Key Considerations for Interdisciplinary Autism Evaluation Teams
In this webcast, Dr. Ruth Aspy and Dr. Barry Grossman discuss considerations to be made when working as an interdisciplinary autism evaluation team.
"What are your backgrounds in the area of assessment?"
I'm Ruth Aspy and I am a psychologist and my background is working as a psychologist in the school settings and I did that for many years and during that time I began to find that I was working more and more with kids who had Autism Spectrum Disorders and I was more and more being asked to participate in evaluation. As I went down that road, I realized how much I enjoyed it and it became something that I have specialized in and I think that Dr. Grossman had a similar experience.
Absolutely. Yes, ever since first entering the field. I'm also a psychologist and my background is in the schools as well. As you all know, you can't work in the schools and not encounter students that are on the spectrum. And so I too was seeing more and more and was very interested in learning more about this. Unfortunately, graduate programs, they don't always really give you that information, enough information and you need to go out on your own and you need to learn more, experience more, seek out more training, read more, etc. So that's kind of been a passion I've pursued and working in the schools, eventually you start to specialize in that, if you will, and serve on school-based teams for assessment. We're now, both of us are in private practice together with the Ziggurat Group and really our focus is on autism assessment and autism intervention as well. That's kind of how we came to be.
"What is the Ziggurat Model and why was it created?"
We talked about the fact that when we worked in the school setting that we did a lot of evaluation. We also did a lot of training, staff training especially in the area of autism. As we were working with staff members, we found ourselves at some point trying to figure out how can we summarize such a large set of knowledge in something that's digestible, something that's understandable without overwhelming people. Right, we were working with teachers who were encountering these students maybe for the first time and so they were seeking some knowledge in this area. "How do we address the behaviors? How do we address the learning issues, etc. for those students that we're working with?" So we were working to develop some professional development training and we targeted those teachers that had students on the spectrum. In the process we sat down and tried to summarize what the key areas of intervention were, that have to be in place for any student with an autism spectrum disorder in order for them to be successful, to make progress. We found ourselves building this thing that turned into the Intervention Ziggurat. As we worked with it, we found that it was actually helpful, made a difference to students, and the Ziggurat Model evolved and that's what the book is. It's describing that model and that process for making sure that interventions are comprehensive.
We were trying to learn from all of the mistakes we had made ourselves as we consulted but also prevent staff members from making some of the common errors, lots of the pitfalls that people make when they go about designing a program for students on the spectrum. They fail to take into consideration the characteristics of the disorder. We think that once you understand autism you've got it whooped just about. It really helps to understand the disorder when you're designing those interventions because the kind of interventions that you know and that most staff members have available to them may not be the interventions that are right for individuals on the spectrum. Other pitfalls- so failing to take into consideration the characteristics, maybe staff members knew one or two interventions and they would use them for every student for every concern and what they needed was a better way to pull together a number of interventions to tailor-make those interventions for a specific student. We were just trying to address some of those pitfalls and help people to really put together a quality program. What experts tell us is that they find that we put on paper what they were doing with their thinking process and that was kind of our goal, to put it down on paper in a way that would be useful and helpful to novices but also experts alike.
"Why is assessment so important in terms of eligibility determination and program development?
There's really no way to make any organized, any consistent progress without having some evaluation information to base that on. And because there are so many different types of individuals who have autism spectrum disorders, it is not enough to know this person has autism or this person has Asperger's. There has to be more detail than that and it's by looking at the characteristics of the individual or the strengths and skills of the individual that allows us to plan something that's individualized and that's going to be meaningful for the student.
Absolutely. I mean your goal really in assessment is a means to an end. It's a critical piece but what is that end? We want to make recommendations that are meaningful for the student, recommendations for the home, for the school setting. We have to do assessment, you know, to get there. When you are looking at interventions, we have to do assessment in order to identify the needs in order to make a meaningful program, in order to get there. There is no way to individualize a program without collecting that vital information.
"Is assessment a one time occurrence?"
No! That's a good question. It isn't. It's obviously ongoing and the evaluation that an interdisciplinary team does when they're together is just the beginning. They collect excellent information because they have an opportunity to go so in depth and to do histories and background information, etc. and to test limits. But, everyday there is new information to be gained, there's progress to be accounted for or lack of progress to be accounted for. Even once the student is identified the characteristics change and there could be a student who at one point has great difficulty let's say in a certain sensory area, that for them when they're in the 3rd grade, at the beginning of the 3rd grade, they become overwhelmed if anyone brushes against them. By the end of the 3rd grade, that could be really something that they have, that's not an issue for them but loud noises are or the tags in their shirt are or the temperature of the room is, and those are just sensory examples. But just like in the sensory area, functioning changes and characteristics change and it's the underlying characteristics checklist that helped to describe what characteristics related to an autism spectrum disorder are present in an individual at any given time.
Think about the different kinds of assessment as well. And so as the individual develops, the skills sets required to be successful are going to change as their environments, as their settings, etc. change. We also think about other kinds of assessment like transition assessment. What are we doing today to help prepare this person for the next step, where are we going with this? So it really is an on-going process.
"Why is it important to have a team involved in the assessment process?
We find that the team is critical. You know, you are looking at a developmental disability. Autism is a pervasive developmental disability and it is critical to have a set of professionals from a variety of fields. We're looking at social skills, communication skills. We include a speech pathologist on our team. We're looking at cognitive skills as well. We have a psychologist, an educational diagnostician. In our private practice we use occupational therapists routinely because motor skills, sensory skills. All these areas are impacted and there is a lot for any single individual to know, but there is a power in a team because our backgrounds are different, our knowledge set is different. But there is also a kind of synergy that happens when you have three or four people in a room and you're making observations from different perspectives, different experiences with different backgrounds. Your outcomes are going to be so much more powerful. You know we said the whole is greater than the sum of its parts and it truly is. Our recommendations are better. Our observations are better. The more accurate your assessment is the better your recommendations are and that's what it's about. The better your interventions are going to be. We find ourselves also, we feel like we are growing as clinicians because of, all of us are as a team of course. There is that development because of what we learn from one another. And so over time, our team is becoming much, much more advanced in our ability to detect, our ability to make meaningful recommendations, etc.
When we talk about interdisciplinary, we distinguish that from multidisciplinary. There are situations where there has been an occupational therapist, a speech pathologist and a psychologist and a psychiatrist and a neurologist, etc. who have worked separately to gather information on an individual and that information is compiled into a report, but it isn't processed together. It isn't integrated. So it still isn't really collaborative. When we say interdisciplinary, we are really talking about people being in the same room at the same time. We're talking about that when we meet with the student, there's almost always a time when the entire team is in the room with the one student. It could look to some as if that's redundant, yeah, poor management of time or something. But what is accomplished during that time is exponentially greater than what could be accomplished in a series of separate events. And the processing that happens afterwards is powerful too, and we learn from each other. When we sit down and write the report, there are times when we will section off things. This is my area of expertise and so I'm going to summarize this area and this is someone else's area of expertise so they'll summarize that area. But, when it comes to the recommendations, when it comes to the actual summary, we talk about whether or not we think a disability is present, that has to be a team consensus. There's not one person, we don't arm wrestle, there's not one person who gets the final say. We actually, we actually talk about it, work through it, and we said earlier we talked about having lively discussions, and I mean to tell you they're lively at times, but they're good discussions. There are times when we start out thinking, we think, yeah this probably does look like an autism spectrum disorder, and by the time we've scanned through all of the data and discussed it and processed it, we realize that there is a better way to understand that student. So, that process is critical because in the end, that understanding is going to make a difference on how that student is served and how well other people in their environment understand what their needs are.
"What do you mean by "consensus" versus "voting" for eligibility?"
I've think we've worked, and I'll let you add too, sometimes there is this perception that one member maybe because of a degree or because their personality etc. that they kind of stand out being the leader or the decider or whatever it may be. We don't see it that way. When we're working as a team, we truly see ourselves as equal partners, collaborators in this evaluation and so we want to come to an agreement together. We want to come to understanding the student. We want that together and so there is not one person who votes and says one way or the other way. There is no tiebreaker, etc.
If there is someone who is new on the team and acknowledges that they do not have as much experience/expertise as other people on the team, it doesn't change the fact that we all need to come to consensus. What we will do is we'll encourage that person. Tell us what seems confusing. Tell us what questions you have. We make sure that we all are coming from the same basis of understanding before we come to a conclusion. There have been times where, and sometimes excellent assessments, if I may say so, end with more questions than answers. When that happens, what we will do is, if we have been in a setting that has another team, we call in another team and staff it with that team and ask them to help us think through it again. Sometimes it's so complex that they actually go meet with the student and gather a little more information before they render their opinion. Another option has been when that hasn't been possible, has been to consult with an outside person who has a lot of knowledge/experience in the area of autism spectrum evaluation. Someone that everyone on the team is comfortable with and who will do the same thing, have them consult and help us to come to a conclusion.
"Are you saying that the ultimate goal is the consensus of the team and obtaining a clear understanding of the child's characteristics and needs?"
That's right. If one person get's the final say and that's known, at some point the discussion dims and the push for understanding dims. All that person has to do is announce that they've made up their mind and everyone else has to shape their conclusions and recommendations in that direction. No one wants to put their name on our report when they don't agree with the outcomes. It's not ethical. It's really not.
Even though the discussion may be lively, it's very meaningful because the kinds of questions we're asking one another, these are the same questions that the parents are going to ask, that the teacher is going to ask or the administrator is going to ask. It's very helpful to have that discussion because you really do come to better understanding of the student and you're able to explain why it is or is not, etc. and so that's very helpful in a process.
"What recommendations do you have for teams who may need outside consultation or support yet they are located in a rural area of the state?"
I'd pick up the phone. We have had some phone calls from colleagues asking us, essentially staffing the case over the phone. There may be other technologies, obviously videoconferencing, Skype, etc. or other more fancy versions that we have available that can be very useful to try to really get at the heart of what's happening, get that consultation, get some additional opinions on things.
"How do you involve parents in the assessment process and make it meaningful for them?"
That's kind of a tough one. There's absolutely no question that they need to be involved. One of the things is for them to understand the process. In the schools, the process is different, I want to say from any other setting. If you're in a hospital or in a private setting, the parents have almost always come to you and said "I wonder if my child has this condition or has these differences. Will you help us to figure that out?" But in the school setting, the evaluation could come from recommendations by others. It could evolve because the student is struggling behaviorally or academically and someone could recommend maybe we need to look at this particular disability area. So the parents weren't maybe as ready for the process. Some of it is explaining the process, answering their questions, trying to alleviate some of their fears, helping them know their rights at the beginning. Then, we try to include them. We let them know, we usually say directly no one knows your child better than you do. You're an expert and don't feel like we have to see something to believe it. If you tell us that something has happened, we don't have to see it happen. We don't want to make your child bang their head to believe it happens, that kind of thing. Then when we begin to draw conclusions, we kind of tell the parents our reasoning out loud. We say these are the things we considered. Because if we don't, if it's something like "well did you remember that we told you that he had a series of ear infections?" They need to know yes, we took that into account. "Do you know that his older sibling has had these behaviors?" "Could it have cause?" We try to let them hear out loud that we thought about this and here's why we went in this direction. Letting them get feedback that answers their real questions and sometimes reassuring them that they've been good parents because they may have gotten such horrible messages across a period of years from other people about their child's behaviors being related to something that they aren't doing right. There are a lot of ways that relating to the parents during the process makes a huge difference. If in the end they don't accept the conclusions, they're not going to buy into the recommendations and there is always going to be kind of a triangle and the child's progress is impeded.
Of course, as a pervasive developmental disorder, we need to really focus on development. Parents, again, are crucial in so many aspects of this, but that in particular is one piece of information that they have the best knowledge of. It's such a critical piece especially when we're looking at a developmental disorder like autism. We are needing to know what did this child look like when he was or she was two years old? What did they look like when they were four years old, etc.? Very helpful to have that information and it's a critical piece when we are looking at this. Or, these behaviors just emerged. For a fifteen year old that would be very meaningful when looking at a developmental disorder. We involve parents throughout, from the beginning, getting consent, getting understanding. They play a vital role and their input is very wanted and required. We take into consideration their concerns as we begin to formulate our recommendations and interventions.
"Is autism a medical diagnosis?"
Autism, it's behaviorally defined. Right now it's identified by looking at behaviors, by looking at characteristics. There are three areas that are used to describe the symptoms of autism spectrum disorders. There are no reliable, at this point, no reliable medical tests for autism spectrum disorders. There tends to be a misbelief that this is a medical disorder and that it must be, therefore, diagnosed by someone in the medical field. Of course what we say is it does not take a medical degree. Individuals on an autism evaluation team are not required to have medical backgrounds in order to conduct autism evaluations. Also, sometimes what we see in the community are medical professionals who may not be as up to speed as those who are working in the schools. People who focus on autism in the schools work with this every day, every week. You're much more familiar and you're much more comprehensive in your approach. Sometimes in the medical community, they will base it on short interviews, meetings with parents. But what do we have in the schools? We have comprehensive speech and language evaluations. We have observations in multiple settings. We have parent input. We have teacher input. We have people who are working with these students on a daily basis. There is this misbelief sometimes that the best quality assessment is going to be attained from the medical community when in fact, those who are working in the schools who see it everyday are a little more comprehensive with their approach and may have more knowledge and more experience in the assessment. This is an unfortunate pattern that we've seen which is that because there is this idea that physicians are supposed to be the ones that do the evaluation, schools have in some situations told parents go get a medical diagnosis, and when you have a medical diagnosis, then we can consider it. Then we can do any other evaluation we need. It has left a burden on the parents to seek the diagnostic information, the disability information before the school is willing to look at eligibility. That is particularly hard for families who are in financial need. But it's against the law, regardless of, yes it's against the federal law. The federal law says it's the school's responsibility to determine eligibility and to find children who need special education. We really need to see across the United States, we need to see people being aware of that standard and getting away from the idea that someone in some other setting needs to do the evaluation. What we've seen is very strong professionals become skilled, knowledgeable, honestly excel in recognizing and evaluating autism spectrum disorders. Everyone that we work with now that we have in our private setting is someone who works now in the public schools and works with us part time or who had years of experience in the public schools. That's why they're so good. We think they're the best of the best. We think Ohio will soon have a very comparable group if they don't already because of that rich experience that working in the schools gives.