I hope that everyone using ABA to help their child with autism has already signed up for the December 2 conference with Dr. Mark Sundberg. That conference, where Dr. Sundberg will speak about the VB-MAPP assessment tool, is sold out. But that doesn't mean it's too late to hear Dr. Sundberg speak, along with other excellent behavior analysts. The annual conference of the Maryland Association for Behavior Analysis (MABA) still has seats available.
I have been attending the MABA conference annually since 2006. Usually, I'm one of 2 or 3 parents there. I think that's unfortunate because I always learn something that I can bring home to improve my daughter's ABA program. (Well, maybe the year they talked about Behavioral Economics would be a stretch, but almost always.) This year they have the most exciting line-up of speakers I've ever seen there, so I encourage everyone to make this the year you check it out.
The full schedule of speakers is here. Dr. Sundberg alone is a reason to attend. Any of us who have used ABA programs or sent our kids to schools that apply B.F. Skinner's analysis of verbal behavior owe a huge debt to Mark Sundberg. While Skinner's book Verbal Behavior is fascinating, it doesn't tell you the first thing about how to help a child with autism. Sundberg, his colleague James Partington and their teacher Jack Michael took the ideas in that book and figured out how to apply them to help our kids. The result, published in Sundberg and Partington's book Teaching Language to Children with Autism or Other Developmental Disabilities, is a masterpiece of applied science and my daughter's education would not have been the same without it. I attended a conference with Dr. Sundberg in Fairfax a few years ago. He's a lively and engaging presenter too.
Sunday, November 28, 2010
Tuesday, October 19, 2010
Welcome to Motivations! Join our discussion about ABA and autism.
Welcome to “Motivations,” the POAC blog! Since 2008, as part of POAC’s effort to promote the use of evidence-based applied behavior analysis (ABA) interventions to help kids with autism, we periodically produced a print bulletin. That bulletin, like this blog, was called “Motivations,” after the importance of capturing and leveraging a child’s motivation when doing ABA.
A basic principle of the bulletin was that autism families already have too much to read and too many things to do. So when a POAC member had already invested the time to read a new book, review the recent research, attend a conference or when they had been through an experience, the bulletin summarized the key points for other parents. Our goal was to save your valuable time while seeking to help you help your child with autism.
Still is. Only now we hope the blog can make it more interactive – each post can trigger a discussion. We look forward to your comments and reactions. Adding your experience will make the whole thing richer for everyone who follows the blog.
In case you missed any, all the previous print bulletin articles are posted below. We’re busy-bordering-on-overwhelmed people (like autism parents everywhere) so we can’t say exactly how often this blog will be updated. We hope it will be about monthly. Stay tuned for new posts and discussions.
A basic principle of the bulletin was that autism families already have too much to read and too many things to do. So when a POAC member had already invested the time to read a new book, review the recent research, attend a conference or when they had been through an experience, the bulletin summarized the key points for other parents. Our goal was to save your valuable time while seeking to help you help your child with autism.
Still is. Only now we hope the blog can make it more interactive – each post can trigger a discussion. We look forward to your comments and reactions. Adding your experience will make the whole thing richer for everyone who follows the blog.
In case you missed any, all the previous print bulletin articles are posted below. We’re busy-bordering-on-overwhelmed people (like autism parents everywhere) so we can’t say exactly how often this blog will be updated. We hope it will be about monthly. Stay tuned for new posts and discussions.
Friday, October 1, 2010
Childhood Apraxia of Speech: What Is It, Really?
This post originally appeared in the April 2010 print version of Motivations.
As parents of children with autism, all of us have faced our kids’ challenges with speech and language delays. Many of us, at some point along the way, have heard the diagnostic term ‘apraxia’ thrown around about our kids. Or we’ve heard the term ‘dyspraxia.’ Or both. My wife and I have two spectrum kids and we have had conversations about both terms about both kids. We wondered ‘what are these conditions really, and what’s the difference?’
Recently, my daughter’s speech therapist, Kelley D. Shaw CCC-SLP, invited me to the March 26th annual convention of the MD Speech-Language-Hearing Association. At the convention, Ms. Shaw gave a very helpful keynote presentation on apraxia. Though this convention is for professional speech pathologists, right up front she answered the ‘what’s the difference’ question. There is no difference. The terms are interchangeable, though unfortunately most autism parents aren’t typically told that.
But Ms. Shaw also pointed out that most parents should not be hearing this term at all. Childhood Apraxia of Speech (CAS), which is the formal term for the condition, is very rare. Comprehensive prevalence data do not exist, but the few small studies that are published found between 3% and 5% of kids referred for speech meet the criteria for apraxia. That’s 3-5% of ALL kids with speech issues, so kids with autism are a further subset of that small number.
As parents of children with autism, all of us have faced our kids’ challenges with speech and language delays. Many of us, at some point along the way, have heard the diagnostic term ‘apraxia’ thrown around about our kids. Or we’ve heard the term ‘dyspraxia.’ Or both. My wife and I have two spectrum kids and we have had conversations about both terms about both kids. We wondered ‘what are these conditions really, and what’s the difference?’
Recently, my daughter’s speech therapist, Kelley D. Shaw CCC-SLP, invited me to the March 26th annual convention of the MD Speech-Language-Hearing Association. At the convention, Ms. Shaw gave a very helpful keynote presentation on apraxia. Though this convention is for professional speech pathologists, right up front she answered the ‘what’s the difference’ question. There is no difference. The terms are interchangeable, though unfortunately most autism parents aren’t typically told that.
But Ms. Shaw also pointed out that most parents should not be hearing this term at all. Childhood Apraxia of Speech (CAS), which is the formal term for the condition, is very rare. Comprehensive prevalence data do not exist, but the few small studies that are published found between 3% and 5% of kids referred for speech meet the criteria for apraxia. That’s 3-5% of ALL kids with speech issues, so kids with autism are a further subset of that small number.
Science On Your Side: Evidence About the Role of Parents in Autism Treatment
This post originally appeared in the May 2009 print version of Motivations.
Most parents of kids with autism know that, under the IDEA law, parents are members with equal standing on their child’s IEP team. But many of us have difficulty asserting ourselves in this role because we may be the only member of the team without specialized credentials in special education or therapy. Generally, I have found it helpful to remember that the meeting is not about special ed or therapy in their entirety, things the other team members know much more about than I ever will. It is about how they might apply to my daughter. I am one of the two world’s leading experts about my daughter.
While this idea builds my confidence, it is especially useful to learn that scientific research supports my active role in my daughter’s education and treatment. Intervention researchers who have studied the effectiveness of Applied Behavior Analysis (ABA) for autism have also researched the value of parents contributing to the interventions. Here are some of the findings, all published in respected, peer-reviewed journals:
In Ivar Lovaas’ landmark study at UCLA showing the effectiveness of ABA for autism, parents were a vital part of the treatment:
“The parents worked as part of the treatment team throughout the intervention; they were extensively trained in the treatment procedures so that treatment could take place for almost all of the subjects’ waking hours, 365 days a year.”
Lovaas, O. Ivar. (1987) Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children. Journal of Consulting and Clinical Psychology, 55, 3-9.
Most parents of kids with autism know that, under the IDEA law, parents are members with equal standing on their child’s IEP team. But many of us have difficulty asserting ourselves in this role because we may be the only member of the team without specialized credentials in special education or therapy. Generally, I have found it helpful to remember that the meeting is not about special ed or therapy in their entirety, things the other team members know much more about than I ever will. It is about how they might apply to my daughter. I am one of the two world’s leading experts about my daughter.
While this idea builds my confidence, it is especially useful to learn that scientific research supports my active role in my daughter’s education and treatment. Intervention researchers who have studied the effectiveness of Applied Behavior Analysis (ABA) for autism have also researched the value of parents contributing to the interventions. Here are some of the findings, all published in respected, peer-reviewed journals:
In Ivar Lovaas’ landmark study at UCLA showing the effectiveness of ABA for autism, parents were a vital part of the treatment:
“The parents worked as part of the treatment team throughout the intervention; they were extensively trained in the treatment procedures so that treatment could take place for almost all of the subjects’ waking hours, 365 days a year.”
Lovaas, O. Ivar. (1987) Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children. Journal of Consulting and Clinical Psychology, 55, 3-9.
Conference Review: Collaboration is Key at MSHA Convention
This post originally appeared in the March 2009 print version of Motivations.
This year, our speech pathologist invited me to attend the Annual Convention of the MD Speech-Language-Hearing Association (MSHA). It’s a two day conference, but a parent’s life doesn’t stop easily for these things – still need to pick up my daughter from school, birthday parties remain a top priority. I was able to join three sessions on the first day. One strong theme emerged – collaboration.
Melanie Upright, a speech-language pathologist (SLP) working in the public schools in Charles County, presented the first session on using the curriculum in language therapy. Ms. Upright had us imagine an all too-common situation in IEP meetings: one team member (in her case the SLP, but many parents have had the same experience) asserts the child has mastered a certain skill. Then the classroom teacher says “No way. That does not happen in the classroom.” This is the issue that has been a focus in behavior analysis for decades – the problem of generalization of skills.
Ms. Upright suggested that one piece of this problem is that weekly speech sessions can be too disconnected from the regular curricular work of the classroom. Therapy may be entirely unrelated to the other lessons of the day. She recommended SLPs collaborate with the school’s instructional leadership team (reading specialists and other resources) to get access to the curriculum materials and to the school’s “Pacing Guides” or “Standards Guides.” These guides are documents that map the standards of the MD State Voluntary Curriculum to specific lessons teachers will use.
This year, our speech pathologist invited me to attend the Annual Convention of the MD Speech-Language-Hearing Association (MSHA). It’s a two day conference, but a parent’s life doesn’t stop easily for these things – still need to pick up my daughter from school, birthday parties remain a top priority. I was able to join three sessions on the first day. One strong theme emerged – collaboration.
Melanie Upright, a speech-language pathologist (SLP) working in the public schools in Charles County, presented the first session on using the curriculum in language therapy. Ms. Upright had us imagine an all too-common situation in IEP meetings: one team member (in her case the SLP, but many parents have had the same experience) asserts the child has mastered a certain skill. Then the classroom teacher says “No way. That does not happen in the classroom.” This is the issue that has been a focus in behavior analysis for decades – the problem of generalization of skills.
Ms. Upright suggested that one piece of this problem is that weekly speech sessions can be too disconnected from the regular curricular work of the classroom. Therapy may be entirely unrelated to the other lessons of the day. She recommended SLPs collaborate with the school’s instructional leadership team (reading specialists and other resources) to get access to the curriculum materials and to the school’s “Pacing Guides” or “Standards Guides.” These guides are documents that map the standards of the MD State Voluntary Curriculum to specific lessons teachers will use.
Augmentative and Alternative Communication (AAC): The Research Case
This post originally appeared in the January 2009 print version of Motivations.
In the last issue, I described our family’s experience selecting an augmentative and alternative communication (AAC) device for our daughter with autism. I left off with the question ‘where is the research that supports the assumption that assistive technology can help teach kids with autism?’ There is a developing body of research in this area. Fortunately, two useful reviews of this research have been published in journals of the American Speech-Language-Hearing Association (ASHA). ASHA is the professional association of speech-language pathologists – most likely your child’s speech therapist is a member.
The first review, by Millar at al in 2006 (1), looked at the impact of AAC on the speech of individuals with various developmental disabilities. The researchers assessed the effects of implementing AAC devices on speech across 23 studies with a total of 67 participants. 31% participants had autism, the remainder other developmental disabilities (mental retardation, Klinefelter’s, cerebral palsy).
The first question on the minds of the researchers mirrored the one most on the minds of parents – will using AAC decrease the likelihood that my child will ever speak? Results show it is unlikely – 82% of the participants increased their speech, 11% were unchanged, and only 7% had speech decreases. This result allows for significant variations in how well the studies were controlled. When the review drills down to the 6 most carefully designed studies, which represent the best evidence, none of the 17 participants in the 6 studies showed a decrease in speech. 94% of these participants showed an increase instead.
Particularly heartening is the fact that not all of these participants were young children. Many parents fear that after some threshold age speech is beyond hope. The researchers note the studies “suggest that speech gains may still be realized by individuals with developmental disabilities well past the critical early childhood years.”
Based on all the evidence they reviewed, the authors conclude “clinicians and parents should not hesitate to introduce AAC interventions to individuals…whose speech is inadequate to meet their communication needs.” As an autism parent, I wondered ‘Do these results hold if you limit the studies to just the participants with autism?’ Last year, Schlosser and Wendt issued another research review (2) targeted to autism populations. They looked at 9 single-subject design studies (27 participants) and 2 group studies (98 participants). Using larger studies and more rigorous criteria, these researchers had the same finding: “There is currently no evidence that AAC intervention hinders speech production in children with autism or PDD-NOS.” While the speech gains they found in the studies are variable and usually small, the authors emphasized these gains are in addition to the direct communication benefits of the AAC use itself – “gains in speech production ought to be viewed as a bonus of AAC interventions rather than as an expectation.”
The studies included in both reviews implemented AAC along with a wide variety of teaching approaches. Is there evidence specific to using AAC in the context of applied behavior analysis (ABA)? There are some encouraging results, but we need more. In 1998, Schepis et al (3) implemented voice output devices in a natural environment teaching setting similar to those used in verbal behavior or pivotal response training ABA programs. Observing 4 students in two classroom routines (snack and play), again there was no evidence of speech loss. Instead, all students increased their language use in all forms – voice output, gestures, nonword sounds and speech. Most encouraging, the students increased their spontaneous language: “each child used the [voice output device] consistently without a specific verbal prompt to communicate, and used it relatively frequently without any preceding verbal behavior from a staff person.” The AAC use by the children even improved the behavior of the teachers, with staff interaction with students increasing significantly in response to spontaneous AAC use.
Another ABA-based study published this winter (4) cautions against the idea that synthesized speech from AAC devices may be more effective with children with autism due to its consistency. The researchers found students still respond better to spoken language models, but they conclude the results “should not be used as evidence against the potential effectiveness of speech-generating devices to facilitate language acquisition in children with autism.”
Hopefully, additional studies in the years ahead will detail how to best integrate AAC devices into ABA programs and identify the children who respond best. Meanwhile, parents and teachers can feel comfortable that the existing literature supports efforts to use these devices with children who have not yet developed speech or sign language skills.
1 Millar, Diane C., Janice C. Light and Ralf W. Schlosser. (2006) The Impact of Augmentative and Alternative Communication Intervention on the Speech Production of Individuals with Developmental Disabilities: A Research Review. Journal of Speech, Language and Hearing Research, 49, 248-264.
2 Schlosser, Ralf W. and Oliver Wendt. (2008) Effects of Augmentative and Alternative Communication Intervention on Speech Production in Children with Autism: A Systematic Review. American Journal of Speech-Language Pathology, 17, 212-230.
3 Schepis, Maureen M., Dennis H. Reid, Michael M. Behrmann and Kelly Sutton. (1998) Increasing Communication Interactions of Young Children with Autism Using a Voice Output Communication Aid and Naturalistic Teaching. Journal of Applied Behavior Analysis, 31, 561-578.
4 Ferris, Kelly J. and Michael A. Fabrizio. (2008) Comparison of Error Correction Procedures Involving a Speech-Generating Device to Teach a Child with Autism New Tacts. Journal of Speech-Language Pathology and Applied Behavior Analysis, 3.3, 47 – 59.
In the last issue, I described our family’s experience selecting an augmentative and alternative communication (AAC) device for our daughter with autism. I left off with the question ‘where is the research that supports the assumption that assistive technology can help teach kids with autism?’ There is a developing body of research in this area. Fortunately, two useful reviews of this research have been published in journals of the American Speech-Language-Hearing Association (ASHA). ASHA is the professional association of speech-language pathologists – most likely your child’s speech therapist is a member.
The first review, by Millar at al in 2006 (1), looked at the impact of AAC on the speech of individuals with various developmental disabilities. The researchers assessed the effects of implementing AAC devices on speech across 23 studies with a total of 67 participants. 31% participants had autism, the remainder other developmental disabilities (mental retardation, Klinefelter’s, cerebral palsy).
The first question on the minds of the researchers mirrored the one most on the minds of parents – will using AAC decrease the likelihood that my child will ever speak? Results show it is unlikely – 82% of the participants increased their speech, 11% were unchanged, and only 7% had speech decreases. This result allows for significant variations in how well the studies were controlled. When the review drills down to the 6 most carefully designed studies, which represent the best evidence, none of the 17 participants in the 6 studies showed a decrease in speech. 94% of these participants showed an increase instead.
Particularly heartening is the fact that not all of these participants were young children. Many parents fear that after some threshold age speech is beyond hope. The researchers note the studies “suggest that speech gains may still be realized by individuals with developmental disabilities well past the critical early childhood years.”
Based on all the evidence they reviewed, the authors conclude “clinicians and parents should not hesitate to introduce AAC interventions to individuals…whose speech is inadequate to meet their communication needs.” As an autism parent, I wondered ‘Do these results hold if you limit the studies to just the participants with autism?’ Last year, Schlosser and Wendt issued another research review (2) targeted to autism populations. They looked at 9 single-subject design studies (27 participants) and 2 group studies (98 participants). Using larger studies and more rigorous criteria, these researchers had the same finding: “There is currently no evidence that AAC intervention hinders speech production in children with autism or PDD-NOS.” While the speech gains they found in the studies are variable and usually small, the authors emphasized these gains are in addition to the direct communication benefits of the AAC use itself – “gains in speech production ought to be viewed as a bonus of AAC interventions rather than as an expectation.”
The studies included in both reviews implemented AAC along with a wide variety of teaching approaches. Is there evidence specific to using AAC in the context of applied behavior analysis (ABA)? There are some encouraging results, but we need more. In 1998, Schepis et al (3) implemented voice output devices in a natural environment teaching setting similar to those used in verbal behavior or pivotal response training ABA programs. Observing 4 students in two classroom routines (snack and play), again there was no evidence of speech loss. Instead, all students increased their language use in all forms – voice output, gestures, nonword sounds and speech. Most encouraging, the students increased their spontaneous language: “each child used the [voice output device] consistently without a specific verbal prompt to communicate, and used it relatively frequently without any preceding verbal behavior from a staff person.” The AAC use by the children even improved the behavior of the teachers, with staff interaction with students increasing significantly in response to spontaneous AAC use.
Another ABA-based study published this winter (4) cautions against the idea that synthesized speech from AAC devices may be more effective with children with autism due to its consistency. The researchers found students still respond better to spoken language models, but they conclude the results “should not be used as evidence against the potential effectiveness of speech-generating devices to facilitate language acquisition in children with autism.”
Hopefully, additional studies in the years ahead will detail how to best integrate AAC devices into ABA programs and identify the children who respond best. Meanwhile, parents and teachers can feel comfortable that the existing literature supports efforts to use these devices with children who have not yet developed speech or sign language skills.
1 Millar, Diane C., Janice C. Light and Ralf W. Schlosser. (2006) The Impact of Augmentative and Alternative Communication Intervention on the Speech Production of Individuals with Developmental Disabilities: A Research Review. Journal of Speech, Language and Hearing Research, 49, 248-264.
2 Schlosser, Ralf W. and Oliver Wendt. (2008) Effects of Augmentative and Alternative Communication Intervention on Speech Production in Children with Autism: A Systematic Review. American Journal of Speech-Language Pathology, 17, 212-230.
3 Schepis, Maureen M., Dennis H. Reid, Michael M. Behrmann and Kelly Sutton. (1998) Increasing Communication Interactions of Young Children with Autism Using a Voice Output Communication Aid and Naturalistic Teaching. Journal of Applied Behavior Analysis, 31, 561-578.
4 Ferris, Kelly J. and Michael A. Fabrizio. (2008) Comparison of Error Correction Procedures Involving a Speech-Generating Device to Teach a Child with Autism New Tacts. Journal of Speech-Language Pathology and Applied Behavior Analysis, 3.3, 47 – 59.
When ABA meets AAC: One Family’s Experience
This post originally appeared in the November 2008 edition of the print version of Motivations.
One of the advantages of applied behavior analysis (ABA) as a teaching strategy for our children with autism is that it is neutral regarding a child’s method of communication. If your child is not vocal, ABA programs can teach effectively using sign language, text, pictures or other communication devices. Many parents are not aware that the popular Picture Exchange Communication System (PECS) was developed by behavior analysts, who used B.F. Skinner’s analysis of verbal behavior to shape the system.
When our daughter Anneliese remained non-vocal at age three, we were convinced by the logic and research developed by Mark Sundberg. He argues that sign language is most likely to lead to increased speech1. We began teaching her ASL signs and she eventually learned to request and label with over 100 signs. While ASL has been a doorway to speech for many children, in our case Anneliese’s signs did not transfer to vocal language. Additionally, maintaining her signs took constant effort. Her consistent vocabulary hovered around 30 signs, with new signs just replacing old ones as her motivation changed.
As her sixth birthday approached, we finally conceded she would not become a fluent signer and likely might not speak either. We began to research text-based communication using an augmentative or alternative communication (AAC) device. We knew we had been using AAC for years, since AAC refers to any alternate method of communication – signs, gestures, pictures are all AAC. But it was time to add assistive technology to our strategy.
The distinction that AAC is a method and not just a word for assistive devices was underscored by a recent workshop at the AT:LAST Maryland Assistive Technology Co-op (http://www.matcoop.org/). Diana Jurist, assistive tech specialist, presented “What Are the Options When You Can’t Speak?,” a useful overview of AAC methods and the tools to support them. A focus of the presentation was on evaluation and assessment – how to determine the right method for a given child and, if necessary, the right device.
Jurist said that often parents hear of a device that works for another child and come determined to get that device. Or maybe they’ve just heard the name of a common device and come looking for, say, a DynaVox, because they suspect it might be an answer. In place of these ‘shot in the dark’ approaches, Jurist points parents and professionals to a framework called SETT – Student, Environment, Tasks, Tools. Notice that Tools come last – individual consideration of the student’s needs and abilities, where and in what ways they need to communicate all precede even thinking about a particular device.
In our case we know our daughter has no physical limitations that would restrict our choices. We know she has the cognitive ability to use text-only because she has learned sight words in ABA intensive teaching sessions. Those same sessions have proven her excellent scanning skills. So we knew we could use a tool with a complex, word-based display.
She would need to use the device to request desired objects and activities around our home, to interact with neighbors in the community and to communicate with teachers at school. The tasks would be varied even within those environments. For instance. at school she transitions from natural environment teaching to intensive teaching at a desk, with different vocabulary applying to goals in each setting. So we needed a tool with multiple levels of display, so she could select differing words at home, school and around the block.
In our case, this SETT framework analysis led us to arrange for a loan from AT:LAST of a Go Talk 20 device. It has a display of 20 touch-cells that can be programmed to speak a word or phrase. It supports 5 different levels, so we can dedicate varying 20 cell levels to home, community and different school tasks. This framework clarified my thinking about this choice and will guide my continued re-evaluation of the choice. For more detail on SETT, take a look at:
http://sweb.uky.edu/~jszaba0/JoySETT.html.
At this point, if you have good autism-parent instincts, you are asking: “Sounds peachy, but prove it--where is the research that supports the assumption that these assistive technology devices can help teach kids with autism?” Fortunately, two excellent reviews of the research were published over the last year in speech pathology journals. I’ll share the key points from those reviews in the next issue of Motivations.
One of the advantages of applied behavior analysis (ABA) as a teaching strategy for our children with autism is that it is neutral regarding a child’s method of communication. If your child is not vocal, ABA programs can teach effectively using sign language, text, pictures or other communication devices. Many parents are not aware that the popular Picture Exchange Communication System (PECS) was developed by behavior analysts, who used B.F. Skinner’s analysis of verbal behavior to shape the system.
When our daughter Anneliese remained non-vocal at age three, we were convinced by the logic and research developed by Mark Sundberg. He argues that sign language is most likely to lead to increased speech1. We began teaching her ASL signs and she eventually learned to request and label with over 100 signs. While ASL has been a doorway to speech for many children, in our case Anneliese’s signs did not transfer to vocal language. Additionally, maintaining her signs took constant effort. Her consistent vocabulary hovered around 30 signs, with new signs just replacing old ones as her motivation changed.
As her sixth birthday approached, we finally conceded she would not become a fluent signer and likely might not speak either. We began to research text-based communication using an augmentative or alternative communication (AAC) device. We knew we had been using AAC for years, since AAC refers to any alternate method of communication – signs, gestures, pictures are all AAC. But it was time to add assistive technology to our strategy.
The distinction that AAC is a method and not just a word for assistive devices was underscored by a recent workshop at the AT:LAST Maryland Assistive Technology Co-op (http://www.matcoop.org/). Diana Jurist, assistive tech specialist, presented “What Are the Options When You Can’t Speak?,” a useful overview of AAC methods and the tools to support them. A focus of the presentation was on evaluation and assessment – how to determine the right method for a given child and, if necessary, the right device.
Jurist said that often parents hear of a device that works for another child and come determined to get that device. Or maybe they’ve just heard the name of a common device and come looking for, say, a DynaVox, because they suspect it might be an answer. In place of these ‘shot in the dark’ approaches, Jurist points parents and professionals to a framework called SETT – Student, Environment, Tasks, Tools. Notice that Tools come last – individual consideration of the student’s needs and abilities, where and in what ways they need to communicate all precede even thinking about a particular device.
In our case we know our daughter has no physical limitations that would restrict our choices. We know she has the cognitive ability to use text-only because she has learned sight words in ABA intensive teaching sessions. Those same sessions have proven her excellent scanning skills. So we knew we could use a tool with a complex, word-based display.
She would need to use the device to request desired objects and activities around our home, to interact with neighbors in the community and to communicate with teachers at school. The tasks would be varied even within those environments. For instance. at school she transitions from natural environment teaching to intensive teaching at a desk, with different vocabulary applying to goals in each setting. So we needed a tool with multiple levels of display, so she could select differing words at home, school and around the block.
In our case, this SETT framework analysis led us to arrange for a loan from AT:LAST of a Go Talk 20 device. It has a display of 20 touch-cells that can be programmed to speak a word or phrase. It supports 5 different levels, so we can dedicate varying 20 cell levels to home, community and different school tasks. This framework clarified my thinking about this choice and will guide my continued re-evaluation of the choice. For more detail on SETT, take a look at:
http://sweb.uky.edu/~jszaba0/JoySETT.html.
At this point, if you have good autism-parent instincts, you are asking: “Sounds peachy, but prove it--where is the research that supports the assumption that these assistive technology devices can help teach kids with autism?” Fortunately, two excellent reviews of the research were published over the last year in speech pathology journals. I’ll share the key points from those reviews in the next issue of Motivations.
Knowing What You Don’t Know: A Key to Evidence-Based Practice
This post originally appeared in the September 2008 print version of Motivations.
In a 1958 psychology textbook, a chapter on childhood schizophrenia started this way:
Childhood schizophrenia was then used as an interchangeable term with autism. These authors’ contemporaries were mostly coming to the conclusion that the children with autism in their care were the victims of damagingly bad parenting, which could be corrected with psychotherapy for both parent and child. This theory of the cause and treatment of autism failed and many more ideas that were unsupported by evidence have failed in its wake.
Fifty years later, the field is not so young, but those fifty years would have been better spent if the advice of those authors had been followed. Rather than acting on theories and assumptions, practitioners could have considered a very important piece of knowledge – knowing what you don’t know. We still don’t know the answers to many fundamental questions about autism. Findings in genetics and other disciplines are suggesting that individuals with autism are more heterogeneous and variable than anyone fifty years ago would have imagined. However, when working today with children with autism we can re-learn this old lesson.
Consider what an educator knows about a child when they come into the classroom or clinic. Often, all the information is that they have a diagnosis of autism. The diagnosis may call to mind a lot one has learned from other individuals, or from books, conferences and classes. But what do you know about the specific individual in front of you?
You know only three things: They have a deficit in communication. They have a deficit in socialization. They exhibit repetitive or stereotyped behaviors. You may have documentation detailing these three domains of the child’s functioning, or you may not. Even if you do, how much do you know?
Apply these three domains to yourself and see how revealing they are. In my case, I perform somewhat above average in the communication domain. I work as a writer of government publications. Before that I was a college English teacher. In the social domain, I’m about average. I can hold up my end of most conversations, but I’m awkward at parties. I don’t have any repetitive behaviors outside social norms, though I fidget with my pen in meetings and often whistle tunelessly to myself.
Knowing that much, do you know anything that is useful to an educator or therapist? Do you know what motivates me? Do you know how I learned any of the skills I have or have any insight to how I might learn more? Do you know if I’m bothered by any particular sensations? Do you have any indication of my IQ? (Consider the range between the brightest professor and the daftest bureaucrat you’ve ever met). So what’s the protocol for ‘people like me’?
The heterogeneity of any group of people defined by their functioning in these three domains is vast. So is the heterogeneity among children with autism. So when a child comes into a new learning environment, a teacher should consider what may be the most important thing they know – you know that you don’t know.
The first step, then, is to gather information that will fill the gaps. This step is what makes applied behavior analysis (ABA) so well suited to teaching children with autism. All ABA begins with a careful study of the individual child, seeking to have the child teach the teacher how the child learns.
First, a teacher begins with a careful reinforcer survey so they can determine what motivates the child. Using those reinforcers to test performance during skill assessments, that teacher gathers direct data about what the child knows and needs to know. By exposing the child to different environments and again gathering data on how the child responds, the teacher learns the settings that are conducive to that child’s learning.
Using the data from the most authoritative source, the child, the ABA teacher forms a hypothesis about how to most effectively teach them. The hypothesis will lead to choosing strategies from various ABA methods that have been validated in research studies – discrete trial training, milieu teaching, pivotal response training, etc. While proven to be effective with research subjects, these procedures aren’t chosen because “they work for kids with autism.” They are chosen because the study of one child gives reasons they may work with that child.
Once any procedure is implemented, the ABA teacher doesn’t continue on the assumption that the procedure is correct. They don’t know that yet. They’ll know it only when the child learns. If, after repeated trials, data shows the child isn’t learning, the process begins again – learn more about the child, change procedures, test the results again.
This is a model of evidence-based practice. In the seminal essay on evidence-based practice, Sackett et al say it “means integrating individual clinical expertise with the best available external clinical evidence from systematic research.” The ABA teacher only knows things about a child that they have learned from direct clinical experience with that child. They only apply procedures which are research-based. Otherwise, they remember what they don’t know. While we wait for answers to the more fundamental questions about autism, this kind of evidence-based practice is arguably the best strategy to address the heterogeneous needs of autistic children.
In a 1958 psychology textbook, a chapter on childhood schizophrenia started this way:
Partisan points of view have no place here. The field is too young; all of us are still groping in the dark. The more objectively the worker can approach open questions, and study the partial answers to others, the better equipped he will be to contribute toward the solution.
Childhood schizophrenia was then used as an interchangeable term with autism. These authors’ contemporaries were mostly coming to the conclusion that the children with autism in their care were the victims of damagingly bad parenting, which could be corrected with psychotherapy for both parent and child. This theory of the cause and treatment of autism failed and many more ideas that were unsupported by evidence have failed in its wake.
Fifty years later, the field is not so young, but those fifty years would have been better spent if the advice of those authors had been followed. Rather than acting on theories and assumptions, practitioners could have considered a very important piece of knowledge – knowing what you don’t know. We still don’t know the answers to many fundamental questions about autism. Findings in genetics and other disciplines are suggesting that individuals with autism are more heterogeneous and variable than anyone fifty years ago would have imagined. However, when working today with children with autism we can re-learn this old lesson.
Consider what an educator knows about a child when they come into the classroom or clinic. Often, all the information is that they have a diagnosis of autism. The diagnosis may call to mind a lot one has learned from other individuals, or from books, conferences and classes. But what do you know about the specific individual in front of you?
You know only three things: They have a deficit in communication. They have a deficit in socialization. They exhibit repetitive or stereotyped behaviors. You may have documentation detailing these three domains of the child’s functioning, or you may not. Even if you do, how much do you know?
Apply these three domains to yourself and see how revealing they are. In my case, I perform somewhat above average in the communication domain. I work as a writer of government publications. Before that I was a college English teacher. In the social domain, I’m about average. I can hold up my end of most conversations, but I’m awkward at parties. I don’t have any repetitive behaviors outside social norms, though I fidget with my pen in meetings and often whistle tunelessly to myself.
Knowing that much, do you know anything that is useful to an educator or therapist? Do you know what motivates me? Do you know how I learned any of the skills I have or have any insight to how I might learn more? Do you know if I’m bothered by any particular sensations? Do you have any indication of my IQ? (Consider the range between the brightest professor and the daftest bureaucrat you’ve ever met). So what’s the protocol for ‘people like me’?
The heterogeneity of any group of people defined by their functioning in these three domains is vast. So is the heterogeneity among children with autism. So when a child comes into a new learning environment, a teacher should consider what may be the most important thing they know – you know that you don’t know.
The first step, then, is to gather information that will fill the gaps. This step is what makes applied behavior analysis (ABA) so well suited to teaching children with autism. All ABA begins with a careful study of the individual child, seeking to have the child teach the teacher how the child learns.
First, a teacher begins with a careful reinforcer survey so they can determine what motivates the child. Using those reinforcers to test performance during skill assessments, that teacher gathers direct data about what the child knows and needs to know. By exposing the child to different environments and again gathering data on how the child responds, the teacher learns the settings that are conducive to that child’s learning.
Using the data from the most authoritative source, the child, the ABA teacher forms a hypothesis about how to most effectively teach them. The hypothesis will lead to choosing strategies from various ABA methods that have been validated in research studies – discrete trial training, milieu teaching, pivotal response training, etc. While proven to be effective with research subjects, these procedures aren’t chosen because “they work for kids with autism.” They are chosen because the study of one child gives reasons they may work with that child.
Once any procedure is implemented, the ABA teacher doesn’t continue on the assumption that the procedure is correct. They don’t know that yet. They’ll know it only when the child learns. If, after repeated trials, data shows the child isn’t learning, the process begins again – learn more about the child, change procedures, test the results again.
This is a model of evidence-based practice. In the seminal essay on evidence-based practice, Sackett et al say it “means integrating individual clinical expertise with the best available external clinical evidence from systematic research.” The ABA teacher only knows things about a child that they have learned from direct clinical experience with that child. They only apply procedures which are research-based. Otherwise, they remember what they don’t know. While we wait for answers to the more fundamental questions about autism, this kind of evidence-based practice is arguably the best strategy to address the heterogeneous needs of autistic children.
Interagency Autism Coordinating Committee Looks to Improve Services Now
This article was originally published in the June 2008 print version of the Motivations bulletin.
On March 14, 2008, the Interagency Autism Coordinating Committee (IACC) met in Washington DC. The IACC is an advisory committee to the Federal government, authorized by the 2006 Combating Autism Act, to provide strategic planning to guide Federal autism spending. National Institute of Mental Health (NIMH) chairs the IACC, which includes all Federal agencies with autism programs, private foundations, advocacy groups and families. I was one of approximately 100 public observers.
On March 14, 2008, the Interagency Autism Coordinating Committee (IACC) met in Washington DC. The IACC is an advisory committee to the Federal government, authorized by the 2006 Combating Autism Act, to provide strategic planning to guide Federal autism spending. National Institute of Mental Health (NIMH) chairs the IACC, which includes all Federal agencies with autism programs, private foundations, advocacy groups and families. I was one of approximately 100 public observers.
Lee Grossman, president of the national Autism Society of America (ASA), is on the committee and made the first presentation. He called for attention to service needs of families today, in addition to research for the future. He proposed the re-creation of a services sub-committee of the IACC. A similar group in 2003 had produced a Services Roadmap (available at: www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml). Grossman said improving services today is “the primary consideration”-- we know enough about how to provide services, but we need to do better implementing what we know so quality services are accessible.
To prepare for this meeting, the IACC had requested public comments on autism priorities. Over half of the 542 responses had encouraged a focus on treatment and services. POAC of
Central Maryland submitted comments – see the Advocacy Resources page on http://www.poacofcentralmd.org/ for the full text of our response. Influenced by the public response, the IACC approved the services sub-committee, charging it to create an implementation plan for the existing Roadmap by the next meeting. While I am a member of national ASA, in the past I have been skeptical about their role, since they do not fund research or provide direct services. Listening to Mr. Grossman’s advocacy at this meeting impressed me.
Continue reading Pt. 2 below
Continue reading Pt. 2 below
Thursday, September 30, 2010
Interagency Autism Coordinating Committee Looks to Improve Services Now, pt.2
This continues the text originally published in the June 2008 print version of the Motivations bulletin.
The IACC staff presented the results of scientific workshops, which have developed 41 research initiatives. I had come to this meeting expecting to hear the reports of scientists disconnected from real life with autism. Instead, I learned that many of the committee members, public and Federal, are parents of persons with autism themselves. As a result, the research initiatives will be addressed in a framework of six questions that a parent would ask as they deal with autism in their family:
The IACC staff presented the results of scientific workshops, which have developed 41 research initiatives. I had come to this meeting expecting to hear the reports of scientists disconnected from real life with autism. Instead, I learned that many of the committee members, public and Federal, are parents of persons with autism themselves. As a result, the research initiatives will be addressed in a framework of six questions that a parent would ask as they deal with autism in their family:
When should I be concerned about my child’s development?
How can I understand what is happening to my child?
Why did this happen?
Which treatments will help my child?
Where should I turn for services?
What does the future hold?
While this framework is parent-oriented the committee noted the need to include adult individuals on the spectrum. Services for adults were a high priority topic all day, giving me hope that when my 6- and 8-year olds need those services they may be more widely available than they are today.
The sobering part of day came when the committee turned to the Strategic Plan itself. Like many people, I had thought the Plan was about how to spend the much-reported $900 million authorized over 5 years by the Combating Autism Act. At the 2007 Penn State Autism Conference, Duane Alexander, director of the National Institute for Child Health and Human Development had stated the Act would double NIH spending on autism research. That was exciting news.
However, IACC staff said that the Act actually does not approve ANY new money, since the current projects in NIH and elsewhere already spend that much. The representative from Autism Speaks disputed this, but NIMH Director Thomas Insel stated an upcoming inventory of projects would prove it. The Plan will guide how NIH targets money when current projects expire and current funds are available for the next year. So the effect of the Combating Autism Act is only that Federal government targets spending more wisely. Since the government is not actually doing more, let’s hope the IACC can guide them to do it better.
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