“Therapies,” “techniques,” and “treatments” used with people with “autism” present themselves like shops along the High Street; they have little relationship to one another and each shop will encourage you to shop at their store and tell you why their product is the product.
But each of these shops sells something quite different from the next. Some deal with behaviors, some with brain development, some with biochemistry, some with cognition or with the mind and some with the soul—and some don’t deal with anything but make a good job of appearing to.
The problem with services behaving like High Street shops is that people with “autism” don’t just have problems with behavior or communication or perception or their senses or with brain development or with biochemistry, or with stress levels or with troubled souls. Because people with autism are whole beings, most of them have trouble with the whole lot, which all interconnect and feed into each other at some point.
To get any all-round service, people with autism don’t need a High Street of competing shops, they need a department store where each department is aware of what the others offer and points people in the direction of other services which complement their own.
—DONNA WILLIAMS, Autism: An Inside-Out Approach
WHEN Jeremy first stood up and walked on his own, his first steps were not toward me. He got up and followed the patterns in the rug. We were living in Paris at the time, and psychoanalysis was the treatment on offer to cure Jeremy’s autism. When my husband was offered the opportunity to work on Legoland in Berkshire, we jumped at the chance to move to England, where at least Jeremy could attend a special needs school. Soon after arriving in England, I read Let Me Hear Your Voice by Catherine Maurice, and I also met Cathy Tissot, whose autistic son attended the same school as mine. Neither of our children were progressing at school and so we decided to try the Lovaas program, a home-based applied behavior analysis (ABA) program. At that time, ABA programs were still relatively new and we were one of the first families in the UK to go this route.
I remember going to cathy’s house one evening, trying to get up the nerve to call the Life Institute, the Lovaas center in California, to find out if there was a consultant who could come and put on a workshop to train us and students to work with our children.
Making that phone call changed my life. That was the moment when I stopped being a victim of the systems in place, took control, and realized I was not powerless to help my son.
As a child, Jeremy had many challenges, and he continues to have some. We have tried different biomedical, dietary, and homeopathic treatments; different educational strategies; sensory therapies; occupational, physical, and speech therapy—anything that made sense to help Jeremy, based on his needs. Some have been very helpful, others have not. As he learned to communicate and type, he was able to tell us what the therapies felt like for him and what he felt was useful. Now that he is a young man, he decides what he would like to try or continue to help him in becoming more independent and reaching his goals.
How to Know What Will Help
In the past, there were practically no options for people with ASD in terms of treatments, therapies, and interventions, and this was the source of much anguish and stress. Nowadays, although we still don’t know the cause of autism, we know more about what can help people, depending on the symptoms they are showing. Options abound, and the challenge is more about getting the right information and trying to decide what best fits the needs of the person with ASD, before figuring out how to access that treatment or therapy.
In Chapter 4, where and how to get information was discussed. In this chapter, you’ll learn more about how to know what can help a particular person with ASD, and about some of the different treatment and therapy options that are available.
Knowing About the Person with ASD
Although there are more therapies and strategies now than ever before, there is still no magic bullet, and every person is different. If you are a person on the spectrum who is fully functional and has no health, emotional, or relational issues: Congratulations! You can skip the rest of this chapter.
Other adults with some challenges may find some useful information here. Many very able people on the spectrum suffer from sensory challenges, gut issues, allergies, anxiety, and panic attacks.
Parents and educators, the first thing you need to do is to look at the person with ASD whom you are trying to help, no matter how young or old he or she is. As discussed earlier in this book, autism is now generally accepted to be a whole-body expression, as a result of genetic predisposition with an environmental impact coming into play. For years, scientists focused only on teaching or psychological strategies and not medical or dietary interventions. As more is discovered about autism, including the gut and brain connection, the more options a parent should consider. Being a parent means becoming an expert in what can help your child.
Here are some things to consider:
As Donna Williams suggests in the quote taken from her book Autism: An Inside-Out Approach at the beginning of this chapter, all these therapies, treatments, and interventions truly need to be looked at with a department-store mentality, rather than a High Street approach. ASD is all-invasive, and rarely does one therapy alone provide all the help a person needs. Therapies or treatments are not exclusive of others, and a visit to different departments or types of therapies is often needed.
What to Consider When Looking at Treatment Options
After looking at the needs of the person with ASD, there are other factors to consider before deciding on what treatments and therapies to pursue at this particular time. Here are some things to consider when looking at treatment options:
FOOD FOR THOUGHT
She Had Experience, Just Not the Right Kind
My son is very challenged by sensory integration issues and has many fine and gross motor problems. One year he came home from high school with rug burns on his chest and back, the result of an inexperienced occupational therapist’s attempts to perform sensory integration on him. After a few phone calls (and I must say no apology from the therapist or the school district in question), two individualized education program (IEP) team meetings, and a sensory integration (SI) and occupational therapy (OT) assessment, another occupational therapist was brought into the picture. At this point, concerned not only about the quality of my son’s educational experience but also for his safety and comfort level, I asked the proposed therapist specific questions about her experience. The therapist said she had a few years of experience with sensory integration, as well as working with adolescents with autism. All seemed well with the world.
After a few months, I received reports from the school that the therapist was concerned about the occupational therapy goals for my son. She felt the goals were unrealistic, and that he was not progressing on any of them. The goals the IEP team had identified were fastening buttons and snaps on his pants and learning to cut with a knife. I met with the therapist to ask how I could help. After chatting with her, I realized that though she had worked with adolescents with ASD, they had been able students who could follow instructions and did not have the same level of motor difficulties as my son. The therapist had not needed to teach these skills before and was unable, in spite of her professional training, to figure out a way to teach my son these basic tasks. I had not thought before to ask about the ability level of the children she had worked with, thinking that as a professional she could figure things out for varying levels of ability.
The therapist was at a loss about how to teach my son, even though he had a well-trained school aide who was more than willing to help. Needless to say, my son learned to fasten the snaps on his pants after the aide analyzed the different steps, identifying which ones were creating difficulty for him, and then wrote up a task analysis and worked on teaching him this skill in a systematic manner.
So, the moral of the story is, ask the right questions. No matter how long my son has been in the system, I am always learning a few more questions that I should have asked.
Treatments, Therapies, and Interventions
This is not meant to be an in-depth overview of all the treatment options, but rather a brief explanation about the most well-known or currently popular ones. Resources are included for those who want more information. Therapies and interventions are listed here for informational purposes only, and this does not mean that they are endorsed by the author or that they are prescribed for any particular person. The reader should investigate further the treatments that interest them and make an informed decision with professionals and others who may be concerned.
General Resources
If you are a parent, you’ll have to become an expert in treatments and educational strategies. In this chapter, I’ve outlined some basic information. Keep in mind that there are more treatments and therapies available than are listed here. This chapter covers the most widely known and recognized treatments to give you the basic knowledge you need to start your understanding and search for help. Again, remember to keep you child in mind, as well as who you are getting the information from. Remember that the treatment of autism is a growing and changing field, and new discoveries are continually being made. Make sure you are getting the most current information. In the end, you will have to decide how to best help your child.
Here are some websites and books for a more in-depth understanding of options to consider. Following each treatment section are more specialized resources.
Healthy Bodies
Effective teaching methods are extremely important, but so is physical and neurological health. In Chapter 3, possible causes of autism were discussed, as was the brain–gut connection. If a child is experiencing pain or if the body is not absorbing needed nutrients, learning can be difficult, if not impossible. Remember that behavior is a form of communication. If a person often has tantrums for no apparent reason, it could be that he or she is in pain of some sort. Some children’s digestive systems are not working properly, making it impossible to digest essential nutrients needed for brain development. If a child has sensory challenges, this will impact everyday life. Scientists are hard at work discovering all the secrets the brain has to offer, and much is still unknown. However, as there is a definite connection between the body and the brain, a healthy body is a priority.
Before starting any of these interventions, data should be taken over at least a two-week period on all of the person’s negative (tantrums, hyperactivity, bedwetting) and positive (communication, interactive play, staying on task, eye contact) behaviors. This will give a baseline of the behaviors before treatment. During and after treatment, the same types of notes should be taken. This will enable you to judge whether or not the treatment is having any effect.
Dietary and Nutritional Approaches
It’s a given that a nontoxic environment is best for all, and that we are what we eat. Many on the spectrum are particularly sensitive.
What follows is a basic overview of some of the dietary and nutritional approaches that are being used to treat ASD. Some of these approaches have empirical research to back them up. Some have much anecdotal testimony. Some of these approaches are noninvasive and worth trying; others should only be done under the care of a knowledgeable health professional.
These approaches can be effective in helping people whose metabolic systems may not be functioning properly. It may be that their systems are not processing essential nutrients properly, possibly because of a food allergy or intolerance, a “leaky gut” (where the wall of the intestine does not do its job of keeping its contents separate from the bloodstream), or high levels of mercury or other toxic metals. It is possible to check for food allergies by adding or removing the suspected culprit from the person’s diet and taking data on their behavior before and after. Essential nutrients can be tested in the same way. However, there are specific tests and analyses that can be done that are more indicative of what is going on in the metabolic system.
Dietary and nutritional interventions can be confusing for anyone who is not medically inclined. Please keep in mind that what follows is not a complete analysis of all the possible interventions, and that interventions are constantly being improved upon.
Eating Healthy
The general public over the last ten years has learned more and more about the importance of making good food choices, from eating organic foods to consuming less sugar and fewer additives. As humans, we need certain fundamental nutrients for our bodies to function well and these include certain vitamins and minerals, essential fatty acids, and amino acids (from protein). These essential nutrients can be found in a balanced diet rich in fruits and vegetables, protein, and certain fats.
FOOD FOR THOUGHT
The Power of Sharing Knowledge
Thirty years later, Dr. Rimland and I had lunch down the street from my home and office in Connecticut. I expressed how inadequate I felt in understanding the digestive and immune system problems of the autistic children I was seeing in increasing numbers. I asked Dr. Rimland if he could gather some smart people to brainstorm the problems. I knew one smart person, Jon Pangborn. Bernie knew dozens around the world. Within a few months he had organized and named the first DAN! meeting, an extraordinary gathering of thirty practitioners, researchers, and parents who found common ground in a new map of the landscape that emerged from the mirage that once simply cast blame on mothers.
—Sidney MacDonald Baker, MD, from the Defeat Autism Now! 2002 Conference Presentations Book
Eating healthy is a good starting point. Some guidelines:
The Feingold Diet
This diet was developed by Dr. Ben Feingold to treat hyperactivity in children. In his book Why Your Child Is Hyperactive, he recommends removing artificial colorings and flavorings, salicylates, and some preservatives from children’s diets. Salicylates are a group of chemicals related to aspirin and found in certain fruits and vegetables. His hypothesis was that more and more children were being seen and treated for hyperactivity at the time the book was published due to the increase in artificial ingredients being added to our food and the increase in the consumption of processed foods. The Feingold Association of the United States (feingold.org) can provide further information.
Gluten-Free/Casein-Free (GFCF) Diet
The GFCF diet has been developed for individuals who have allergies or a toxic response to gluten (found in wheat, oats, rye, and barley, among others) and casein (found in dairy products).
Responses to gluten and casein can include diarrhea, constipation, hyperactivity, red face or ears, breaking wind frequently, and pale skin. (However, it is important to note that these symptoms can be an indication of other problems.) Basically, peptides that are derived from an incomplete breakdown of certain types of food are affecting neurotransmission within the central nervous system. Research studies as well as hundreds of anecdotal reports have shown dietary intervention as a useful treatment for alleviating some of the symptoms of autism in children. Out of 3,593 reports on the GFCF diet submitted to Autism Research Institute (ARI) Survey of Parent Ratings of Treatment Efficacy, 69 percent of children fared better and 28 percent saw no change. It is less clear what the effect is on adults. This type of treatment, though constraining in terms of diet, is not harmful, and it may be worth removing gluten and casein from your child’s diet to see if it has an effect on his behavior. It is recommended to remove 100 percent of dairy for one month and gluten for three months. There are lab tests that can be done as well. Some individuals have challenges with corn, soy, and other foods. To follow this diet accurately and to ensure that all products are GFCF, it is important to carefully read product labels.
For practical information and support from other parents who have experience in this area, visit tacanow.org/tag/gfcf.
RESOURCES
Autism Network for Dietary Intervention: autismndi.com
Special Diets for Special Kids by Lisa Lewis
Nourishing Meals by Alissa Segersten and Tom Malterre
The Kid-Friendly ADHD and Autism Cookbook by Pamela Compart, MD; Dana Laake, RDH, MS, LDN; Jon B. Pangborn, PhD, FAIC; and Sidney MacDonald Baker, MD
Digestive Wellness by Elizabeth Lipski
The Specific Carbohydrate Diet (SCD)
The SCD is based on the diet that early man ate before agriculture began and consists of meat, fish, eggs, vegetables, nuts, and low-sugar fruits. The SCD consists basically of avoiding all carbohydrates and most sugars (except monosaccharides in fruit). Some individuals with autism have low levels of digestive enzymes for certain sugars and carbohydrates. It makes sense to consider the SCD in patients who do not respond well to a GFCF diet. To insure proper implementation of the SCD, it is recommended to find an experienced nutritionist to help you.
RESOURCES
Breaking the Vicious Cycle by Elaine Gottschall
breakingtheviciouscycle.info/home
pecanbread.com
The Ketogenic Diet
This diet has been developed for people who have seizures. It is high in fat, low in protein and carbohydrates. When the body burns fat instead of carbohydrates for energy, it creates ketone bodies, which in turn suppress seizure activity. This is not a healthy, balanced diet; it is difficult to undertake, and it has to be tailored specifically for each person. It is usually considered to be a last-ditch effort when medications are no longer effective, and should not be attempted without the supervision of a neurologist and a knowledgeable dietician.
RESOURCES
epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet
Ketogenic Diets by Eric H. Kossoff, MD; John M. Freeman, MD; Zahava Turner, RD, CSP, LDN; and James E. Rubenstein, MD
Vitamin and Mineral Supplements
As explained earlier, proper nutrition is necessary. However, the typical U.S. diet is lacking in needed vitamins and minerals. One way to get more vitamins and minerals is by juicing vegetables and fruits. Another way is by taking supplements. Not all supplements are created equal. Some manufacturers of supplements voluntarily participate in the Dietary Supplement Verification Program (DSVP) of the U.S. Pharmacopeia (USP). The USP is a program that verifies that the contents of a supplement match the label. Check for a USP or DSVP label, or go to usp.org/USPVerified to check a product.
Vitamin B6 and Magnesium
This is one of the most studied nutritional supplements, with twenty studies published since 1965. These studies have shown benefits to taking vitamin B6 (often combined with magnesium), and none have shown harm. In fact, almost all of these studies found that 30 to 40 percent of children and adults with autism benefited from high-dose supplementation of vitamin B6 with magnesium. Some of the benefits reported have been improved eye contact, improved language, reduced self-stimulatory behavior, reduced aggression, and reduced self-injurious behavior.
Essential Fatty Acids
It has been recognized that EFAs are critical nutrients that have a very important role to play in the metabolism and development of the body. However, due to the way our foods are now processed plus the fact that we do not swallow a daily spoonful of cod liver oil the way our grandparents did, it has become apparent that most of us are not getting the fatty acids our bodies need.
Two general categories of essential fatty acids are omega-3 and omega-6. There are many scientific studies showing that people need EFAs, and that most in the United States do not consume enough. Four published studies have found that children with autism have lower levels of omega-3 fatty acids than the general population. To date, there have been nine treatment studies for children/adults with autism on the effects of EFAs, six positive and three inconclusive or negative.
Other Vitamin and Mineral Supplements
For more information on research, and the importance of the many other different vitamins and minerals, read “Summary of Dietary, Nutritional, and Medical Treatments for Autism—Based on Over 150 Published Research Studies” by James B. Adams, PhD (autism.asu.edu/Docs/2012/Summary_dietary_nutritional_medical_treatments9-30-12.pdf).
Other Nutritional and Medical Treatments
There are other important nutritional and medical treatments that have been effective for some, and ineffective for others, and parents need to figure out what could be useful for their child. These treatments include probiotics, digestive enzymes, amino acids, carnitine, melatonin, thyroid supplementation, sulfation therapies for methylation/glutathione/oxidative stress, immune system regulation, and hyperbaric oxygen therapy (HBOT). There is not space here for an in-depth discussion of the treatments, but there are resources below with specific information on each treatment.
As a parent, you are an expert on your child. As a parent of a child with autism, you’ll need to do the homework on what could help your child. Reading studies and discussing with knowledgeable professionals and parents is necessary. Below are good resources for parents to consult for a more in-depth understanding of the options available.
“Summary of Dietary, Nutritional, and Medical Treatments for Autism—Based on Over 150 Published Research Studies” by James B. Adams, PhD (autism.asu.edu/Docs/2012/Summary_dietary_nutritional_medical_treatments9-30-12.pdf). This is a clear summary of the rationale and research on dietary, nutritional, and medical treatments, and should be read by anyone considering the above approaches.
Nutritional Supplement Use for Autistic Spectrum Disorder by Jon B. Pangborn, PhD. This is published by the Autism Research Institute, founded by Dr. Bernard Rimland. Dr. Pangborn is not a medical doctor, but has been associated with the Autism Research Institute for over thirty years and practiced as a licensed and certified nutritionist (in Illinois).
Talk About Curing Autism (tacanow.org), founded by Lisa Ackerman, is a very supportive resource for families. The website has lots of information including an autism journal to help understand about possible treatments, and support groups around the country. Again, as a parent you will need to chose what makes sense for you and your child.
Medical Academy of Pediatric Special Needs (MAPS) (medmaps.org): Practitioners are listed here as well as training opportunities for medical professionals.
—To find practitioners by geographical area, visit the websites of MAPS, Autism Society of America, and Autism Speaks.
—For a list of what to consider when searching for practitioners, go to the ARI website (autism.com/index.php/treating_finding).
Conventional Medications
Medications can be used to treat some of the behaviors associated with autism. Certain drugs are used to control seizures. For some people, drugs can be helpful for reducing anxiety, obsessive-compulsive behaviors, hyperactivity, self-injurious behaviors, attention deficits, and depression. Medications used include anticonvulsant drugs, stimulant medications, tranquilizers, antidepressants, and opiate antagonists. No medication should be tried without the advice of a knowledgeable physician familiar with ASD and the person being treated. As well, these medications should be part of an overall treatment program, as these medications may help with symptoms but do not always address the cause. Most of these medications should be tried in very tiny doses, less than the manufacturers’ recommendation. Care should be given especially when treating young children, as many of these medications have only been researched for use in adults.
For more information on particular drugs, read the section on psychiatric medications in “Advice for Parents of Young Autistic Children” (2012, Revised) available at the ARI website at autism.com/index.php/understanding_advice.
Addressing Sensory Processing Challenges
Jean Ayres, an occupational therapist, first described sensory integration dysfunction as a result of inefficient neurological dysfunction. The auditory, visual, tactile, taste, and smell senses are what give us information about the world around us. Individuals with sensory disorders have senses that are inaccurate and send false messages. Children and adults with hypersensitivity overreact to stimuli, while others have hyposensitivity, which prevents them from picking up information through their senses. Sensory malfunction can also be an inability to understand and organize sensory information when it is received. Sensory integration dysfunction symptoms are many and varied, depending on which sense or senses are perturbed. When he has auditory sensitivities, a child may cover his ears, overreact or underreact to noise, or try to escape from groups. Tactile sensitivities can be indicated by a seemingly high tolerance for pain, refusal to keep socks and shoes and sometimes clothes on, difficulty in brushing teeth and hair, or dislike of having hair washed. Visual issues may be apparent if a child is sensitive to light, likes to watch things spin or move (tops, hands on a clock), spins himself or other things, or turns lights on and off. These are just a few examples of behaviors that display sensitivities in certain areas.
Sensory issues are not autism-specific, and therefore the methods below were not specifically developed for people with autism. Many children and adults who have sensory disorders do not have ASD.
There is a strong connection between sensory processing and learning. If a child cannot visually or auditorily process information correctly, it will be difficult for him to learn. For some it will be hard to function in certain environments. There is a connection between visual processing and how we move in space, and hand-eye coordination. This impacts emotional development as well. Sensory processing challenges are significant for many on the spectrum, impeding their ability to learn and to function on a daily basis.
Some sensory challenges may be improved by dietary and nutritional approaches discussed earlier in this chapter. It is important that you choose therapy providers who have experience with ASD and the age group of the person seeking treatment.
Sensory Integration (SI)
This is practiced by occupational therapists, who contend that many behaviors exhibited by children and adults with autism are an attempt to avoid certain types of sensations or seek preferred stimuli in order to balance out their nervous system. Occupational therapists who are well trained in sensory integration behavior and skills use various strategies to assist individuals with ASD to process and use sensory information. Data from patient records show these improvements. SI can be a valuable intervention, integrated into a child’s program, depending on the person’s sensory issues.
RESOURCES
The Out-of-Sync Child and The Out-of-Sync Child Has Fun by Carol Stock Kranowitz (out-of-sync-child.com)
Raising a Sensory Smart Child by Lindsey Biel, OTR/L, and Nancy Peske (Sensory Smarts: sensorysmarts.com)
Auditory Integration Training (AIT)
These methods, developed by Dr. Guy Berard and Dr. Alfred Tomatis, are based on the theory that some people have hypersensitivity toward certain sound frequencies, making some common sounds painful to hear. In AIT, individuals wear headphones and listen to modulated sounds and music, with certain frequencies filtered out. This is done over a period of time. It is not known exactly how it works, physiologically speaking; however, individuals have reported benefits from these listening methods. An ARI review of twenty-eight reports of studies undertaken between 1993 and 2001 on AIT developed by Dr. Berard favors this method as a useful intervention. Other listening programs have been developed that can be used at home without any special equipment, and some are listed below.
RESOURCES
Dr. Berard: berardaitwebsite.com/index.htm
Dr. Tomatis: tomatis.com
The Sound of a Miracle by Annabel Stehli (about her daughter’s recovery from autism through AIT)
Listed below are two programs that have been developed for home and school use. For more information, read about the different types of programs and ask professionals and parents who have used them about the benefits and drawbacks of each of the different methods.
Samonas Auditory Intervention: listening-ears.com/samonas.html
The Listening Program: advancedbrain.com/the-listening-program/the-listening-program.html
Vision Therapy
Vision processing is important for learning, for making sense of the world around us. As Dr. Carl Hillier puts it, “Eyesight is the ability to discriminate the differences between the small things. Vision is the ability to derive meaning from the world, and to guide the intelligent movement of the body.” A regular eye exam will tell you if your child has 20/20 vision, but it won’t tell you if your child is having visual-processing difficulties. An assessment should be done by a developmental optometrist. If needed, vision therapy will be recommended. Vision therapy is an individualized treatment program designed to correct visual-motor and/or perceptual-cognitive deficiencies.
RESOURCES
To find a developmental optometrist, go to covd.org.
To learn more about vision versus eyesight, read “Vision and Its Valiant Attempt to Derive Meaning from the World” by Carl G.Hillier, OD, FCOVD, at visionhelp.com/vh_add_07.html.
To find out more about vision therapy, go to visionhelp.com.
To read about the connection between vision and development and learn some activities to try with your child, read Visual/Spatial Portals to Thinking, Feeling and Movement by Serena Wieder, PhD, and Harry Wachs, OD.
FOOD FOR THOUGHT
The Verbal Behavior Approach
BY MARY LYNCH BARBERA, PHD, RN, BCBA-D
The verbal behavior (VB) approach is a type of applied behavior analysis (ABA) program used to teach children with autism. More than five hundred articles published since 1985 concerning ABA and autism have elevated ABA to be the treatment of choice for children on the spectrum, especially young, newly diagnosed children (Lovaas Institute, 2013).
The move toward the VB approach (as opposed to more traditional ABA programs) began in 1998 with the publication of Teaching Language to Children with Autism or Other Developmental Disabilities (Sundberg & Partington, 1998). Since the late ’90s, with more published research studies and VB books including The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders (Barbera & Rasmussen, 2007) and The Verbal Behavior Milestone Assessment and Placement Program (Sundberg, 2008), many home and school ABA programs are now using the VB approach.
I am often asked, “Which is better, ABA or VB?” I say that this is like asking, “Which is better, a pet or a cat?” In a nutshell, ABA is the science of changing behavior and VB is a type of ABA, just as a cat is a type of pet. As a BCBA, I follow the principles of ABA first and foremost, but I also use B. F. Skinner’s analysis of verbal behavior (or, in easier terms, the VB approach) as I assess and teach language and learning skills (Barbera, 2009). After working with hundreds of children and some adults on the autism spectrum, I have found that implementing scientifically proven ABA/VB techniques results in improvements in behavior, language, and learning skills no matter what the age or ability level of the child.
It all started in 1957, when B. F. Skinner published his classic book titled Verbal Behavior. This book described language as a behavior and defined verbal behavior as any behavior mediated by a listener. One thing to keep in mind is that a child does not need to speak to be “verbal” since verbal behavior includes gestures, sign language, exchanging pictures, and pointing. A child who falls to the floor or hits you is also displaying verbal behavior. As long as a listener is present and a child is displaying some behavior to communicate, that behavior is verbal behavior.
In Verbal Behavior, Skinner coined the term “verbal operant” and created names for the four elementary verbal operants: the mand, tact, echoic, and intraverbal. These four verbal operants are the parts of verbal behavior that traditional linguists and speech therapists often call “expressive language.” Skinner also described “listener responding,” which is equivalent to receptive language.
Using the VB approach, both receptive and expressive parts of language are seen as behaviors that can be taught with each function of the word being taught directly. The various functions of the word “ball,” for example, would be taught usually by using verbalization or sign language. The child would be taught to ask for or, in VB terms, mand for the ball when he wanted it. Once the mand is mastered, the child would then be taught to label (tact) a picture of a ball, to say (echo) “ball” when the adult said “ball,” to touch the ball when directed to do so, and finally to answer questions (respond with an intraverbal) about a ball.
When starting a VB approach program, it is important to assess what items and activities your child likes and to pair the work area, the people who interact with your child, and the materials with these items. Once the reinforcers have been identified and paired, the central theme for a VB approach is to teach your child how to request things since the mand should be the centerpiece of VB programming.
Because the teacher and parents focus on pairing and manding, the child should willingly approach them, as opposed to some other programs where the child is brought to the worktable, whether he wants to be there or not. In the VB approach, the child immediately starts receiving the things he likes. Once this relationship has been established and the child is responding to and asking for reinforcers, other work is slipped in very gradually.
Studies show that children with autism, in order to make optimal progress, require up to forty hours per week of school and/or home-based ABA programming with well-trained therapists and oversight by skilled professionals. But, for a variety of reasons, including lack of skilled professionals and financial constraints, many families cannot implement full ABA programs. But, even without implementing forty hours per week of ABA/VB programming, there are several scientifically proven techniques (such as focusing on the mand first) that parents and teachers can immediately begin using to help children with autism and related disorders.
Mary Lynch Barbera, PhD, RN, BCBA-D, offers a unique perspective as a parent of a child with autism, a Board Certified Behavior Analyst, and an author. In 2007, she published The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders (which is now available in several languages). For more information about Dr. Barbera or the VB approach, visit barberabehaviorconsulting.com.
Irlen Lenses
Irlen lenses were developed by Helen Irlen for individuals with a sensory perceptual problem known as Irlen syndrome. Irlen’s theory is that people with reading problems and perceptual difficulties are very sensitive to white-light spectrum wavelengths, which overstimulate certain cells in the retina, resulting in incorrect signals being sent to the brain. She found that by placing different-colored overlays on printed pages, light sensitivity and perceptual distortions were reduced. These colors were then applied as a tint on glasses. There is no strong empirical research to support the use of Irlen lenses as an autism-specific therapy; however, colored overlays on printed matter and tinted glasses have been shown to be helpful for a number of schoolchildren. There is anecdotal evidence that some people with ASD have light sensitivity, and many have reported a major difference in their sensory processing when wearing tinted glasses.
RESOURCES
irlen.com
Reading by the Colors by Helen Irlen
Intensive Teaching Approaches
Here are two intensive teaching approaches. Applied Behavior Analysis works on specific skills to improve a person’s level of functioning. In DIR/Floortime, mastering emotional milestones is considered important before working on skills the person needs to learn. Other educational strategies are also useful and some are listed below or in Chapter 7.
Applied Behavior Analysis (ABA)
ABA has been used for many years to successfully teach individuals of varying abilities, and can be used to teach in all skill areas, including academic, self-help skills, speech and language, and socially appropriate behavior. Specific skills are taught by breaking them into small steps, teaching each step one at a time, building on the previous one. Different methods are used to help the child learn, such as prompting (helping the child by guiding him through the desired response), shaping, and rewarding (for correct responses).
B. F. Skinner is the grandfather of ABA, thanks to his study of “operant conditioning” and his book The Behavior of Organisms, published in 1938. ABA is based on the theory that all learned behaviors have an antecedent (what happened before the behavior was exhibited) and a consequence (what happened after the behavior was exhibited) and that all such behavior is shaped by the consequences of our actions, meaning that we are motivated by the consequence to repeat that behavior. For example, most adults work because they are rewarded by a wage or salary. If they stopped receiving that wage, they would stop working.
FOOD FOR THOUGHT
DIR/Floortime
BY DR. JOSHUA FEDER
Developmental individual differences relationship-based intervention (DIR/Floortime) is, like applied behavioral analysis (ABA), an approach to evidenced-based practice that is used for a variety of purposes and, like ABA, has been used extensively for helping people with autism and related challenges learn to relate, communicate, and learn.
ABA focuses on looking at the antecedents and consequences of behavior, working toward compliance, knowledge, and skills. By contrast, DIR/Floortime supports caregivers (parents, teachers, others) to develop trusting relationships with a person with challenges, through which the person can become more able to communicate, relate, and learn. As part of this process, we look at the person’s abilities and challenges to being regulated, such as sensory, motor, and cognitive difficulties, and use that understanding to help the person be more regulated with us, in a widening range of settings, and to interact with us in a flow of interaction. The interaction, as with anyone, is what helps the person learn to be heard, to problem solve, and to learn.
DIR/Floortime works from the person’s desires and ideas to build these abilities, and so there is internal initiation and motivation to learn and integrate new skills and information. Although less widely known, research on autism intervention supports the aims of DIR/Floortime as evidenced-based practice. DIR and ABA can be complementary or used separately. Families should have information on a range of interventions so that they can make informed consent decisions about what might be best for them.
Dr. Joshua Feder is director of research at the Graduate School of the Interdisciplinary Council on Developmental and Learning Disorders, voluntary associate professor at UCSD School of Medicine, and medical director at SymPlay, teaching, advocating, and developing technology to support relationship-based interventions (joshuafedermd.com).
Some of the terms used in ABA include:
Care should be taken when choosing ABA providers. Check with your local autism support group about the ones in your areas. For more information on board-certified providers, go to the Behavior Analyst Certification Board’s website (bacb.com).
RESOURCES
Teaching Developmentally Disabled Children: The ME Book by O. Ivar Lovaas
A Work in Progress: Behavior Management Strategies and a Curriculum for Intensive Behavioral Treatment of Autism by Ron Leaf, John McEachin, and Jaisom D. Harsh
Crafting Connections: Contemporary Applied Behavior Analysis for Enriching the Social Lives of Persons with Autism Spectrum Disorder by Mitchell Taubman, Ron Leaf, and John McEachin
The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders by Mary Barbera
DIR/Floortime
DIR/Floortime was developed by Dr. Stanley I. Greenspan as part of his developmental approach to therapy. Parents and Floortime therapists help children master the emotional milestones needed to develop a foundation for learning. The approach is based on Greenspan’s belief that emotions give meaning to our experiences, as well as a direction to our actions. Floortime seeks to have the child develop a sense of pleasure in interacting and relating to others, and is done through play, based on the child’s interests, and through creating an increasingly larger circle of interaction between the child and an adult. Parents and therapists work on four goals: encouraging attention and intimacy, two-way communication, encouraging the expression and use of ideas and feelings, and logical thought. This method is often used as the play component for children who are in ABA programs.
RESOURCES
The Interdisciplinary Council on Developmental and Learning Disorders: icdl.com
Profectum: profectum.org
stanleygreenspan.com
Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think by Stanley I. Greenspan and Serena Wieder
Visual/Spatial Portals to Thinking, Feeling, and Movement by Serena Wieder, PhD, and Harry Wachs, OD
Speech and Communication
Communication is one of the most basic skills that we have and need. We hope that all children will learn to speak. However, not all children with autism develop speech early on.
Speech therapy can be very helpful and is necessary if you have a child who is behind in his language development. If your child has delays or is not speaking, it is important to get an assessment and begin therapy with a qualified and experienced speech and language pathologist. Check with other parents in your area, or use this listing to find a professional near you: speech-therapy-information-and-resources.com.
FOOD FOR THOUGHT
Facilitated Communication and Supported Typing
BY DARLENE HANSON, MA, CCC
Some children have a hard time developing speech. It’s important to offer alternative ways of communicating, which research shows actually can help speech develop. One method is facilitated communication training (FCT), which is a strategy that provides physical, communicative, and emotional support to the individual as he or she communicates. The strategy is described through what we know about praxis or motor planning, memory, language development, social communication, augmentative communication (use of alternate modes of communication), and natural supports.
Many individuals who require the support described in FCT are able to demonstrate literacy skills such as understanding print, word formation, and written language. Some who use FCT use it to communicate more reliably, and consistently access the use of icon-based communication, such as with line drawings or photos. Others may use FCT or supported typing to communicate using a keyboard. The identification of the need for support does not mean the person is literate. It does mean the person can communicate more efficiently with support.
Those using the strategy of FCT according to the “Standards of Best Practice” do so using the least to most hierarchy of support, for example from the wrist to light touch on elbow to shoulder to no support. Therefore, the least amount of support should be provided for the most communication. It is also recommended that those who use FCT develop and use more independent communication to meet as many of their communicative needs as possible. This can be in the form of limited speech, communication books with line drawings, sign language, or other systems. The individuals are also encouraged to develop a reliable means of communication without the need of support. These are goals, and independence is a process.
The efficacy of the FCT strategy is found in both qualitative and quantitative research (see soe.syr.edu/centers_institutes/institute_communication_inclusion/Research/default.aspx). Many bodies of research attempt to prove the efficacy through “blind tests” and “double-blind” tests. Other researchers have chosen to look at the use of the strategy in more natural and purposeful moments. The strategy itself dates back to the 1970s when Rosemary Crossley began documenting the use of support for individuals with severe communication needs in Australia. In 2000, the Facilitated Communication Institute at Syracuse University published “Standards of Best Practice for Facilitated Communication.”
Providing a person who does not have efficient use of their speech with a way to communicate is important. When using augmentative communication, some people need support to do so. The provision of support using best practices and augmentative communication can open doors to those without efficient communication.
Darlene Hanson, MA, CCC, director of communication services, WAPADH, is a speech and language specialist with an expertise in working with individuals with severe communication impairments, and has been working in this field for almost thirty years. Her work focuses on bringing alternative modes of communication to those who do not use speech to communicate effectively. She is recognized as a Master Trainer in Facilitated Communication, has participated in the writing of the “Standards of Best Practice for Facilitated Communication” from Syracuse University, and has coauthored research on authorship for Facilitated Communication. More about Darlene Hanson at wapadh.org.
Some children develop speech later with the help of speech therapy. However, there are still many children who have difficulty using speech. It’s important to realize that if your child does not have an appropriate way to communicate, he will communicate with his behaviors—many of them inappropriate. It can be very frustrating for a child or teen who has no way of communicating. Even if the goal for your child is to use his voice to communicate, research shows that using alternative and augmentative forms of communication (AAC) helps speech develop.
Some alternative and augmentative forms of communication include sign language and using devices specifically designed for communication purposes. There are many apps that have been developed for tablets and smartphones, such as the iPad and iPhone. AAC devices are much more costly than the iPad, but they may be covered by insurance.
For information on AAC devices, go to asha.org/public/speech/disorders/AAC.
New communication apps are being created all the time, and a speech and language pathologist who is experienced in working with students with severe communication challenges should be able to advise you. For example, there is Proloquo2Go, which enables a child to create sentences with picture icons or words (much like PECS, see page 121) or to type with voice output. There are other apps for those who type that provide voice output such as Assistive Chat. Check with other parents and educators on what is currently available.
Some other alternative methods of alternative communication are listed below.
Supported Typing/Facilitated Communication (FC)
FC is a form of AAC in which people with disabilities and communication impairments express themselves by pointing (e.g., at pictures, letters, or objects) or, more commonly, by typing (e.g., with a keyboard). A communication partner may provide needed supports, including emotional encouragement, communication supports, and a variety of physical supports (e.g., monitoring to make sure the person looks at the keyboard and checks for typographical errors) to slow and stabilize the person’s movement, to inhibit impulsive pointing, or to spur the person to initiate pointing; the facilitator should never move or lead the person.
It often is referred to as facilitated communication training (FCT) because the goal is independent typing, nearly independent typing (e.g., a hand on the shoulder or intermittent touch), or a combination of speaking with typing—some individuals have developed the ability to read text aloud and/or to speak before and as they are typing. Typing to communicate promotes access to social interaction, academics, and participation in inclusive schools and communities. To read the research on FCT, go to soe.syr.edu/centers_institutes/institute_communication_inclusion/Research/default.aspx.
Rapid Prompting Method (RPM)
RPM is a method used for teaching academics by eliciting responses through intensive verbal, auditory, visual, and/or tactile prompts. RPM aims to increase students’ interest, confidence, and self-esteem. Prompting is intended to keep students focused while allowing students to be successful. This is a very low-tech method requiring only paper and pencil to begin with. A lesson might begin with a teacher’s simple statement, followed by a question about what was just said. Next, the teacher writes possible answers and spells the choices aloud. Students learn to select answers by picking up choices and eventually pointing to letters on an alphabet chart or keyboard to spell answers. RPM was developed by Soma Mukhopadhyay (see page 131). For more information, visit Helping Autism Through Learning and Outreach (HALO) at halo-soma.org.
Picture Exchange Communication System (PECS)
PECS is a practical communication system that allows a person to express his needs and desires without being prompted by another person, by using pictures or a series of pictures to form a sentence. The child first learns to communicate by handing someone a picture of the object he wants, then sentence strips, and so on. Not only does this facilitate communication, it motivates the child to interact with others. PECS is easy to incorporate into any existing program, and does not require expensive materials. Behaviorally based instructional techniques are used to implement the program (such as prompting, shaping, fading, and so on). Basic concepts such as numbers, colors, and reading can be taught using PECS, and the picture icons can be used for visual schedules to help the child. Codeveloped by Andy Bondy and Lori Frost, this method helps relieve the frustration of those unable to speak and does not inhibit a child’s ability to acquire and use speech. Many children who began with PECS have gone on to develop verbal language.
For more information, visit Pyramid Educational Consultants at pecs.com.
Social Relationships
Social relationships are important for all people, yet are difficult for many on the autism spectrum to develop naturally. Developing relationships entails having social skills, knowing about expected yet often unstated rules of behavior, and social boundaries. Below are a different ways of teaching what children with ASD need to learn about relationships.
Social Skills Training
Social skills are a difficult area and need to be taught for those with ASD. There are different methods of teaching social skills. Here are some of them:
Social stories. This method promotes desired social behavior by describing (through the written word) social situations and appropriate social responses. Developed by Carol Gray, social stories may be applied to a wide variety of social situations and are created with the learner, who takes an active role in developing the story.
Social stories usually have descriptive sentences about the setting, characters, and their feelings and thoughts, and give direction in regard to the appropriate responses and behaviors. Comic strip conversations are illustrations of conversations that show what people say and do, as well as emphasize what people may be thinking. Social stories and comic strip conversations can be adapted to many functioning levels and situations, and anyone can learn to create them. They are particularly useful for learning how to deal with unstructured time, such as recess and lunchtime.
RESOURCES
Comic Strip Conversations: Colorful Illustrated Interactions with Students with Autism and Related Disorders by Carol Gray
The New Social Story Book by Carol Gray
The Original Social Story Book by Carol Gray
Social skills groups. These teach specific social skills by breaking them down and providing practice in a “safe” environment. Depending on the age or grade level, different social skills are emphasized, including making conversation; taking turns; joining a group; dealing with bullying; friendship; and understanding facial expressions. Social skills training usually takes place in groups of four to six children and is usually beneficial for the more able person with ASD. Social skills development is one of the biggest challenges children with ASD face, and a well-structured social skills group can be beneficial. For more information, see udel.edu/bkirby/asperger/social.html.
Social thinking. “Social thinking” is a term that was coined more than fifteen years ago by Michelle Garcia Winner, a speech pathologist who developed the related approach for her students with high-functioning autism and related challenges in San Jose, California. This approach is different from teaching social skills because it teaches the specific needed thinking strategies that occur before social interaction and communication take place. Social thinking refers to the thinking we do about people, which affects how we behave, and then how people respond to us, which then affects our own emotions.
RESOURCES
Thinking About YOU Thinking About ME by Michelle Garcia Winner
socialthinking.com
Hidden Curriculum
The hidden curriculum refers to the unstated and unofficial behaviors, values, and rules that are “assumed knowledge” that people generally learn by osmosis. These can include expectations about how to act in public (e.g., standing in line, not picking your nose), messages about social hierarchies, and so on. Individuals with autism don’t usually learn these naturally and need to be taught these expected yet assumed rules of behavior.
RESOURCES
The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations by Brenda Smith Myles, Melissa L. Trautman, and Ronda L. Schelvan
OTHER BOOKS ABOUT SOCIAL SKILLS TRAINING
Teaching Children with Autism to Mindread: A Practical Guide for Teachers and Parents by Patricia Howlin and Simon Baron-Cohen
Autism: A Social Skills Approach for Children and Adolescents by Maureen Aarons and Tessa Gittens
Incorporating Social Goals in the Classroom: A Guide for Teachers and Parents of Children with High-Functioning Autism and Asperger Syndrome by Rebecca A. Moyes and Susan J. Moreno
The Autism Social Skills Picture Book by Jed E. Baker
Social Skills Training for Children and Adolescents with Asperger Syndrome and Social-Communications Problems by Jed E. Baker
Do-Watch-Listen-Say: Social and Communication Intervention for Children with Autism by Kathleen Ann Quill
FOOD FOR THOUGHT
Tips from Temple Grandin
Temple Grandin is a woman with autism who has a successful international career designing livestock equipment. Temple has a PhD in animal science from the University of Illinois and is now an associate professor of animal science at Colorado State University. She credits early intervention, starting at age two and a half, for her recovery from autism.
Temple has written several books, including Thinking in Pictures and The Autistic Brain, as well as many informative articles, which can be found on the website of the Center for the Study of Autism (CSA) at autism.org.
Over two phone conversations, Temple shared with me the following important information about what can help people with ASD learn:
THERAPIES, TREATMENTS, AND INTERVENTIONS
As every person has different areas of strengths and challenges, what works for one person may not work for the next. For each person, finding the right balance of strategies is important. Donna Williams, who has many sensory challenges, uses a combination of strategies to offset the difficulties she encounters. She wears Irlen lenses, is on a gluten- and casein-free diet, and is now taking a tiny daily dose of Risperdol (a quarter of a milligram a day), an antipsychotic. Temple takes Norpramin, an antidepressant, and still uses the “squeeze machine” she invented years ago. Temple designed and built this machine as a teenager after observing the calming effect a squeeze chute had on animals at a relative’s farm. This was in response to her need for deep pressure, under her control, that she craved and that helped her cope with anxiety.
EDUCATIONAL STRATEGIES
Temple has accumulated much information and experience over the years about what is effective in helping others learn (see page 236). The most important point she makes is that intensive and early intervention with the right kind of teacher is crucial, more important than the type of program.
MEDICATION
Temple reports that medications have helped her tremendously over the years. In her book Thinking in Pictures, she includes a chapter on the different kinds of medications and how they can be helpful. She has recently reviewed this chapter and found the information still to be valid, although more recent developments, such as the newer atypical antipsychotic medications, are not listed. When treating with medications it is important to look at the benefits of the medication versus the risks—especially with children, whose bodies are still not fully developed—and to start with tiny doses. Temple says that a good rule of thumb in deciding whether or not to continue using the medication is to look at the “wow” factor. If a child is put on a medication and there is an obvious dramatic, positive change in him (e.g., a nonverbal child can now speak), then the benefit may outweigh the risks.
For example, Temple told me that she once attended a conference with Donna Williams and was amazed at how Donna was able to tolerate sitting and having dinner with her and other people in a noisy environment. If Donna lapses from her gluten- and casein-free diet now, the effects are not so severe. This way she can travel and eat in restaurants. She attributed her improvement to the tiny amount of Risperdol she takes daily.
However, it is important to find a doctor who is knowledgeable about autism and medications, and to try medications only under the guidance of such a person. Ask your local autism chapter for names of doctors who are familiar with medications, doses, and the effects on people with ASD, as again, this treatment needs to be individualized for each person.
Other Therapies
Listed here are some adjunct therapies, usually used to target a particular skill area or as part of a wider program, and potentially extremely useful depending on the individual’s needs. Again, it is important that the therapist be knowledgeable and experienced with ASD.
Occupational Therapy
Depending on the age, ability, and need of the individual, occupational therapists provide different services. Their aim is to help the person meet goals in areas of everyday life that are important to them, such as self-care, work, and leisure. Assessments are carried out initially to discover the needs of the individual and provide support to learn skills in those areas. Some therapists are specifically trained in sensory integration. For more information, visit the American Occupational Therapy Association at aota.org.
Music Therapy
Most people respond favorably to music, including people with ASD. Music is motivating and enjoyable. In music therapy, goals are tailored to the needs of each individual and may include increasing nonverbal interaction, such as turn-taking and eye contact; exploring and expressing feelings; and being creative and spontaneous. Some parents have reported that their children began to learn to speak as a result of being taught nursery rhymes and other songs. Research shows that there are some favorable benefits to music therapy. For more information, visit the American Music Therapy Association at musictherapy.org.
Neurologic Music Therapy (NMT)
NMT is a type of music therapy that focuses specifically on music and rhythm’s physical effect on the brain and brain connections (neuropathways). Specific research-based techniques and NMT interventions are applied in a consistent manner based on the therapeutic goal of the client. Neurologic music therapists complete additional training beyond standard music therapy certification in order to maintain their NMT designation. For more information on NMT, go to colostate.edu/dept/cbrm/academymissionstatement.html.
FOOD FOR THOUGHT
Beam Me Up!
It’s a Wednesday morning and I am volunteering at the jog-a-thon at my daughter’s school. As we await the start of this event, other mothers are standing around talking. I approach a few I know and hear a bit of their conversation: “I hear Pasqual got voted off.” “Oh, no, he was my favorite!” “Mine, too.” I move in and ask, “What are you talking about?” They look at me as if I have just landed from another galaxy, and say, “Survivor!” I say, “Oh, you have time to watch that?” and as they look at me, one replies, “We make time, the whole family!”
They continue to talk about Survivor and I drift away. I am left with the usual feeling of being an alien on another planet. Is it because I have a son who is severely handicapped by his autism, leaving me with a lack of time for trivial time-fillers, that I don’t fit in?
It’s hard to feel as if you fit in when you don’t have the same points of reference. The parents huddled around, waiting to pick their children up after school, talk about their daughter’s latest piano recital, her high scores on her SATs, or how their son is representing the school at the county science fair. Somehow, the highlights of my fifteen-year-old son’s week (he sat in his mainstream class and participated appropriately for a one-hour stretch, and hasn’t wet the bed once) don’t seem like the kind of information that I can just slip into the conversation and share as an accomplishment.
What are my time-fillers? Filling out paperwork to explain why I still need respite and other services; preparing for my son’s annual review at school and documenting why he needs occupational therapy and ABA; explaining to the medical insurance company why my son needs a certain treatment; attempting to keep him from “redecorating” the family room; making picture icons; trying to reach the neurologist about seizure medication; reading up on the latest research; making my son clean up the mess he made when he did redecorate; sending letters to politicians; attending voluntary board meetings; taking my son for a swim or a run because he is too hyper; cleaning spots off the rug, the couch, and the walls you really don’t want to know about; and oh yeah—trying to earn a living.
I don’t share the same cultural points of reference as most of the other inhabitants of this suburb. My reference points are those of autism: Talk to me about ABA, OT, MMR, IEP, NAS, GFCF, DTT, ASD; I’m sorry, I don’t know how to talk reality TV.
Assistive Technology
Broadly, assistive technology means any item, piece of equipment, or product system that is used to increase, maintain, or improve the functional capabilities of a person. It can be a high-technology item such as a Lightwriter to help someone type what they cannot say verbally, or an iPad with voice output apps. Or it can be low technology such as picture icons used to communicate something a person wants, or larger letters on keyboard keys. Check with knowledgeable speech therapists and your school’s assistive technology expert to see what items they have found useful, as well as with the latest research and computer specialists to see what is new.
Some children with autism can easily use computer programs or apps and learn by using them. Others struggle with the sensory issues of too much to look at and too much to listen to. Some programs have been designed for students with autism in mind. This area is in constant evolution as advances in technology continue. Although not ASD-specific, here are good places to get information:
RESOURCES
The Alliance for Technology Access (ATA), a network of community-based centers, vendors, and professionals: ataccess.org
TCI teachers, speech therapists, and staff at the Children’s Institute provide feedback and reviews of assistive technology and iPod, iPad, and iPhone apps that are used to support their students: tcischool.org/techtips
A book about apps for the iPhone and iPad: Apps for Autism: An Essential Guide to Over 200 Effective Apps for Improving Communication, Behavior, Social Skills, and More! by Lois Jean Brady
NEVER UNDERESTIMATE THE POWER OF A PARENT
Tito and Soma
Tito Rajarshi Mukhopadhyay is a yound adult from India who is severely autistic and writes eloquently. His mother, Soma, raised him and educated him with little help from anyone else. When he was two and a half, he was diagnosed as autistic and she was told to keep him busy. Soma did just that. She read to him from textbooks on subjects ranging from science to literature when she wasn’t engaged in teaching him other skills. Any physical activity, such as riding a bicycle, she had to teach him by physically motoring his body through the motions. She taught him to write by attaching a pencil to his fingers with a rubber band as he was unable to hold it on his own. She taught him to point to numbers and letters, also by physically prompting him through the tasks. By age six, he was able to write independently.
In December 1999, Soma took Tito to England, to Elliot House (the Centre for Social and Communication Disorders run by the National Autistic Society), where he was observed and assessed by Drs. Lorna Wing, Beate Hermelin, and Judith Gould, among others. Tito at the time was eleven, yet reached the level of a nineteen-year-old on the British Picture Vocabulary Scale administered by Dr. Gould. His story, from India to the UK and back home again, is the subject of a BBC program, Inside Story: Tito’s Story. The National Autistic Society subsequently published a book written by Tito titled Beyond the Silence: My Life, the World, and Autism. The revised U.S. edition of Tito’s book, The Mind Tree, provides valuable insight into the life and mind of persons with little to no expressive language.
In autumn 2001, the Cure Autism Now Foundation (CAN) invited Soma and Tito to move to Los Angeles so that Soma could try her teaching techniques on U.S. students with autism. In addition, Tito graciously consented to undergo extensive testing by experts, such as Dr. Michael Merzenich, a neuroscientist at the University of California at San Francisco Medical School. Merzenich’s tests helped validate and clarify Tito’s written experiences, while shedding light on the brain function of people with severe autism. For example, in perception testing where lights are flashed on a computer screen at the same time as the sound of beeps is issued, most people can sense the beep and the light at the same time. However, Tito cannot see the light on a computer screen unless it appears a full three seconds after the beeps. He explains that he can use only one sense at a time, and has chosen to use his ears. This is in marked contrast to the experience of Temple Grandin, a professor at Colorado State University who holds a doctorate in animal science and has autism. Dr. Grandin explains that she thinks totally in pictures, that thinking in language and words is incomprehensible to her, and that she has difficulty with her ultrasensitive hearing because she cannot tune out unwanted noise the way most of us can.
Soma worked for two years with a class of severely autistic children using the method she developed with Tito, which she calls the Rapid Prompting Method (RPM). Soma teaches academics by simultaneously stimulating auditory, visual, and kinesthetic channels. She elicits responses from children at a rapid pace, which keeps students focused on the lesson at hand.
Soma is now educational director of the nonprofit organization Helping Autism Through Learning and Outreach (HALO), based in Austin, Texas. HALO provides individual instruction for students and training for parents and professionals interested in RPM. Soma has adapted her method to different learning styles.
Neuroscientists such as Dr. Merzenich are hopeful that this teaching method will help many.