Solutions and Strategies for Educational Identification of Students with ASD
I am Ruth Aspy and I am Barry Grossman and we are here to talk about educational identification of students with Autism Spectrum Disorders.
We are both psychologists and we are in private practice now and our background is working in the public schools and a lot of what we are going to talk about is from our experience in doing evaluations in the public school setting. This is an overview of the presentation. In order to be effective in doing evaluation in the public school it is essential to know what the law says. And what we have found is that a lot of people think they know what the law says but the beliefs that are widespread in public schools setting across the United States are faulty. So, we are going to talk a little bit about that. We are going to talk about when to evaluate for Autism Spectrum Disorders and how Autism Spectrum Disorders are defined by different entities. We are going to talk about diagnosis, what that mean and what eligibility means; how they are related to each other. Finally we are going to talk about the team process of evaluation. We are going to call that trans-disciplinary evaluation because that is best practice. And we are going to talk about how teams are selected, how decisions are made when working together in a trans-disciplinary manner.
In presenting to people across the United States, we have had many opportunities to have discussions about evaluation and how it is occurring in different states and what we have come to understand is that many people are operating on what we refer to as myths. And individuals in agencies and in the communities as well have been operating on these myths for so long, that what happens is that there becomes a culture of misunderstanding and so you have administration staff and community and the media that come to hold these things as being true and these myths are spread to subsequent administration, staff members community, and media. What we need is a culture of understanding where we are looking at the sources such as the law and also research on best practice; these are the facts and what we want to do is to base our practices on facts and to create this in our communities.
It's amazing how many times the people that we speak with will tell us what the law says in their state. And the truth is it is not what the law says in their state, it is what the myth has been passed down to them about what the law says in their state. And they're so convinced…they have heard it from the media from their supervisors, they've heard it from their colleagues, and they are so convinced that it is true that we have to show them in print what the law says before they can even begin to believe that what we are telling them is true. So brace yourself for that, that it is possible that you've been a victim of this culture of misunderstanding of these myths. That you may hear something that sounds distinctly incorrect to you during this presentation and you need to go back to the law to see what the facts actually are. And that is part of we want to do is help to share what the law actually says.
And so throughout today we are going to be pulling up pieces of the law in our discussion of these topics. This is what we really want is an epidemic, but in this case it is an epidemic of understanding. Malcolm Gladwell writes in his book called "The Tipping Point". He talks about these epidemics. So for example, there was one story where he told about a few boys in Sojo, New York who became interested in Hush Puppy shoes and that created, really sparked a fad, and he talks about the power of the few. And what we want to do is what we want for there to be, for you, the few, to take the understanding of the law and research and best practice and to create an epidemic of understanding in the agencies in which you work.
So we are going to start with the legal foundations in special education law. In the beginning of IDEA is the purpose of special education and in looking at this there was a piece to this that I was extremely familiar with. It's Free Appropriate Public Education and we heard this many, many times to ensure that all children with disabilities have available to them a free appropriate public education. But it is the second part of purpose that perhaps may be less familiar to many of you as it was to me as well. It talks about the…our purpose here is to help…to meet their unique needs and prepare them for further education, employment, and independent living. These terms have been bolded here on the slide, further education, employment and independent living. And if you think about this as a purpose, things flow into that. When we talk about evaluation, we're going to be doing an evaluation not just to look at academics, but we need to be looking at functional skills and developmental skills because indeed the very nature, the very purpose of special education is to help prepare individuals for further education, employment and independent living. And when we think about eligibility, and what constitutes eligibility, what is enough impact, educational impact, adverse effect, we think about this as well. So this is something we want you to keep in mind. So the purpose of special education is to provide a free appropriate public education and to help provide services that help prepare individuals for further education, employment and independent living. An evaluation to determine a student needs and strengths provides the foundation on which an appropriate education program is built. So evaluation is where is always starts. Without quality evaluation you cannot have FAPE, simply put. So everything hinges on evaluation.
In the federal law and the operating standards here for Ohio, there is something called Child Find. This says each school district shall adopt and implement written policies and procedures to ensure that all children with disabilities residing in the district who are in need of special education related services are identified, located, and evaluated. Those are the key words here…identified, located, and evaluated. This isn't something we are just doing for young children. This goes for all children who are in school from 3 years old to 21. So it is just as much a responsibility of the kindergarten teacher to refer a student for special education testing as it is for the high school senior English teacher. Right? And so child find is something that we always need to be mindful of and it is the school districts responsibility to identify and locate and evaluate individuals on the spectrum. When we are doing an evaluation what we are doing is upholding our responsibility for FAPE.
The federal law and here we have the Ohio citation, talks about what a child with a disability means. And it lists all the disabilities that a student can be eligible for special education services. Note that autism is listed here as are emotional disturbance, learning disabilities, and so on and as you know, each of these terms, these are educational terms. These are not diagnostic terms. And so therefore, they're all broad terms. A term like emotional disturbance, for example, would include individuals that have anxiety disorders, depression, depressive disorders, etc., so true for learning disabilities. It is a generic term, would include student with learning disabilities in reading or math and so on. The term autism is also a generic term. It happens to coincide with the diagnostic term but, indeed, it too is generic and therefore individuals who might have a diagnosis of Asperger's Disorder, PDD- NOS and so on could be eligible under the category of autism. We mention this because believe it or not in our travels we have been told by more than one person that their state, someone who will come to us and will ask, well if someone has Asperger's they cannot be eligible based on our state definition because our state definition says autism. And this indeed is a myth. And this is one area where we need to help to look at the facts and again broad educational terms like autism would include diagnoses including Asperger's.
This is another piece of the federal law that's very critical here. It talks about evaluating children in all areas of suspected disability. And so this would mean that if you have a child who that we call them the speech only child, who may be six years old and displays an overwhelming number of characteristics and they have for some time now, people may suspect that he or she is on the spectrum. You might even hear people say, "Well I am not even sure they would give them any more services if we tested him for another disorder." Well we are required by law to evaluate students in any and all areas of suspected disability. Therefore if a child already has one eligibility we are responsible and required to evaluate them for other areas as well. So if you have a student who is currently speech only and you feel that they have another disability that they may qualify in another area, the school district is required by law to evaluate in that area.
We did want to mention something, every now again what we will have is a parent who may be reluctant to give consent for additional testing. Perhaps their concerned about the stigma that an additional eligibility might give…provide. And so you have some parents…districts who are in this awkward position because the child for example might be eligible under the condition of speech impairment but the school district really does suspect and believe that the child's on the spectrum. The parent refuses to give consent to do an autism evaluation and that kind of puts school districts in an awkward position. And of course we want to refer you to the legal advisor for your district, but we will tell you how we have handled this in our experiences in the school. And we want the school to always be on the side of upholding its responsibility under child find. And you recall under child find, you have to identify, find and locate individuals in your district and we note that we need to look at all areas of suspected disability. So if a school district has offered it to a parent and they have refused it, what we recommend is that they continue to offer it at each and every annual IEP meeting. That they continue to tell the parent that this is something we still suspect and the district is ready, willing and able to provide this evaluation. And let the parent then decide and the parent can decline if they wish to but at least you are documenting that you are upholding your responsibility under child find to offer this evaluation.
We would like you to consider the following: Think about this. How does your district identify learning disabilities? Most people we would say would respond to this by saying "that's very easy. We have a psychologist or educational diagnosticians in our district and they can conduct evaluations and determine whether or not the student is eligible or meets disability criteria for a student with a learning disability." Same is true for speech impairment. Very easy, we have speech language pathologists who work for our district who can do this type of evaluation and make that determination. Emotional disturbance, again we have psychologists who work for our district who can determine this as well. But for some reason the criteria for autism or autism spectrum disorder…how does your district identify this? For some reason, wherever we go we get a different response to this question. Some districts are referring parents out to private evaluators or to community clinics, first, before they would even consider conducting an evaluation of their own. And it is kind of puzzling to us, why autism would be looked at differently than any other eligibility, just like learning disability, speech impairment, or emotional disturbance you have staff who are able to conduct an assessment to determine whether or not there's a disability. And the IEP team, of course, can determine eligibility.
We are going to go back a few slides here. Here's child find and you'll recall that each school district needs to identify, locate and evaluate individuals who may have disabilities. So it's rather puzzling to us why some districts routinely will refer parents at their own expense to other professionals, to medical doctors, to clinics, etc. to do an evaluation before a district would look at it. And it is very clear when you look at child find and when you look at the law, it is very clear that eligibility is the responsibility of the school district. It is the school that must identify, find and evaluate and locate. This is child find. The moral of the story here, the eligibility is the responsibility of the school district and that means that school districts must provide for evaluations in all areas of suspected disability that would include autism spectrum disorders. And, that if the district does not conduct the required evaluation themselves, then they must pay for that evaluation and ensure that IDEA is followed. Quick example, some districts may not feel that they have the staff who have the required training to conduct this type of evaluation. That's ok. If a district does not feel that it is able to do this evaluation then they may refer to private clinics and community centers, universities, etc. And if they do, then the district must therefore pay for the evaluation and make sure that the time lines and so forth are all upheld. There are requirements, of course, outlined in IDEA for evaluators and evaluation timelines…and those need to be upheld. And the contract needs to be between the district and the private evaluator. It would not be sufficient to ask a parent to go and get it and then submit the bill to you because the parent may not choose to take their child or the agency may not complete the evaluation in the required time line so the school, again, has to take the reins on this. The eligibility is always the responsibility of the school district regardless of whether they themselves are conducting the evaluation or not.
I want to talk to you a little bit about best practice with regards to determining when to evaluate for an autism spectrum disorder. At what point would it become necessary to consider screening and evaluation. Well when we look at research, what we are learning is that interventions that are provided in the preschool years have a greater impact than those that are provided later…This is an example of one study that where children who received services prior to 48 months of age had a better outcome years later than children who began services at a later age, the very same services. Again, other studies are seeing benefits. This particular study showed that preschool children with autism spectrum disorders were improving when they were provided with at least two years of intensive early intervention. So the goal here is to provide intervention as early as possible. Very early intervention may be viewed as a mechanism to prevent the full unfolding of the symptoms of ASD by minimizing the associated secondary abnormalities in brain development. Essentially here what we're learning is that intervention really does make a difference and the earlier we can get the intervention to the individual, the better the outcomes.
So, what's the bottom line? When is the right time to seek an evaluation? We would say that really as soon as signs become evident you need to screen and potentially evaluate an individual on the spectrum. Early symptoms, we know, can appear by 12-18 months even sooner we're seeing. Diagnosis is very possible by age 2. But the problem is what we are seeing is a delay. Delays of 2-3 years after symptoms are first apparent. It is very typical to see these delays and what we know is that a delay in evaluation means a delay very often in intervention. And that is not what we want. We want to get intervention to the individual as soon as possible. So what the American Academy of Pediatrics is recommending is surveillance of ASD at every well child visit and they're recommending that formal screening be conducted for every child, every patient of a pediatrician needs to be screened at 18 and 24 months or any point in which a parent raises concern. The American Academy of Pediatrics is arguing against a "wait and see" approach because this is what is happening is very often parents will come in with a concern and the physician might say." Let's just wait and see. This is just a phase. Maybe he'll grow out of it." And those statements, that position, we understand, is really rooted in being conservative or what someone believes to be conservative when in fact what is happening is you are potentially delaying identification and delaying serving an individual on the spectrum, and so really the most conservative approach would be to evaluate and identify as early as possible. The American Academy of Pediatrics also recommended and emphasizes the importance of a team assessment conducted by specialists. We're going to talk to you about that a little bit later. So we love this quote that says " With due consideration to the burden of uncertainty and the concerns regarding over diagnosis it bears emphasizing that providing false hope and postponing a diagnosis also incurs cost to children and families…the most critical issue in mitigating the negative impact of uncertainty is timely access to appropriate intervention services for the child and supports for the parents." So many people, especially when young children are referred to school districts, many evaluators might be tempted to say, "Let's look at him in two more years or three more years, especially because we have all seen children at three years of age who look entirely different from a child at four or five. And maybe they come into your school building at three and they're not talking and a year later or two years later, their either expressive language skills have really, really improved tremendously and so people have a belief that perhaps the most conservative thing to do is to wait a little while, when in fact what research is showing is that the early intervention is so important that the most conservative thing to do would be to refer a child as early as possible, to evaluate as early as possible, and yes even to identify at a very young age. And we recognize that children can present one way when they are very young and that can manifest a little differently in a short time and we think and what we tell parents is exactly that. Your child may look very differently in a little while here or a year or so and we can always reevaluate and reconsider this but right now based on what we are seeing this is what it looks like to us.
In order to identify autism spectrum disorders we have to know what we are looking for, what the definition is. The federal law and IDEA have set out one definition, the disability area of autism and each state has its own variation of that definition. And then the Diagnostic Statistical Manual, the DSM, defines disorders and, of course, under the area of autism is pervasive developmental disorders and there are a number of pervasive developmental disorders that are listed. So we are going to talk about how the different definitions compare. The first definition, the Ohio definition is that autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction generally evident before the age of 3 that adversely affects a child's educational performance. The definition goes on to talk about associated features. While this is how Ohio defines it and it is interesting that some states have variations. If you look at the federal law, the IDEA definition, Ohio has decided to identify autism in an identical manner to federal law, so that makes it easier. In Ohio there are no added twists to the definition to interpret. It's absolutely the same thing as what is in the federal law. Now we look at the DSM characteristics. The DSM-IV TR (text revision) is the current version of the DSM and autistic disorder is one category of pervasive developmental disorder and Asperger's is another category. We look first at autistic disorder and we'll just look at the three main areas of symptoms: social interaction, communication, and restrictive repetitive behaviors, interests, or activities. So you see here that there are three main categories of symptoms. And then, in each of those categories there are descriptions that are more specific under each of these areas. And now you see that there are only two categories of symptoms the social and the restrictive repetitive. What is left out here compared to autistic disorder is the delay in language development. And what we have come to understand and what is clearly accepted by most experts in the field is that people with Asperger's do indeed have significant delays in language especially in the area of pragmatic language, social language, so we know that the next manual, the DSM-V is going to handle diagnosis a little bit differently. So let's look at that. The DSM-V, this is a draft. This is a part of what has been proposed but it is not official yet. And we see that there is one category, Autism Spectrum Disorder and all of the subcategories that were in the previous DSM are no longer there and we have two areas of symptoms. Social and communication have been combined and then you see some detailed descriptions there. And then fixated interests and repetitive behaviors are a second category of symptoms. So we are going to be comparing what the federal law and what Ohio law says autism is to what the DSM says autism is. One of the reasons that we focus on the DSM is because oftentimes when we work with people in the schools that say that they don't use the DSM, they only use the federal law. So what we know…or their state law. What we know is that the DSM is helpful and it is particularly helpful to individuals who are earlier in their practice and their experience of doing evaluations for autism spectrum disorders. So it is a support, a helpful support regardless if your working in a private practice or in the public schools and we'll talk more about that.
This is a comparison of the current DSM, the current DSM-TR with the federal and Ohio state definition of autism and what you see in the left hand category are the descriptors of the symptoms based in the DSM and what you see in the right hand column is the descriptors given in the federal law. What we can see is that the disability descriptions in the law are pretty vague, but they correspond to the descriptors in the diagnostic manual. So while they use different language, the federal law, Ohio law about autism disability and the DSM descriptors are describing the same things. It is just more clear and more detailed using the DSM, but when you are asking yourself "Does this student have the disability of autism?" you are asking yourself the same questions as "Does this person have the disorder of autism/autism spectrum disorder that would be defined in the DSM"? You can see there is a direct overlap and if we went on and did the other areas…repetitive behavior and the communication, you would see an overlap again of symptoms. The definitions are actually a very nice match.
This is simply looking at the projected definition in the DSM-V and we see that again they correspond very directly. This is a slide of Ohio definition of autism and we have already pointed out how the symptoms are described but then there is this important phrase that is highlighted here that this disability adversely affects a child's educational performance. So in order for students to be eligible under the category of autism there has to be not only the disability of autism but also an adverse affect on a child's educational performance. And we stress this because very often when we talk to people across the United States they will say…talk about students who have autism spectrum disorders but that their making good grades so they don't have any adverse affect on their educational performance. So we see over and over a tendency to very narrowly define what it means to have an adverse affect. Here are different ways that educational performance can be adversely affected by an autism spectrum disorder. It could be academic but it also could be communication, social functioning, pragmatic language, organizational skills, ability to work in groups, ability to problem solve, ability to regulate emotions, hygiene, behavior challenges, attention challenges, and daily living skills or adaptive skills. So all of these areas are critical in the educational process…are ways that autism can affect a student and in turn affect their ability to progress in the educational systems. So we need to broaden the way we think about adverse affect and think about things beyond "are they making A's, are they passing, are they doing well on state tests?" We also need to ask questions like "are they able to function well in the cafeteria?" "When they work in groups do they think that they have to be in charge and make all the rules?" "Are they able to pay attention, to understand the behavioral expectations, etc?"
All of these things are part of educational performance.
So this is looking at the 2 tiers of eligibility, the first is disability, which is autism, and the second is does that disability affect… adversely affect educational performance and if those two things are present then the student is eligible. And you probably can hear our bias, but when we understand how broadly defined adverse affect is, what we have found…it is difficult to find a student who has autism spectrum disorder who is not eligible because autism spectrum disorders do adversely affect educational performance in one of these ways that we've listed. Very often schools get stuck in looking only at academic needs and not in looking at other ways that autism spectrum disorders can impact educational progress.
This is a quote from Washington, D. C. " A child with Asperger Disorder may be more verbal than other children with autism and may have average or above average intelligence yet still be in need of services." That can't be emphasized too much. " The consequences of a missed or late diagnosis include social isolation, peer rejection, lowered grades, greater risk for mental health and behavioral distress such as anxiety and depression during adolescence and adulthood." So if we myth away that autism spectrum disorders are impacting an individual we are increasing their risk for these kinds of psychological disorders and negative experiences.
This consequences of late diagnosis just shows that process of how Autism Spectrum Disorders can lead to challenges that can later lead to emotional disorders if those challenges are not recognized and if those students are not served and supported in special education.
We're now going to talk about how diagnosis and eligibility compare and what we call the myth of medical diagnosis. Here you see side-by-side diagnosis and eligibility and just the facts about the two. Diagnosis is based on the DSM- the Diagnostic manual. Eligibility is based on the federal law and the state's definition or interpretation of that law. The DSM diagnosis refers to a specific disorder. The eligibility categories are more broad. In the DSM…the DSM is used most often in private settings. Eligibility is strictly a public school system in the United States concept. And finally diagnosis may be determined by an individual or a team, and in a very excellent way, the federal law requires that for eligibility a team must be involved in the evaluation process.
This is a quote from the Autism Society. "There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior and developmental levels." And now we know that somewhere is Europe there has been a study of a limited number of adults using some imaging techniques to look at the possibility of diagnosing through those imaging techniques and they've had some success. But unless you are an adult that lives in that limited place and can get into that study, it is still true that there are no medical tests for diagnosing autism and it will be many years before any such thing is available on a widespread basis. And the way that we diagnose and the way that we evaluate autism is by looking at communication, behavior and developmental level.
We've talked about the fact that very often we hear that parents go to the public school and say "we wonder if our child has autism" and they are told in response, well go to a doctor and see what they say and if a doctor says that your child has autism come back with a report or a statement and we'll take that then and consider the possibility that your child is eligible for special education. And that is the idea that the school doesn't have to do anything, for some reason in this area of autism until some medical statement has been received. And when the schools take this stance they are doing something that is illegal, that flies in the face of child find, and that may well be denying the student FAPE (a free and appropriate public education.)
In order to be good at evaluating autism a person needs to have training and to be experienced. And this quote from Freeman and Cronin points out how complex this diagnosis is or eligibility is and how essential it is for the people involved to be trained and experienced.
These are various areas that an expert, in order to be considered an expert, a person needs to know autism and not just classic autism but what autism looks like across the spectrum, what autism looks like across genders. A person needs to have experience with doing differential diagnosis. There are some other disorders where there is an overlap of characteristics and we need to be able to distinguish one disorder or one eligibility from another. A person needs to know typical development, to have evaluation skills, and in general, to know how to do an interview, to know the state and federal law, and very essentially, individuals need to know how to work on a team.
Very often in our travels we have people tell us that a child that looked like they had autism to them but that they didn't qualify because they didn't have a certain score that met the cut off for a specific test. And they use that cut off score as if it is a final decision maker and then what they saw, what they heard, what the parents are reporting, what the teachers are reporting just doesn't carry the same weight as the cut off score. And that is a sign that the members of the team lack clinical training and lack the ability to make judgment based on all the information that they gather. There is no score that trumps the …all the other evaluation information. So these are the key points that we have discussed here that …that eligibility for all disabilities including autism spectrum disorders is the responsibility of the public schools. That calling autism a medical diagnosis is inaccurate and actually implies that people in the school setting don't and cannot have the expertise to do the evaluation when indeed they can. And it is getting the training and the experience that is important for people in the public schools to do that just like people in any other setting can. And, that the level of expertise as the examiner is more important than the field. So there is not one particular field that has the better judgment or the better knowledge of autism spectrum disorders. The thing to look at is the experience and the training and the knowledge level of any given examiner or any given team.
We would like to talk to you briefly about some of the trends we are seeing in autism spectrum disorder prevalence. Two studies have been released not too long ago that are pointing to higher prevalence of autism spectrum disorders and you can see here we have 1 in 91 and 1 in 110, essentially we are hovering right around 1 in 100 if you estimate the average of these two together we could say that about 1 in 100 is what we are seeing here in the United States. It is also the prevalence that we are seeing in other countries like the United Kingdom and Australia and others is really 1 in 100 of course it used to be 1 in 150 just a few years ago and 1 in 166 a few years before that, so we are seeing a prevalence rate that is increasing here. We know that boys are more often identified than girls. The typical ration is about 4 and a half boys to every female. So when we look at these national statistics, we are seeing around 1 in 100 is the rate. If we compare those statistics to what we are seeing in the schools, it tells a pretty frightening story.
Here is the story that we are seeing in the public schools. This is the data for all the states. Every state, of course, has to report prevalence rates to the government and they use their data to create this graph and this is autism prevalence rates in public schools for 8 years olds. That is exactly how the prevalence rates in those other studies; the CDC study rather, is conducted. They look at 8 year olds…just that slice. And what we are seeing here, at the top you'll see there is a little blue line that talks about 1 in 100 and you can see that there is only about 4 states, of all the states, there's only about 4 states identifying at that 1 in 100 rate. What does that mean? It means that the majority of states are under identifying autism spectrum disorders. When you compare the rates that they are reporting to the government to the prevalence rates that are estimated in the entire United States. We've also put the blue line here, and this is 1 in 150 and you can see that there are more states that are captured in that, but even still the majority are below that. The 1 in 150 statistic, of course, is also old. If you are curious where Ohio is we are going to go ahead and click and you'll see a little arrow and Ohio is right here about in the middle. And this is a zoomed in version. Ohio is at 1 in 158. My home state of Texas is at 1 in 163. So again you see that states are grossly under identifying individuals with autism spectrum disorder. What we find, of course, is that in the public schools, as teams become more and more skilled at identifying individuals on the spectrum, the rates of that district are going to climb and climb and climb because they are going to be more accurate identifying, there are going to identify more individuals. And sometimes what happens is that they are reprimanded. And this has been our experience in working both in the schools and working around the country. Our experience as we talk to individuals that work within is the schools is that when their rates go up, there is a question…why have our rates increased? And are our rates about where they need to be? And what most people do is they compare the rate in one district to the rate in that state, and what we've shown here is that the state rate is grossly under identifying for most states. We know that the national prevalence rates are 1 in 100, so to say that a 1 in 130 or 1 in 120 or 1 in 150 is an accurate…where we want to be… a yardstick is false. It is very meaningful when we look at this.
So what we really want to do is compare a district to the national prevalence rate rather than to a state's prevalence rate. Under-identification means underserved. The best example of that is females. What we are finding is that females are the most under-identified group, especially high functioning females. They are less likely to be referred, less likely to be identified. This is a quote here it says that, " One reason why the prevalence rates in girls and women is so low in comparison to boys and men may be the fundamental lack of awareness of what Asperger Syndrome looks like in females." We would argue that the criteria themselves have really described what it looks like in boys because that is a group where the prevalence is much more higher. So under-identification means underserved. And we need to be striving to really bring our district averages to where the federal…national average is, which right now is at 1 in 100.
Now we are going to talk about the team process. And first we are going to talk about who needs to be or who should be on an evaluation team. There are a series of quotations here that talk about the qualities of people who should participate in the evaluation. And you see expertise. They need to be people with expertise, experience, and there needs to be interdisciplinary members, so people from different professional backgrounds. Because the IEP objectives for children with autism must cover social functioning, communication functioning, motor functioning, cognitive functioning, etc., the evaluation has to cover those areas as well. So the members of the evaluation team need to be able to evaluate by looking at developmental history, health history, adaptive skills, to look at psychological functioning, communication functioning, motor functioning, sensory functioning, cognitive functioning, etc. The evaluation for autism eligibility is a very broad evaluation.
Now we are talking about team members and who should be a member of the team. The members need to be people who have extensive exposure to autism spectrum disorders. This is a statement by Marilyn Monteiro, and what she says and what we emphasize, is that it is not as important what the person's job tile is as it is that they have extensive exposure to autism spectrum disorders, that they have extensive experience in the area of autism.
Team members need to have expertise in the area of autism. Again we see the word expertise. What does it mean to be an expert? An expert is having, involving, or displaying special skills or knowledge derived from training or experience.
So when putting together a team for a public school, an evaluation team, the question is, "Do you have people in your setting who already have expertise?" If not, how do they get that expertise? When the experts say that people who are doing evaluations for autism spectrum disorders need to have extensive knowledge and extensive exposure to autism… what does that mean? Does that mean a two-week training, does that mean two years of practice, does that mean two thousand evaluations? Of course that is extreme. How do you know when you are ready or when an individual is ready to be a functioning member of an autism team? This is absolutely a process that requires people who have expertise.
Who might be considered to be on the team? It depends on the setting, but this is a list of possible positions that team members could be selected from.
What does it mean to be multidisciplinary verses transdisciplinary? Multidisciplinary means that there are people from several different disciplines who are working to do the evaluation. But very often the people in those disciplines are working in isolation from each other. So their product, their report, their conclusion ends up just being a compilation of the individual evaluations into one report.
In contrast, we recommend transdisciplinary evaluation. This is a comparison of multidisciplinary, interdisciplinary, and transdisciplinary. Multidisciplinary just means that people from different disciplines have worked on the evaluation in isolation from each other. Interdisciplinary means that people from different disciplinary backgrounds have participated in the evaluation in consecutive sessions in isolation from each other again. And transdisciplinary is when those people from different backgrounds are all present together with the student during some part of that evaluation process.
This compares how different type of teams make decisions and in the multidisciplinary setting, some individuals…case manager, team leader…takes the information, compiles it and draws conclusions. In the interdisciplinary, the teams will rely on consensus. The difference in transdisciplinary is that the decisions are made through consensus and through collaboration. So there is a give and take and some learning from each other and some processing of what other team members are observing. Working with the student interactively leads to the conclusion in the transdisciplinary evaluation.
Recommendations. There is a difference between mutidisciplinary and the other types. In multidisciplinary, the recommendations are simply complied from each of the member's lists of recommendations. Interdisciplinary, there is consensus and transdisciplinary, again, there is consensus and collaboration.
In the report the difference is again that the transdisciplinary team works collaboratively to write the report and sometimes in the transdisciplinary team, different team members will write in their area of expertise but they are never surprised at the end how it concludes, they're never surprised by the recommendations because there is also collaboration along the way.
This is a list of responsibilities of team members and ideally the team members will participate in most of, if not all of, the aspects of the evaluation. Certainly all of the team members will be together with the student at some point and all the team members will observe and will work together in developing the recommendations in the evaluation process.
If you find yourself in a setting where there is agreement that no one has the level of experience and knowledge required, then one of the things that districts sometimes choose to do is to contract with an outside person who is an expert, to do evaluations with a selected group of professionals in the school setting and to supervise, guide and train those professionals until the actual staff members in the school district are able to carryon without that ...without the guidance of that expert. So the goal is for the expert to work themselves out of a job and then for the team to be able to function independently. And once the team has developed some expertise, then they will be able to train another team. The way that we have seen it be most effective for one team to train another is for the two teams to actually work together for…to identify a new set of professionals who will be on the autism evaluation team. And to have two full teams: a psychologist and a psychologist, a speech path and a speech path, and OT and an OT, etc., who all work together on two or three evaluations. And it sounds kind of overpowering and sometimes it is, but we have been able to make it work very well. And we select the students that we do those evaluations with to be students that won't be overwhelmed by having so many individuals involved. And once everyone has had a chance, all the new team members have had a chance to participate together, then the teams split and the way they team split is that some of the people who have been on the first team, the ones who have had the most experience and training, will be on one team, and then some of those will be on another team so that no team is all novices, no team is all new people. And then the experienced people are able to work together to train the new members of the evaluation process. So every time you need a new team, you just split and train new set of team members. In that way, one setting can over time have a number of operating and knowledgeable teams.
One of the things that is different in transdisciplinary evaluation is how the decisions are made. And it can lead to lively conversations but there is no single person on an evaluation team who gets the final say on whether or not a student is eligible or has the disability of autism. The team has to come to a consensus and that is absolutely doable. One of the things that we have found is that every now and then a team will just not be able tot decide and will feel that the information is not clear enough, and when that happens, that team will invite another district team to join them and help them sort through the information and make a decision. But before a decision is made, it has to be a consensus decision. It has to be unanimous. We have never had a team that wasn't able to do that either through working together as an individual team or by bringing in a second team to be consultants.
We call the autism evaluation team the bomb squad and that is because if you are going to be involved in autism evaluation in the public schools you need to be prepared for it to blow up on you. And that is simply the case. A lot of times in public schools the families aren't necessarily excited about the fact that the evaluation is occurring. They might feel that they would have selected someone else to do the evaluation if it had not been in a school setting. Often administrators are being asked, "How do your identification rates compare to rates in other places?" And here's the thing, as teams get better at identifying autism, the rate of identification will, for a period of time, increase. And as the people around the team see the rate of identification increase, they begin to wonder…what is that team doing? And why is the rate so high? And you have to be prepared to be accused of over-identifying, being accused of seeing autism everywhere you look because indeed we know the rates are higher where there are more experts. And as you become an expert, that is something that you need to brace yourself for especially in the public school setting. We know, it's clear from the statistics that we looked at earlier, that the rate of identification of autism in the schools is woefully low. Kids are woefully underserved…under-identified. So when we move to recognizing more of them we are actually more accurate than not. And finally this is one of the reasons why we are considered the bomb squad and that is because often the media and the community think of assessors in the public school as being second class and they often are guided to seek assessment elsewhere. We have an X through this for a reason. This is a statement that was found on the website about autism law talking to parents about what to do if they think their child needs an evaluation for autism. It says the first step, " If you can afford a private assessment research professionals in your geographic area who are qualified to make an assessment for pervasive developmental disorders (PDDs). If you cannot afford to hire a private assessor, send a letter to the school principal requesting the school make a full assessment of your child. A sample letter is provided in the sample letter section of this website." So here is what we are facing that even when people in the schools are very well trained and very experienced, there is a misinformation blowing out there, that the better assessments are done in the private setting. Sometimes that's true and sometimes that isn't but we have to really raise our standards and be sure that we are excellent and experienced in order to overcome these perspectives.