Functional Communication Training for Children with Autism Spectrum Disorders

Children with autism struggle with communication issues.  While these children often evidence social skills deficits and repetitive/stereotypical behaviors, many of these problem areas can be remediated if the child is taught how to use language functionally.

A functional use of language is something that is difficult to teach in the classroom, but it can be managed through appropriate procedures and strategies. We often “measure” language by asking parents and staff to identify how many words a particular child may speak; programs are then developed to increase the number of words which children on the spectrum speak.

However, this measure of assessing language in children on the spectrum (i.e., a total amount of vocabulary) gives an incomplete picture of the nature of the child’s strengths and weaknesses – it is a good start to teach vocabulary, but we need to go beyond that.

Our studies of evolutionary psychology indicate that humans are a species that uses tools; it is this tool use that sets us apart from other mammals and other species.  Language is another tool that we use to obtain what we want from the environment.

While some children speak too little and others too much, what all these children on the spectrum share is the inability to use language effectively as a tool to actualize their goals.  Some children do not have enough words to express themselves – these students need to be taught more words and when these words should be used.  Others have so many words that they do not know which ones to choose to express themselves – these students need assistance in choosing their words and using them at appropriate times.

In the absence of efficient methods of communication, many children on the spectrum resort to other means to actualize their goals.  These means are often interpreted by many of us in the schools to be destructive, rude or disrespectful.  But, using words as tools to actualize their goals is a concept that is difficult for them to understand.  So, they often perform other actions to obtain their goals.  In the most severe cases, they will injure themselves in horrific ways.  In other cases, they may yell, scream, throw things or perform any other set of actions that would be considered a “meltdown” or “tantrum”.

Fortunately there are many guides out there that are easily written and can help the practicing school psychologist.  Mark Durand’s Severe Behavior Problems: A Functional Communication Training Approach is an excellent book that has helped me tremendously when implementing Functional communication training (FCT).

FCT is a set of procedures that teach communication skills to the child as a replacement to the inappropriate actions with which he is engaging.  Central to FCT is the idea that child perform challenging responses to the environment when they: 1) lack the communication skills to convey their intent or 2) do not know which specific communication patterns should be used to convey their intent.

For example, one of the children with which our team is currently working had a goal of using the word “no” to stop activities which he did not enjoy.  While this goal may appear to be counter-intuitive, we wanted the word “no” to replace what his current response at the time was: biting staff members until their skin broke.  Conceptually, it was important for us to understand that while his reaction was extreme, his biting was the tool he used to stop activities .  Our goal was to teach him how to use another tool, which would actualize the same goal (stopping activities) better and more efficiently.

Typically, when this student was presented with a task that he usually avoided (i.e., math), he often bit staff.  What we had done initially is as he would lean in to bite, we gave him the command “Say no”.
At first any sound was rewarded with a cessation of the activity and a loud proclamation from the staff member indicating “OK, all done!”.  We walked away quickly and gave him a break for 2 – 3 minutes.  After he learned to just make a sound and not bite, we required that he approximate the sound “n”.  Soon after we ratcheted up the demands and required he say “no”, which lead to “no more” and then “no more, please”.

Our next step was to identify what aspects of the activity (math, in this instance) was so aversive, and we worked to teach him the component skills that he lacked so that he may perform the activity in the future.

Visual strategies can be used in addition to FCT or instead of FCT.  For example,  with another child, our team has developed a visual strip of common phrases that one particular child can use (e.g., “No thank you”, “Yes, please”, etc.).  When the targeted child is asked a question, he is pointed to the particular menu of phrases that he can use.  The student then can scan the phrases and can select the one he can use.  Our team does require that he use the words; failure to do so would have him too dependent on the strip.  Two very useful resources for these sets of procedures are A Picture's Worth: PECS and Other Visual Communication Strategies in Autism by Andy Bondy and Lori Frost and Visual Strategies for Improving Communication: Practical Supports for School & Home by Linda A. Hodgdon.

Overall, teaching children with autism better alternatives for communication can greatly enhance their social skills, advocacy and overall life satisfaction.

Don't be Afraid of the New Autism Diagnosis

Cathy Lord, in a piece that she wrote for the Huffington Post, said:

In the DSM-5, we propose a new way of looking at these disorders, merging them into a single diagnosis of autism spectrum disorder. We believe this will create more accurate diagnoses and improved access to services. It should also improve research into ASD, because there will be less diagnostic confusion

And I agree.  I feel that there has be undue anxiety regarding a variety of issues.  There are a host of reasons why these changes are being implemented.  For example:

1. Research suggested that there was considerable confusion among researchers, doctors, psychologists and psychiatrists regarding the criteria of PDD-NOS, Autistic Disorder, and Asperger Disorder.  Often we saw "graduations" of one disorder into the other, which tended to be problematic, often leaving people with the complex task of attempting to identify a label instead of looking to begin interventions and help the children and adults in need.
2. Emergent research suggests that Asperger Disorder and Autistic Disorder, as currently defined in the DSM-IV differ only in levels of language and/or IQ (one may argue that IQ as a construct is heavily influences by language, but that is a debate that I would leave for some of my other colleagues).  The Neurodevelopmental group of the DSM-5 argued that they did not want  diagnostic decisions to be based on IQ or language. One can argue that there is a paucity of studies that have looked at this difference (Relying on memory, I can recall roughly 15 articles in the period from 1994 - 2012), and I would argue that the reason more research is not being published in peer-review publications is that these studies are finding no difference except in language and IQ.  
3. Others have bemoaned the fact that there the DSM is dropping Childhood Disintegrative Disorder (CDD).  While there isn't a good base of experimental data to support this difference, we see that emergent case study research suggests that CDD is probably the norm.  That is to say, the group hypothesized that autism is an auto-immune disorder which kicks in within the first few months of a child's life, similar to MS which kicks in in the fourth decade of someone's life.  This might explain parents' descriptions of the disorder.  A fascinating hypothesis, which may be the key to explaining such parental reports.

I agree with Cathy Lord and the work that her Neurodevelopmental group has engaged in.

The development of mands

Over the last few weeks, I have been thinking about the development of the mand reptetoire in all children.  Typically we discuss how the mand develops in children on the spectrum, but it appears that we need to look at other issues as well.

For example, how does the mand develop in response to motor development - for example, does the development of the ambulation repetoire affect the mand repetoire in any discernable manner?  If I can walk, and experience more of the environment, will I not want more of it?  And will I not ask for more?  So if the motor skills of a child are impaired, then these children will not necessarily see as much of the world and by consequence, not mand for it.

Just some Sunday evening thoughts...

Review of "Strange Son" by Portia Iverson

Mr. and Mrs. Iverson have set up a foundation to deal with autism in their and many other individuals' chidlren. Mrs. Iverson wrote this book about her experiences with Soma Mukhopadhyay from Bangalore, India. Soma had managed to teach her severely autistic son, Tito to communicate, write poetry on a laptop, and articulate his thoughts and feelings.

Mrs. Iverson persuaded her foundation to bring Soma and 14-year-old Tito to Southern California for what proved to be an exhausting and exhaustive monthslong effort by a network of neuroscientists and well-wishers to anatomize the miracle that was Tito. But few miracles withstand minute dissection, and this one was no exception.

For one thing, the young poet was still an immensely dysfunctional adolescent who could not remain still for most neurological testing, who was besieged by erratic impulses (like trying to jump out of a minivan speeding down a California freeway) and who became unhinged whenever he was separated from his mother.

His mother was a loner and a bit of an oddball, whose method of cajoling intelligent communication from Tito depended on an alphabet board and a frenetic combination of shouts, gestures and taps on the knee.

But, when Soma finally sat down with Mrs. Iversen’s Dov and begins to prod and cajole him just as she does Tito, their frighteningly inaccessible and uncontrollable child began to use an alphabet board to tap out logical human thoughts.

He wanted a Barbie doll and a blue blazer. He identified that he had known how to read English for three years. His favorite color is red. He thinks his little brother is spoiled rotten. After a few weeks he drops Barbie like a shot when he learns that dolls are for girls.

We learn that Soma’s method works better for some autistic children than others, and is nowhere near being a panacea.

I havent read the book, but it may be interesting. Those of you who have, please drop me a line

Autism and Evidence Based Interventions: A Matter of Social Justice

I recovered my mail this morning and saw a flyer for a conference here in New York City on Autism and Early Childhood/Interventions. I was pretty interested, until I opened up the pamphlet to read what was being presented.

There is a full-day presentation on the Son-Rise program, and another one on the PLAY program. There were various break-out sessions on DIR (the Developmental, Individualized and Relationship Oriented model of Stanley Greenspan). There was also a seminar on the integration of chiropractic care in the treatment of autism.

These programs, models and various types of care have no evidence to support them. There is no study that has documented that any or all of these studies will work better than Applied Behavior Analysis, which is the treatment of choice for children with autism.

I do not have a child with autism. I cannot imagine fully the extent that these parents suffer and how they yearn for a treatment that will solve everything, immediately. However, there is no evidence that any of the treatments I mentoned before (e.g., Son-Rise, DIR, chiropractic treatment) do anything to help children with autism. In fact, since the implementation of these strategies means displacing strategies that do work (i.e., Applied Behavior Analysis), it is most possible that these new strategies could be damaging.

Imagine if you were diagnosed with a very bad case of diabetes, and you stumbled upon an ad online which reads, "Stop your insulin right now, and try this new technique, which will help you cure your diabetes". Would you do it?

Would you still try the new treatment if there were no studies to document that the treatment actually did anything to improve diabetes? OK, so how about this question: will you risk being off the treatment that works (e.g., insulin medication managament) in order to try the new medication/treatment?

The answer is no.

Not implementing evidence based interventions is also dangerous when viewed through a social justice framework. These interventions cost a great deal of money, and people who are not financially capable may be pressed into undue economic stress in order to implement programs and expensive consultations which they believe may help their children.

For example, a prominent school in Manhattan which implements DIR techniques costs over $70,000/ year. While parents can petition their school districts to re-pay the money, the school demands this money up front.

This means that people who do have a child with autism (and have been duped into believing that DIR does work) will be forced to do things they may not normally do (dip into college funds, life insurance policies, etc.) because they have been given wrong information. None of those treatments listed in the second paragraph have been demonstrated, scientifically, to work better than other treatments out there.

It is society's responsibility to ensure a basic quality of life for all its citizens, especially those with disabilities. In this society, those who have a degree and purport that these technologies work are acting unethically and immorally. Those people have a moral responsibility to report that which treatments work and which do not.

In order to do so, we need to implement ideas, interventions, and treatment programs that will work effectively and will not strain those in economic hardship.

Mirror Neurons and ASD

The discovery of premotor and parietal cells known as mirror neurons in the macaque brain that fire not only when the animal is in action, but also when it observes others carrying out the same actions provides a plausible neurophysiological mechanism for a variety of important social behaviors, from imitation to empathy.

Recent data also show that dysfunction of the mirror neuron system in humans might be a core deficit in autism, a socially isolating condition. Here, we review the neurophysiology of the mirror neuron system and its role in social cognition and discuss the clinical implications of mirror neuron dysfunction.

NJ Assembly Speaker Joseph Roberts Jr. seeks action on autism

As has been documented in many CDC studies, the rate of autism is highest in New Jersey (and here in New York, in Staten Island). The most recent CDC study found the rate of autism to be 1 in 152 nation-wide, but in NJ, the rate was 1 in 94 children. Researchers are puzzled as to why the rate is so high.

Speaker Roberts put together a package of seven legislative bills to support autism treatment measures. They include:

• The establishing a statewide autism registry.
• The training of teachers in autism awareness.
• The creation of a task force on adult autism.
• Requiring autism awareness training for emergency personnel.
• The provision more money for the Governor's Council on Autism, which spend $4 million per year.
• The instruction of doctors in early detection.
• The revision of the seven-person Governor's Council on Autism to add two more members and diversify membership.

I applaud Speaker Roberts' initiatives, however, I'd like to hold off judgement in order to review the bills. Specifically, I would like to see evidence based interventions as the basis for training teachers and emergency personnel; I'd also like to see where this money will be going. For instance, there should be some money earmarked to examine why the rate is so high in NJ, as well as money provided for the intensive treatment of autism.

Furthermore, I would be interested to see how this bill would affect school psychologists who are practicing in New Jersey.

Autism May Be More Prevelant Than Previous Estimates, CDC Report says

The Centers for Disease Control and Prevention (CDC) reported findings today from the first and largest summary of prevalence data from multiple U.S. communities participating in an autism spectrum disorder (ASD) surveillance project. The results showed an average of 6.7 children out of 1,000 had an ASD in the six communities assessed in 2000, and an average of 6.6 children out of 1,000 having an ASD in the 14 communities included in the 2002 study. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.

For decades, the best estimate for the prevalence of autism was four to five per 10,000 children. More recent studies from multiple countries using current diagnostic criteria conducted with different methods have indicated that there is a range of ASD prevalence between 1 in 500 children and 1 in 166 children. The CDC studies provide information on the occurrence of ASDs in fourteen communities in the United States.

"Our estimates are becoming better and more consistent, though we can't yet tell if there is a true increase in ASDs or if the changes are the result of our better studies," said CDC Director Dr. Julie Gerberding. "We do know, however, that these disorders are affecting too many children."

Overall, the 2000 study found ASD rates ranged from one in 222 children to one in 101 eight-year old children in the six communities studied.

The 2002 study found ASD rates ranging from one in 303 to one in 94 among eight-year old children. The average finding of 6.6 and 6.7 per 1,000 eight-year-olds translates to approximately one in 150 children in these communities. This is consistent with the upper end of prevalence estimates from previously published studies, with some of the communities having an estimate higher than those previously reported in U.S. studies.

ASDs are developmental disabilities and are defined by considerable impairments in social interaction and communication and the presence of unusual behaviors and interests. They can be diagnosed as early as 18 months and last throughout a person's life. ASDs include autistic disorder, pervasive developmental disorder - not otherwise specified (PDD-NOS, including atypical autism), and Asperger syndrome.

The 2000 study included approximately 4.5 percent of U.S. eight-year-old children born in 1992 from six states - Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia. A total of 1,252 eight-year olds were identified as having an ASD.

The 2002 study included approximately 10 percent of U.S. eight-year-old children born in 1994 from 14 states - Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia and Wisconsin. A total of 2,685 eight-year-olds were identified as having an ASD.

"It is extremely difficult to accurately estimate the number of children who have an ASD," said Dr. Marshalyn Yeargin-Allsopp, chief of CDC's autism program. "Medical records often do not provide such information, and identification is often made by schools or education specialists.

The data reported today by the Autism and Development Disabilities Monitoring (ADDM) Network was designed to provide more consistent and reliable estimates."

"It's important to note that these studies don't provide a national estimate, but that they do confirm that ASDs in the areas surveyed are more common in these communities studied than previously thought," said Yeargin-Allsopp. "We need to continue efforts to monitor the prevalence of ASDs and to improve our understanding of these disorders. Good estimates of how many children in a community may have an ASD will also help school and health officials in their planning and intervention efforts."

The purpose of CDC's ADDM project was to develop a system for better understanding the size and characteristics of the population of children with an ASD.

In addition to trying to measure the number of children with an ASD, the studies also looked at when parents and others first noted signs of developmental concerns in their children. The 2000 and 2002 studies found 51 percent to 88 percent of children with ASDs had documented developmental concerns before the age of three. Half of the children were diagnosed with an ASD when they were between four and one half and five and one half years old. The most commonly documented concerns were in language development, followed by social development.

"We don't know the causes of ASDs, but we do know that if we can identify autism and other developmental problems in children early, they can begin receiving appropriate interventions sooner," said Yeargin-Allsopp. "It is important for parents, health care professionals and childcare providers to recognize developmental milestones such as smiling, pointing and waving bye-bye. It's also important that health care professionals give children routine developmental and autism-specific screenings."

While these studies did not investigate the causes of ASDs, CDC's Centers for Autism and Development Disabilities Research and Epidemiology (CADDRE) Network is doing a multi-state study to help identify factors that may put children at risk for ASDs and other developmental disabilities.

This project is being conducted by CDC, University of Alabama at Birmingham, University of Arizona at Tucson, University of Arkansas, Colorado Department of Public Health and Environment, Johns Hopkins University, Washington University in St. Louis, University of North Carolina at Chapel Hill, University of Medicine and Dentistry of New Jersey in Newark, University of Pennsylvania School of Nursing, Medical University of South Carolina, University of Utah, Marshall University and the University of Wisconsin-Madison. Six sites participated in the 2000 project, and an additional eight were added for the 2002 project.

CDC also has a public awareness campaign titled, "Learn the Signs. Act Early" designed to increase the awareness of child development by educating parents, health care professionals and childcare providers on the importance of tracking a child's social and emotional development, including the potential early warning signs of autism and other developmental disabilities.

Chelation treatment video

So, I'm still not convinced that this treatment is workable, but I am encouraged to see that someone is conducting a study on chelation, which is double blind. Click here to see this MSNBC video.

I'd be interested in hearing your thoughts on the matter.







Technorati tags: chelation, autism, Asperger, intervention, MSNBC

Asperger's disorder ruled to be a disability by a federal judge

One of the issues that has plagued many school officials working working with children with Asperger's disorder is whether or not this disorder actually meets the criteria for a legal disability as per IDEIA.

In Maine, a federal judge has provided some guidance:

• A York County girl who suffers from Asperger's syndrome is entitled to special education services even though she completes her homework, behaves well in class and scores well on tests
• The judge in the case said that the girl's parents demonstrated that the disability adversely affects her educational performance "and is thus eligible for special education under (federal law) due to her Asperger syndrome and her depressive disorder." (note: the article does not indicate under which classification disability category Asperger's syndrome is subsumed).
• The ruling described Asperger's as a "clinically recognized pervasive developmental disability" with symptoms that include "limited interests or an unusual preoccupation with a particular subject to the exclusion of other activities."
• The girl in this case, who attended public schools in Hiram and Cornish through 5th grade, performed well academically but in the fourth grade her teachers noticed that she looked sad, anxious and had a difficult time making friends.
• The decision recognizes that social development is an important part of education

Of course, the ruling should have broad impact in many areas, specifically in the fact that case law is recognizing and shaping the fact that Asperger's Disorder has educational impacts that go far beyond reading, writing and math.











Technorati tags: autism asperger special education IDEA IDEIA