chat with experts in the field. For those parents who consider me an expert, I am certainly available to speak with them at no charge. Someone is clearly trying to make money on autism. I am sure that we can count on a proliferation of this kind of activity.
This new-found attention to autism and the increased funding available has brought out what I call the lunatic fringe; people who claim dramatic effect and promise miracle cures. Parents who are very determined to find the best treatment for their child are at the same time very vulnerable to claims made by various professionals. I have often said that if I recommended that parents hang their child upside down by their heels each night and give them a scientific-sounding reason for doing this, there are many who would probably do it. This level of trust from parents should be handled very carefully and not abused. So my advice to both parents and professionals alike has always been, that if it looks peculiar, it probably is peculiar. The best I can tell the parents I work with is that there is no cure for autism, your child is unique, will be difficult and make a dramatic impact on your life and on your family, and will need a tremendous amount of support. The best we can offer is to be your partner in what will be very hard work.
Training
In California, and in many of the United States, special education teachers are trained to work with a wide variety of disabilities. Many training programs differentiate between children with mild and severe disabilities but very few are specific to a single disability with the exception of visual, hearing, and physical disabilities. Programs that train teachers to work with children with autism are very rare. Most of the special education programs provide very good training in behavioral management strategies but provide much much less attention to academic achievement. This singular focus on behavior has a very negative effect on the likelihood that children with autism can be included in general classrooms and participate in the general curriculum.
We also provide training that is not aligned with general education. We define special education as different than general education and use mostly different teaching methods. Now this would be appropriate if we had special methods that could be demonstrated as effective. Unfortunately this is not the case. So if we ask those children most confused by classroom procedures and routines to learn two separate ones, special and general, their chances at successful inclusion are dramatically reduced.
What we need and makes most sense is a partnership between special and general education teachers. An alignment of teaching methods and classroom routines would help children with autism participate more successfully with their peers. Special education teachers must accept ensuring the success of children with autism in general classrooms as one of their major goals and responsibilities. Likewise, general education teachers must consider organizing and managing their classrooms to ensure the success of children with autism as one of their responsibilities. We must expect professional practice to change to ensure the accommodation of children with autism. We still have not met the goal of providing individualized programs that match children’s needs. What we have are a menus of available services and then we try to find those that are the best match for any particular child. We know that this is inadequate but we continue to do it anyway.
The number of special education teachers we need in areas of population growth has created a personnel shortage. We are unable to train the number of teachers we need so we have resorted to placing unqualified teachers in special education classrooms. I teach the introduction to special education class on my campus and each term I ask teachers how they are employed. More than half of my class indicate that they are already special education teachers. And this is without the first course. Another sad fact is that many of these teachers have taken a special education position because it is available and fully intend to transfer to general education when a position becomes available. This is not much commitment and unlikely to result in a teacher highly motivated to be an effective special education teacher.
Another area that I have focused on for many years is training teachers to teach with special needs how to read and write. What I have learned in this effort is that most teachers do not understand the reading and writing process well enough to support the literacy learning of a child that learns in different ways. In other words, they don’t know enough about what behaviors are used by good readers to be able to support children who are struggling to read.
We have had some success in this area and I have some of these results on my web site, www.stanswartz.com. Both some of the research we have done and video clips are available here if you have a specific interest in this area. In general, we have found that children need one-to-one instruction that helps them understand how to use both phonics and comprehension as sources of information to decode and understand text. We also very explicitly teach them the reading behaviors needed to be successful readers, and those are monitoring their reading, comparing the phonics and comprehension sources of information, reading fluently, and correcting their own errors.
_____________________________
Reading Sources of Information
Phonics
Comprehension
______________________________
Reading Behaviors
Monitoring
Comparing sources of information
Fluency
Correction
____________________________________
Unfortunately, reading as well as other areas of academic achievement are put aside for many autistic children because of their various other problems. I think that this is an oversight and that the characteristics of autism and accompanying behaviors should be balanced in program plans with as much achievement as we can accomplish. Children will be excluded from educational opportunities just as readily for low academic skills as they will be for behavior problems.
Parent Needs
So what do parents of children with autism need. Much more, I’m afraid, then we are able to provide. One of the major problems in this area is that there is no coordination among the various providers of needed services. Each agency assumes responsibility for what it does and, in most cases, is completely oblivious to the work of other professionals. The schools are, of course primary amongst all who work with children with autism. But they pay little attention to the other needs. They provide for the child during the school day but have no plan for what happens after that. And some of the needs outside of this timeframe are very critical.
For many years I have tracked what parents report as their critical
needs for support.
Though this is by no means a scientific survey, I have asked the same question
of hundreds of parents. What are your needs for support that are still
not adequately addressed? Not much has changed over the years which probably
represents our failure as a profession in both understanding and providing
for their needs. I think we still design programs based on what we think
they need rather than giving full consideration to what they think they need.
Results of Parent Survey
_____________________________________
Service needs
respite
recreation/social
education program
dental
medical
Personal needs
individual counseling
support group
training
marital counseling
help with extended families
________________________________________
For the category I call service needs, respite is always on top of the list. The challenge of raising a child with autism is a full time job and can be overwhelming for many parents. Parents have great difficulty arranging respite so that they can spend time away from their child and still be secure in the knowledge that their child is appropriately cared for. Often personnel available to provide respite have very little if any training in autism. They also report that very few social or recreational opportunities are available. The groups that provide for these kinds of programs are not typically prepared to include a child with autism. All of the parents I work have an educational program but they feel the need for support to participate in how the programs are designed. Most continue to have some suspicion that the schools only do what they have to and are not really interested in parent participation. They say “the schools want me to show up but I don’t think they really care about my opinion”. They also report difficulty finding dentists who are willing to treat their children and physicians that have any understanding of autism. I have worked with physicians in training and find that little information is provided to them about the autism spectrum disorder. This is a particular problem in that they are usually the professional who sees them first.
In the category I call personal needs, both individual and marital counseling are reported. The stress of having an autistic child on both the individual and the couple cannot be overestimated. Autism continues to be, for the most part, the mother’s problem. Engaged fathers are uncommon and the resultant impact on the marriage is readily apparent. Parents also asked to be trained. They want to be part of the treatment not just an observer. And we all know that this will be absolutely necessary if we are to be successful. Without the active participation of the parents, the various programs that we provide will only impact isolated segments of the child’s life. And last on this list is the impact this child has on the extended family. The parents I work with report their own parents as a source of conflict because of the autistic child. Their parents don’t understand autism and frequently disapprove of how the child is handled. We have done numerous workshops for the extended family and find that this problem can be reduced if the extended family is included and their level of involvement is not ignored as part of the overall picture.
Treatment
In the area of treatment, including what we do in the schools and other programs, I continue to be frustrated by the compartmentalization of services. Schools worry about the school day leaving parents on their own for the rest of the day. Other agencies provide services but make few attempts to coordinate what they do with the school as primary provider. Most of this service is programming provided by professionals with no concern about the ability or willingness of parents to work with their children using similar methods. How effective can a school program really be if the teaching methods used are inconsistent with what happens to the child the rest of the day? Can a program of applied behavior analysis in a classroom be effective if the home environment is chaotic? Are treatment methods that are so sophisticated that parents are unable or unwilling to use them likely to have the desired impact?
What I have always considered important in this regard is an article written by Wolf in the late 1970s. What he said was that the treatments must be effective but they must also be socially valid. To be socially valid a method needs to consider the very important issues of who really can use it. For our work with autism I think that whether parents can use our treatment methods to be of primary importance.
______________________________
Social Validity
Feasibility
Would you be able to use?
Desirability
Would you be willing to use
Effectiveness
Reduce problem behavior to an
acceptable level
Make a difference in lifestyle?
____________________________
The three concepts of social validity identified by Wolf (1978) were, feasibility - are we able to use the strategy?; desirability – are we willing to use the strategy?; and effectiveness – does the strategy make a real difference for the individual? In other words, we need treatment strategies that both parents and teachers are able and willing to use and that make a real difference for the individual and their opportunities to participate in school and in the community.
Now many of us here today are university types. We do research and we try to identify effective methods of education and treatment. But what I think we frequently lose sight of is whether what we do can be replicated. Can anyone use our work except those we specifically train? Is the typical teacher capable of using our methods? And more importantly, can parents use the same methods in the home and community that we use in the classroom and clinic? It seems to me that our challenge is to ensure consistent treatment across classroom, home, and community environments. To be able to do this we need methods that are not only effective but that are also feasible and desirable. I think the acid test should be whether our methods can be use by parents in the kitchen, in a restaurant, or on a community outing.
This perspective is what brought my group to positive behavior support (PBS) (Carr, Horned & Turnbull, 1999) as an approach for treatment that can be used by professionals and parents alike. In much of my earlier work I provided the following summary of this approach and why it is a good fit for working with children with autism:
1. PBS meets the various social validity criteria in most cases and facilitates inclusion of children with disabilities. Unlike traditional behavior management, which views the individual as the sole problem and seeks to “fix” him or her by quickly eliminating the challenging behavior, PBS views such things as settings and lack of skill as parts of the “problem” and works to change those. As such, PBS is characterized as a long-term approach to reducing inappropriate behavior by teaching a more appropriate behavior, and providing the necessary contextual supports.
2. PBS supports learning new behaviors that not only help the child in the immediate environment, or the short term, the behaviors we teach must also be important for their life after school, or the long term.
3. PBS is appropriate choice because of its good fit with a family environment. Parents are able to work with their children using techniques that are effective and at the same time part of a normal pattern of interaction. From the perspective of the school, PBS is a good match because of its suitability for use in inclusive settings and because it is primarily a teaching method.
It is my opinion that optimal programs for children with autism will need to use methods that can be employed by all who have contact with them. It is clear to me that methods that are too complex or are only a good fit for particular environments will not have the long term impact that those that can be applied anywhere will have. This only makes good sense to me.
Conclusions
This is an exciting time in the field of autism. One that has both tremendous opportunity and at the same time is fraught with danger. The opportunities come from the increased attention to autism and that we know more about effective treatments. The dangers are those who think that children with autism are experimental subjects.
For parents I say beware of those who peddle false hopes and miracle cures. No one in the profession would deny or fail to embrace a cure for autism if there was one. There isn’t. What we have is a complex disorder that requires long term treatment. Things that are too good to be true are too good to be true.
To my colleagues who train special education teachers, I think we can do a better job. For the most part our training is still a set of disjointed coursework. Each of us teaches our little part and no one is ensuring that our training all comes together.
And last, and most important, is that all that we do for children with autism needs to be coordinated. Schools can’t operate in isolation from the needs that parents have at home and in the community. Methods need to be employed in classrooms and clinics that the most important person, the parent, can use with success. Just because we can demonstrate that something will work isn’t good enough.
References
Carr, E.G., Horner, R.H., & Turnbull, A.P. (1999). Positive behavior support for people with developmental disabilities. Washington, DC: American Association on Mental Retardation.
Swartz, S.L. (2005). Autism/Autismo. Mexico City: Editorial Lagrares.
Swartz, S.L., Shook, R.E., & Klein, A.F. (2003). Guided Reading
and literacy centers. New Jersey: Pearson Learning/Dominie Press.
Wolf, M.M. (1978). Social validity: The case for subjective measurement, or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11, 203-214.
Stanley L. Swartz is Professor of Education at California State University, San Bernardino and Distinguished Professor (Maestro Honorifico) in the Faculty of Human Sciences at the Universidad Autonoma de Baja California. He is also the Director of the Autism Research Group and the Foundation for Comprehensive Literacy Learning.
Emil: stanley_swartz@eee.org
Web site: www.stanswartz.com