SME: Could you describe your background?
RLS: I went to college in the late 1960’s, and I received a degree in psychology at a small arts and sciences college. At that time I had little or no interest in education. I entered a Master’s degree program in psychology; and as part of my program, I participated in a series of school psychology practica. I took school psychology courses, and I became very much interested in education at that time. I found it to be a very stimulating area. When I started working for several school districts in the suburban Kansas City area, I met some graduate students in special education and found myself identifying with these people and what they were doing. These students were from the University of Kansas, and I enrolled in a couple of courses there. I really got hooked on the discipline; and shortly thereafter, I enrolled in a doctoral program.
While I was in my doctoral program, I was able to support myself as a staff psychologist at the University of Kansas Medical School. I worked at the Children’s Rehabilitation Unit which was a multi-disciplinary program. I was fortunate to have the opportunity to work with some very talented people, not only as a graduate student but also as a professional colleague. Part of my responsibility at the Children’s Rehabilitation Unit was to work with some lab school programs. There was a total of six classrooms for kids with disabilities. This is in the early to mid 1970’s, and approximately 30% to 40% of the youngsters in our lab school had a diagnosis of autism. However, some of them were viewed or had been coded as schizophrenia or various psychotic conditions or intellectual disability. By today’s standards, without hardly any stretch of the imagination, those kids would have been called ‘classically autistic’ or some form of pervasive developmental disorder.
During my time on staff and as a graduate student, I found my niche. I was intrigued by those youngsters and, luckily, I had the opportunity as a ‘green’ student to work with some master teachers who were very talented. It was at a time when the public schools were starting to respond to mandates to provide services to all kids with disabilities. These kids were so severe that they essentially were outside the bounds of most schools. Thus, the lab schools were one of the few opportunities for them to go to school. We ended up having a large percent of kids in the Kansas City metro area because our lab school was one of the few places available to these youngsters.
I found myself feeling like a metal filing being attracted to a magnet–I was just intrigued with those kids. Initially, working at the lab schools was more a straight-forward, clinical interest of mine. However, these kids were so unusual and so fascinating to me that I found myself aligning with the teachers because they were making some very good gains with their students. I was really intrigued; and I think from that point on, I was hooked on students with autism.
When I finished my doctoral degree in special education with an emphasis on emotional and behavioral disorders, I was asked to join the faculty at the University of Kansas, and I spent about a year on faculty. We did not have an autism program at the time. Then I wrote a proposal for federal funding to establish a demonstration program for kids who were severely emotionally disturbed. This was one of the first times that the demonstration grants were made available. Actually, my colleagues at the University of Kansas did not think my program would receive funding because there was quite a bit of competition. I got real lucky and received funding for 3 years. I then moved my office into a public school in the Kansas City, Kansas public school district, a large inter-city setting.
Essentially, the grant was to start and run an autism program. We had labeled our kids, when we first received funding, severely emotionally disturbed so as to be consistent with our funding mission. However, these kids all had autism. I ran this program for 3 years. I worked with the students everyday in the classroom, along with the teachers and with the administrators. We were able to do some really interesting and fascinating work, and there were several very talented students who worked with me. They have gone on, in their own rights, to be very successful in the area of special education, including with kids with autism. It was a real fortuitous opportunity, early in my career, to have an opportunity to independently try out some things, sort out what I thought would work and not work, and rub elbows with some folks in the field who were on the cutting edge. From there I have had a number of opportunities to operate training programs, to write grants, and to conduct a variety of studies in the area of autism. I am one of those people who, early in my career, got hooked on these kids. I found myself mesmerized with them, just wanting to know more about them and what we can do to help out.
SME: When did you become interested in Asperger syndrome?
RLS: I am one of those people who was suspicious of the diagnostic classification of autism early on. I would often see many youngsters being identified as PDD-NOS under the old DSM III-R. Some of the diagnosticians in our clinical settings were not terribly accurate on how they assessed kids with so-called autism related disorders and high-functioning autism. It did not seem to be a category that had good integrity. I, probably naively, did not know if it existed as a separate group. However, the more I worked in schools and worked with teachers, especially in regular education programs, I kept seeing these kids that were very unique. They had the social quirkiness and the idiosyncratic behaviors of autism; but they had good language, relatively strong cognitive skills, and terrible deficits in other skills. I became very interested, slowly but surely; and came to the realization that this was an independent population.
When DSM IV legitimized Asperger syndrome, I observed diagnosticians, at least in our state and community, grapple with who these kids are and what we can do to help them. As more diagnosticians started to identify these kids, it became apparent to me that Asperger syndrome is an intact population and that it is a diagnostic group independent of any other group that falls on the spectrum of autism. After people started to figure out how to diagnose Asperger syndrome, schools were reporting that they were overwhelmed. They had not the slightest idea of what to do with these kids. Many of the methods they used with other kids, especially kids with autism, were found to be unacceptable. Some of my colleagues and I started working in this area. We were disturbed that there was so little information. It just seemed to be one of those ‘black holes;’ there was almost nothing that was provided for educators on how to handle these kids. We started writing, reading and working out various things.
SME: Would you like to comment on the diagnostic category–PDD-NOS?
RLS: I think PDD-NOS appears to be one of those ‘wastebasket’ classifications. PDD-NOS does not provide a very clear direction for families who are trying to understand the disorder nor for practitioners who are trying to educate or treat these kids. On the one hand, it is an overused and poorly used classification. I think there are some diagnosticians who probably have not had their learning curve far enough advanced or they have not had sufficient training to conduct a good assessment or diagnosis of Asperger syndrome. They, perhaps, shy away from the diagnosis of Asperger syndrome because they do not feel completely comfortable, so they use PDD-NOS. At the same time, I would hasten to add that some individuals probably do not have all of the characteristics that fall under the classification of DSM IV; but they still have a number of significant characteristics of autism. I just think the way PDD-NOS is currently used prostitutes the diagnostic picture because it is not used correctly and people use it as a default classification. They are just unsure, and they end up using it as a wastebasket.
SME: I have heard some clinicians say they use the PDD-NOS category because they do not want to hurt the parents’ feelings by using the ‘autism’ label or even Asperger syndrome. I think this is quite sad because parents want to know the truth. If you put yourself in their position, you do not want to be given the run-around or some vague, indirect label.
RLS: I couldn’t agree with you more.
SME: Also, when a parent is told that their child has PDD-NOS, there are not many books on this subject, such as ‘how to help your PDD-NOS child,’ nor parent support groups nor newsletters. There are a few, but not many. These parents are just lost; they do not know what to do next. Even though some people say you should avoid labels and only treat the symptoms, I think we need labels to know where to start and to know where to get information.
RLS: I have heard very seasoned psychiatrists, social workers, and clinical psychologists say the same thing–we need to go easy, we need to make sure that we don’t rush to a diagnosis. In contrast, I have heard many parents say they would have loved someone to say “This is probably what it is, but we’re not really sure–this is our best guess at this point” rather than offer something that is so vague as PDD-NOS.
SME: How do you determine whether a child has Asperger syndrome because there are no physiological tests at this time–the diagnosis is based solely on behavior and language. Can you also comment on the age issue because I have heard some children diagnosed with Asperger syndrome as young as 2 years of age.
RLS: First, Asperger syndrome is not a particularly easy diagnosis to make, but we do have some guidelines. When kids ultimately receive a correct, reliable diagnosis of Asperger syndrome, many of them have already been identified as AD/HD, LD, behavior disordered, or perhaps PDD-NOS. I can just see why so many of these kids end up the way they are.
The characteristics which bode best for an accurate diagnosis of Asperger syndrome are the social interaction impairments. The kids that I am seeing are social responders–they are very interested in social contact, and they are interested in developing social relationships. However, they lack the understanding of body language and other non-verbal behaviors; and they do not understand social niceties. They want a reaction from others regardless on whether it is positive or negative. They are strong in this regard. However, they do not seem to be particularly connected with all of the social interests of most kids, such as wanting to play games or to manipulate them. To me these kids are ‘raw,’ they want social contact. I think if diagnosticians are sensitive and aware of this condition, and allow observations to be made, we can identify many of the salient characteristics and use them as a guiding light. I think the social interaction component is very important. The more I work with these kids, they seem so much different than other kids with other disabilities or aberrant behaviors.
Another ‘guiding light’ of kids with Asperger syndrome is their speech/language characteristics. These kids often have a pedantic vocabulary and grammar; and they have a stilted, repetitive, and flat affect in their speech. They also go through cumbersome monologues. These kids pick up rather eccentric and esoteric topics; and they become so immersed in them that these topics become their whole world. They then give this facade or impression of being very bright, but their comprehension is often so literal that the relevance and the acuity of what they say and do is often quite impaired.
If people really understand Asperger syndrome, I think we can do a better job of identifying these kids early. I do not know if we can do this by age 2, given the current state of affairs. When I hear about youngsters who are identified at a very early age, I am always suspicious. I suppose if someone had very strong patterns of autism; normal intellectual and cognitive development, normal speech and language development and highly aberrant behaviors, we can speculate that “this kid will probably wind up as an Asperger type youngster.” We really have a better handle at around age 4 or 5 on whether these kids fit the criteria we have laid out because much of the disorder seems to be of a clinical inference and social inference nature. I have to admit that I really do not have any empirical support for this position– this is how I see youngsters and how they appear to me to go through the mental health clinic assessment process.
SME: I often describe people with Asperger syndrome as wanting friends but they cannot keep them.’ Does this make sense to you?
RLS: I agree with you–the kids who are social responders want to initiate, and they do initiate; but they have such poor skills because they just don’t have a clue about what to do socially. These kids are so much fun to work with and they are often very responsive to interventions. When you give them the tools and teach them the skills, they become motivated to interact appropriately. When we tell a kid that we are going to give him a cognitive-behavioral approach that he can use, and this will help him do better in making and keeping friends. These kids are often very motivated. You cannot program kids in all regards; but it does seem, in many instances, that they are willing to use these methods. We do not take the approach of force-feeding them. Many of the Asperger kids I work with are eager for things–you give them something, they take it, it works, and then use it again in the future. They may, at first, over-generalize it and use it too much, but it is so much fun to see a kid so highly responsive.
SME: Can you offer some suggestions or advice to parents on how they may want to approach the IEP procedure given that they have a son/daughter with Asperger syndrome?
RLS: It just seems that school districts, even under the best of conditions, are not sophisticated in understanding Asperger syndrome. In so many instances, these kids are going to attend general education programs. Even if you have a relatively sophisticated special education staff is available, these kids are often going to be in a regular classroom. As a result, the IEP will primarily relate to those situations involving regular educators. This raises some concerns. School personnel often get defensive observing that “we are professional people so don’t come in here and tell us about a condition.” This defensiveness occurs even if the educators do not really know about Asperger syndrome. This way of thinking is disturbing. Parents can help school personnel become more comfortable with the disorder, and this will lessen the problem. For example, parents can go to the school and tell the educators that it is difficult to diagnose this condition. They can also offer some suggestions to the educators, such as “Here is what we have had professionals share with us,” and “this may be helpful.” Parents also need to know when to back off a little bit. Over the years, I have seen this approach work quite well.
Some of the characteristics of the disorder in the classroom are very difficult to deal with, such as distractibility, inattention, and tunnel vision. These students also have visual processing strengths and frequent auditory difficulties. Kids who rely on rote memory appear to understand what is going on, and they appear to have a lot more going for them than they actually do. A teacher may say that this is a kid who has ‘got it together,’ and so we should move on. However, in many instances, the student will have significant school problems. The student will likely have social interaction problems and possibly poor motor skills, such as with handwriting. Before long, the teacher is seen as an uninformed educator, even though he or she is good hearted and is very skilled in many ways–but the kid’s problems become exacerbated. And soon, you have a crisis on your hands. These kids are then ‘set back’ or maybe more accurately ‘set up.’ It is very disturbing to see these kids having so much difficulty in school. Moreover, these kids are so vulnerable in the school; they are so easy to be bullied by their peers and can be manipulated and provoked into difficult situations. I think it is a pretty tough road for parents right now. One of these days it will be a lot easier for parents. Right now, parents are piloting; and to do this, they need to be well informed to provide some insights and background for educators. They may also need a support group who will support them and their kid. It may be in the parents best interest, for now, to play ‘the game’ of knowing when to back off; otherwise they may threaten the school. When the school feels threatened, then communication often shuts down; and this is not healthy at all.
SME: With respect to high school years and adulthood, do you have any suggestions for parents and professionals?
RLS: Our program has the benefit of having available to it a non-profit autism resource center. For the last few years, our graduate students, our staff, and our resource center have operated a support group for older adolescents and adults with Asperger’s syndrome. One of the things we are learning is that these youngsters are probably more severely impaired than people often think. I think they are frequently co-morbid for depression. They are also, from my experience and the experience of our group, vulnerable to unemployment, to losing jobs, and to involvement in illegal activities because they get manipulated by people who are willing to use them. We are finding that these individuals require a support group, but the support is really for social activities. We have learned some valuable lessons about forming relationships-first creating social bonds; and then once they have these relationships, teaching these young people to understand that they will need some degree of support and there are some people who care about them and are willing to provide guidance.
We formed this group because we had several families in our community who told us that once their kids finished high school, they were losing jobs, they were alone or they were hanging out with the wrong crowd of kids. Basically, they were saying there was almost nothing out there in the way of services. We started this as a little community project and support mechanism. Once we began these support services, we recognized the enormous need for them. We are not meeting the needs of our community by any stretch of the imagination. But I think we are seeing that when these youngsters are provided with some programs and supports, they often do pretty well.
I have heard people say “Well, these kids are out of school, they graduated, they have a high school education, and they have a mild disability, but they are going to get along okay.” I don’t know if we can be so cavalier about young adults with Asperger syndrome at this point. I just think the experiences that I am having now suggests that this is probably a more severely impaired population of youngsters than we had originally thought. If we do not provide services to these youngsters, we may be doing a grave injustice to them and their families; and we may undo some of the other things that have previously been taught to them by schools and clinicians.
SME: Can you comment on some specific interventions that you feel are helpful for people with Asperger syndrome?
RLS: There are several interventions that we found to be pretty effective. One is social stories. I think many of these individuals are bewildered by a complex world, and they do not read social cues. If we give them a way to structure their world, such as what to do in unique situations, then social stories will likely prove to be effective. Some people say that social stories have not stood the test of time and that hardcore replicated research has not been conducted to evaluate social stories as a valid and practical tool. But I think social stories have tremendous promise, and we are seeing very positive results.
We are seeing good utility using cognitive-behavioral strategies, in particular, self-monitoring and self-management strategies. We are having our best results where we have an agreed upon goal and an agreed upon need. The kids with Asperger syndrome we are working with are discovering that if they are willing to use a behavior in a given situation and self-monitor and self-reinforce, they can gain control, be more independent, and be more successful. They are also finding that they are going to find themselves less often in situations where they feel uncomfortable or vulnerable, where they ‘explode’ because they feel that they are out of options. We have had a great deal of success with these cognitive-behavioral strategies. Many of our teachers state that these youngsters often rebel at the idea of someone manipulating consequences. But when these students are given an opportunity to make decision and to self-monitor, self-reinforce, they feel that they are in control.
We have also had some degree of luck with social scripts and social autopsies. With regard to social scripts, youngsters can be scripted to make appropriate initiations for short periods of time or for short interactions. I am reminded of a high school kid who would carry around the disciplinary code at his school. Actually, he had the entire code memorized. During break time and between classes, he would approach groups of kids and start spouting out the rules of the school, verbatim. This was a problem because the other kids would blow him off or provoke him. I know that some of his teachers started using scripts which involved teaching him to say more appropriate things or knowing when not to speak. This was not completely successful. But then we worked with the peers and told them what to say when this student began talking about the school’s disciplinary code, such as ‘not appropriate’ or ‘not here,’ the student was quite responsive and was more accepted by his high school peers.
With social autopsies, the teacher sits down with the student after a social incident and reconstructs what had happened. The teacher then discusses with the student what can be done and what are the options for the next time this may happen. Other strategies can also be used at this time, such as social stories, cognitive-behavioral methods, and contingency contracts. Contingency contracts involve having the students monitor their own behavior, select their own contingency, and pay themselves off. I think we are a long ways away from becoming real proficient at this, but I am pleased that we are making some inroads.
I would like to mention that there is a real need to alert parents and educators about the importance of protecting kids with Asperger syndrome, placing them in situations where they are not going to be exposed to teasing and bullying classmates. Many times we feel too secure because these kids are high functioning, and we assume that they are going to be okay. These kids are extremely vulnerable and educators need to set up a supporting environment for them to be accepted as part of the student body.
SME: You recently published a book with Brenda Myles on Asperger syndrome. Could you talk about this book?
RLS: We wrote the book because many teachers and professionals would contact us and ask us for information about Asperger syndrome. Actually, we were being over-run by requests. Many teachers would contact us and say “We know that you guys have a program in autism, and we are having difficulty with a student with Asperger syndrome. Could you please send us a list of books or articles on the topic.” We were unable to find much relevant information so we decided to do write this book. We tried to make it real basic and not fancy nor elaborate. We view this book as a survival guide for educators and parents. That is, this is what Asperger syndrome is and here are some of the things we know. We are quite pleased with the book. Brenda and I had taken on this book project because we felt there was an extraordinary need that was not being met. However, it is one of those books which I would love to revise because we know so much more than we did when we wrote it. We have received so much feedback from different people who have used some of our materials and have taken our ideas a step further. They are writing to us and saying “Did you think about this?” “Did you know about …?” We are keeping track of all of these suggestions, and we will add them to our book when it is time for a revision. My guess is that the revised book will wind up twice the size as it is now.
SME: Would you like to comment on the journal, Focus on Autism and Other Developmental Disabilities?
RLS: I serve as Senior Editor for Focus on Autism and Other Developmental Disabilities, and John Kregel, who is at Virginia Commonwealth University, is the co-editor. Pro-Ed publishes this journal. For a number of years I edited a small journal called Focus on Autistic Behavior. Our readership became quite large; and the publisher, Pro-Ed, wanted to expand it. They also wanted this journal to cover a variety of topics on developmental disabilities, not just autism. At that point, I searched for a co-editor because I did not feel comfortable covering the whole range of developmental disabilities. This is how John Kregel got involved. Our journal, which is actually growing all of the time in readership, was not designed to be a research journal; but thanks to you and your colleagues, we are receiving some very good research-based manuscripts. Our mission was to provide practitioners, teachers, therapists, and others in the field with information that would allow them to work with youngsters with autism and autism-related disorders. We wanted them to have a sense of what is ‘best’ practice, what is promising practice, what’s emerging, and what they might do.
We recognize there are several strong journals out there, such as Bernard Rimland’s Autism Research Review International newsletter, which is loaded with great research materials, many of which falls in the biological, genetic, and medical arena. The Journal of Autism and Developmental Disabilities, edited by Gary Mesibov and his bunch is also a very good journal. Our mission was very different from these two publications, and we never intended to compete with them. We felt that there was a need for someone to offer some practical information as well as some insight into education. It is interesting that our readership keeps increasing. Our legacy has been to work with practitioners, but we are now receiving more subscriptions from researchers who are also contributing to the journal. This is somewhat of a nice problem to have, and I am very optimistic that we will continue to thrive.
SME: I feel that there is a great need in the autism community for your journal, and I find that many of the articles are quite relevant to my research endeavors as well as my colleagues.
RLS: For a long time, Focus on Autism and Other Developmental Disabilities would most likely be found in the teachers’ lounge or in the parents’ home. We are changing, and we are trying to move forward and provide useful information to researchers as well. But at the same time, we do not want to lose our long-term connection and history with practitioners who often have much different interests than the research community. This process has been interesting, and I have been doing this for a long time. Sometimes I get tired of serving as a journal editor, but then I look at where we have been and where we want to go, I cannot help but get energized. Luckily, because of people like you and your wife, and your colleagues, such Bernard Rimland and Margaret Bauman, we are receiving some very fine manuscripts that are taking us in a number of different directions.
SME: I would like to thank you very much for taking the time to discuss autism and Asperger syndrome with me. Keep up the great work! We are counting on you.