Therapeutic Choices for PDDs: Part 1

• Applied behavior analysis (Lovaas method)
  
• Animal-assisted therapy
  
• Auditory integration training
  
• Augmentative and alternative communication
  
• Behavior modification programs
  
• Dance, music, or art therapy
  
• Floor-time play therapy (Greenspan method)
  
• The HANDLE institute approach
  
• Linwood method

For most people with PDDs, no single approach is best. Parents, professionals, and adult patients can combine approaches, taking what's best and most applicable to the individual from each. There's no need to be a slave to one method.

However, proponents of some methods may be very attached to their favorites, and may downplay the merits of competing ideas. This can make it hard for you to judge various programs objectively. One thing is certain: if someone tells you "this is the only way to help people with autistic spectrum disorders," that person is probably more interested in the program itself than in the person who might benefit from it.

Just as you should beware of zealotry on behalf of one approach, watch out for "one size fits all" programs. Therapeutic programs, whether they involve speech therapy, counseling, or ABA, must be individualized. Even when a program brings together groups of children or adults, such as a social-skills club, each person in the group should have his or her own goals, and each may require different teaching methods.

Applied Behavior Analysis (ABA, the Lovaas method)

Very briefly described, ABA consists of five steps:

1. Observe the behavior that you want to change, replace, or initiate. Take a baseline measurement of where the child is right now. Behavior is charted, as are its antecedents (for example, what let up to the behavior, where it occurred, and when it occurred).

2. If it is a behavior that you want to change or replace, make a hypothesis about what the behavior might be intended to communicate, then design an intervention based on that hypothesis. Your goal must be a positive goal, not a negative one (i.e., "Jimmy will make eye contact when requested," not "Jimmy will stop avoiding eye contact.") Break this goal down into small steps, and design a separate, progressive drill to address each one in turn.

3. If it is a behavior you want to initiate, make a goal and break it down into its smallest components. Each component should be addressed in a separate, progressive drill. Dr. Lovaas recommends starting with speech skills for the first few months, and following with drills for social-interaction skills.

4. Apply the intervention, using positive reinforcement for each instance of desired behavior. Since drills are short and repetitive, the rewards must be small and frequent. Small pieces of food, hugs, play activities, and verbal praise have all been employed as reinforcers. The reinforcer must be something the child really wants. Some practitioners use negative reinforcers (aversives) when undesired behaviors occur. Whether you choose to do so is a matter of philosophy and, perhaps, what works best with your specific child. Although Dr. Lovaas' early experiments included the use of mild electric shock and other physical aversives, these are no longer employed in his program.

5. Assess the effectiveness of the intervention, and adjust it if necessary.

In 1987, Dr. Lovaas' team reported good outcomes in 47 percent of the children who completed his program, based on a well-designed study. Since then, hundreds of ABA practitioners have been trained, and thousands of parents have applied Lovaas' methods themselves. ABA techniques have been carefully honed by practitioners, many of whom now report that better than half of the children they work with experience good results.

What constitutes "good results?" For Lovaas, it was approaching normal functioning, including being capable of self-care and mainstream education. For some parents, ABA has been a truly incredible experience. Catherine Maurice, mother of two children diagnosed as autistic, details the miracles wrought by a well-designed, firmly implemented home ABA program in her book, Let Me Hear Your Voice (Fawcett Books, 1994). Both of her children are now mainstreamed and, she says, no longer meet the criteria for Autistic Disorder. Most parents who implement ABA programs do not have the dramatic results reported by Maurice and some other parents. However, it's safe to say that ABA does work, and work well, for a very significant number of children.

ABA is the most effective of the therapies we have tried. I believe that ABA is also the stepping stone to being able to accept and benefit from other therapies. --Holly, mother of three-year-old Max (diagnosed PDD-NOS, apraxia of speech)

Lovaas and other ABA experts recommend a very intensive program when working with children who have a diagnosis of Autistic Disorder. Forty hours per week of one-on-one, structured intervention is the standard. Lovaas' own research (which has been replicated by others) has shown that neither ten hours per week nor twenty hours per week is "enough." Please note, however, that his clinical research was done primarily with moderately to severely autistic children. For children with PDD-NOS or Atypical PDD, who may already have some of the basic skills that ABA practitioners work many months to initiate with more severely affected children, mixing a smaller amount of ABA work with other interventions may be sufficient. This has been the case for some families who have tried a modified ABA approach, but it has not been clinically tested. Many families whose children have a PDD-NOS, Atypical PDD, or similar diagnosis choose to follow Lovaas' recommendations to the letter, providing thirty to forty hours per week of ABA work.

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The details of ABA are considerably more complex than the brief description here. Be sure to consult other resources before you devise or implement a program.

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Catherine Maurice recently edited an ABA manual that gets rave reviews from many families, Behavioral Intervention for Young Children with Autism (Pro-Ed, 1996). Dr. Lovaas' Teaching Developmentally Disabled Children: The ME Book (Pro-Ed, 1981) is also considered a classic for teaching ABA concepts, although parts are somewhat outdated. He is said to be working on a new version as this book goes to press (Spring, 1999). Videotapes are available from Pro-Ed that show the techniques described in The ME Book in action.

There is an Internet mailing list for parents and professionals using ABA techniques, the Me List. On the Web, Damian Porcari's excellent Recovery Zone site can lead you to additional resources, including information about insurance coverage for ABA programs, a list of credentialed practitioners, and specific instructions for setting up a home ABA program. The Lovaas Institute for Early Intervention also has many links to practitioners, including ABA-friendly programs in Spain, Iceland, Norway, and the U.K. There are now several "Lovaas replication sites" in the U.S., programs whose practitioners and methods duplicate those used in the original UCLA program.

I have a home program based on discrete trials geared around speech. Behavior modification works great with Elaine, as it does with all people--we all work for rewards. --Sarah, mother of three-year-old Elaine (diagnosed PDD-NOS, possible oral-motor apraxia of speech)

Family participation is very important to an ABA program, although these techniques can be applied in school or residential settings as well. Most families using ABA techniques run a home-based program relying on themselves, other family members, community volunteers, students, and sometimes paid practitioners. Training in ABA techniques is often available at state or regional autism conferences, or through firms that specialize in training parents and providing trained paraprofessionals for home ABA programs.

Dr. Lovaas has noted that follow-up is also very important when using ABA programs. When children have made sufficient gains in social skills to be in school or pre-school, he strongly encourages full inclusion in a mainstream classroom, supplemented by continuing instruction in social skills for use in group situations.

Some school districts and Early Intervention programs do support and fund ABA programs. Because ABA has been clinically proven to work, parents in the U.S. and Canada have gone to court to force school districts to pay for and implement ABA programs. Many have succeeded.

ABA drawbacks

Others (including some adults with high-functioning autism) decry ABA as being much like animal training, encouraging children to develop robot-like behavior in exchange for bits of food. Parents who have actually implemented ABA programs reply quite strongly that nothing could be further from the truth. The goal of ABA is not Pavlovian response, but the emergence of skills that build the individual's ability to respond naturally, expressing their own needs and ideas.

You may also hear that ABA is only for pre-school children or for those with severe autistic behaviors. This is certainly not the case.

Some parents do not turn out to be good ABA practitioners. It takes a lot of stamina and dedication. If a parent is struggling with depression or physical illness, it can be especially difficult. Sharing the duties with your partner, other family members, volunteers, or paid helpers can lighten the load. Parents doing ABA certainly need to take special care of their own physical and mental health, and will need to arrange for at least some time off--time for an occasional dinner out, an evening class, or a quiet walk in the park.

Finally, the time commitment required to implement thirty to forty hours of ABA is considerable. Lovaas requires families entering his program to commit one parent to working nearly full-time with their child--something that's not always easy in this age of single-parent and two-earner families. Many parents have made considerable sacrifices, both personal and professional, to make ABA work. Not every family has the ability to make that choice. And if you are paying for ABA specialists to work with your child daily, the cost can be very high.

Similar programs

Martin A. Kozloff developed a program that also used behavior modification techniques, but in a less-stringent manner than Lovaas' ABA program. Kozloff's approach also includes motivators for parents to encourage them to complete training sessions, and intensive counseling work with families. As described in his books Reaching the Autistic Child: A Parent Training Program (Research Press, 1973) and A Program for Families of Children with Learning and Behavior Problems (John Wiley and Sons, 1979) Kozloff's program might be well-suited for families experiencing significant internal stress, or whose parenting skills need work. If implemented as written, it should provide a particularly supportive structure to help parents help their children, although some aspects might be seen as coercive or blaming. We are not aware of any programs currently using the Kozloff approach.

Pivotal Response Training (PRT), also shares some characteristics with ABA.

Dr. Stanley Greenspan's "floor-time play therapy" program, described below, also relies on one-to-one interactions that build basic communication and social skills. Like ABA, it has been clinically successful with many autistic-spectrum children.

Some families may prefer the less-regimented approach of PRT or floor-time, or may want to mix and match.

Animal-Assisted Therapy

Most people are aware of the therapeutic potential of pet ownership. A strong bond with a cat, dog, or other animal can help a person develop as a compassionate human being. Because animals communicate without words, non-verbal children and those with auditory sensitivities sometimes prefer their company to that of noisy, jabbering humans. Some animals are also natural experts at therapeutic touch, cuddling or nuzzling just when it's most needed. The simple act of stroking a pet can calm a racing heartbeat or a troubled mind.

This knowledge is applied by professionals working in the field of animal-assisted therapy. Programs include therapeutic horseback riding (hippotherapy); bringing animals to visit children in schools, homes, or residential centers; and even "dolphin therapy," whose proponents claim that interacting with these intelligent marine mammals offers benefits for people with PDDs.

Parents and adults with PDDs should be careful of animal-assisted therapy programs that charge a lot of money or make extravagant claims. Pets, including school pets as well as animals kept at home, are a great idea for those individuals who are not likely to injure an animal. Not all people with PDDs like animals, and certain animals (such as high-strung breeds and those likely to bite) are unsuited for the job.

People with PDDs who experience seizures may be able to gain yet another benefit from canine company. Some dogs can be trained to recognize seizures, and provide assistance to people who live alone. The Epilepsy International Web site has more information about seizure dogs, as do most local epilepsy support associations.

Auditory Integration Training (AIT)

Based on principles first developed by French hearing specialist Guy Bérard, AIT involves listening to particular sounds through earphones to retrain the hearing mechanism. The process takes quite awhile, and is somewhat time-consuming. A second AIT-style therapy is called the Tomatis Method.

AIT is the topic of one interesting book, The Sound of a Miracle by Annabel Stehli. Stehli tells the story of her autistic daughter Georgie's success with Dr. Bérard's auditory training methods. To date, Georgie's story is probably the most dramatic recovery with AIT alone. It has been a contributing factor to improved function in many autistic-spectrum individuals, however.

Quite a few audiologists and other professionals currently offer AIT. For more information, contact the Society for Auditory Integration Training; the Autism Research Institute, which has sponsored several studies of the method and can provide a lit of all known AIT practitioners; or see the Autism Society of America's Web page on the topic, which includes a number of informative articles and a smaller list of practitioners maintained by the Georgianna Foundation.

In an interesting twist, it may soon be possible to do a general (but perhaps still effective) AIT program at home. A CD series called EASe, for Electronic Auditory Stimulation effect, has been developed by Vision Audio Inc. You can listen to the EASe CDs using good-quality home equipment, following a prescribed course. No research results on this product are yet available, but it could provide some help for those without access to a full-fledged AIT program. The EASe CDs have been purchased by a number of autism support groups, so you may be able to borrow them from one in your area.

Similar software products are already available for retraining the brain's auditory processing mechanism. These do not reduce sound sensitivity, but help the individual to differentiate the sounds of speech from one another. Perhaps the best-known product is FastForward, developed by Scientific Learning Corp. FastForward is based on the research of Dr. Paula Tallal and Dr. Mike Merzenich (Dr. Merzenich was also a co-developer of the cochlear implant for deafness), and was rigorously tested at Rutgers University for use in speech and auditory processing disorders. It uses video-game techniques to bring users through a series of exercises said to increase temporal processing (acoustics) and language processing.

During clinical trials, FastForward was administrated to a group of children with Pervasive Developmental Disorders, most of whom were diagnosed as autistic. Compared to children with Attention Deficit Disorder (ADD) and Central Auditory Processing Disorder (CAPD) alone, the children with PDDs made the most impressive gains. The PDD group started out more impaired than the other two groups, but more than doubled its auditory performance in an eight-week trial. However, the auditory and language skills of the ADD and CAPD groups moved into the low end of the "normal" range after treatment, while those of the PDD group were still classified as impaired. This difference may be due to disparities within the PDD group, however--since autistic spectrum disorders have multiple causes, some children may have excellent progress with FastForward or similar programs, while others will experience no gains at all.

The FastForward software is available to clinicians only, and these purchasers must be trained to use it properly before they can obtain it. A list of licensed clinicians (mostly speech therapists and audiologists) is available from SLC. The program is time-consuming, and many clinicians charge $1,000 or more to administer it over a period of weeks. Some school districts have also purchased the software.

If you are interested in using FastForward, you might want to purchase a tape of a speech by SLPs Karen Supel and Christina Rogers called "Using FastForward with Children with PDD." It is available from the Autism Society of America, which sponsored Supel and Rogers' presentation at its 1998 conference.

A less advanced program called Earobics from Cognitive Concepts Inc. can be purchased for home use, and is much less expensive. You might try Earobics first, and move on up to FastForward if this approach seems to be beneficial.

Augmentative and alternative communication

If you've ever seen British physicist Stephen Hawkings "talk" with the assistance of his computer, you know what the very finest augmentative communication devices can do. There are a wide variety of products available--and in some cases, the cost (which can be considerable) can be covered by private insurance, government medical plans, or your school district.

Tons of information about these devices, including a list of companies that make them, is available online. Some products cost less than $100 U.S., and produce a limited vocabulary of words. You may even be able to find a computer-like "toy" at a local toy store that can do rough sound synthesis of a few letters together or of simple words. Other devices are programmable: parents or clinicians can choose or record the desired words ("potty," "go," "drink," etc.) and map them to an appropriate picture on a keyboard or a screen. At the high end, AAC devices can help a brilliant scientist like Hawkings deliver a complete and erudite lecture.

Augmentative communication actually predates the computer age, however. Before machines could synthesize sound, non-verbal people were able to use drawings to let others know their thoughts and needs. Schools often use the PECS (Picture Exchange Communication System) to help young children with severe speech disorders communicate. Developed by Lori Frost and Andrew Bondy, PECS uses specially designed pictures to symbolize words and concepts.

PECS and similar commercial products are available for use at home, school, and work. Parents and professionals working with young children can also create their own customized picture books. These are a great way to stimulate "conversation" with a non-verbal child by offering acceptable choices in the form of pictures.

Health concerns aside, many parents swear by the picture menus available at fast-food restaurants like McDonald's. Children tend to be enthusiastic about getting a desired food or drink by pointing to a picture. You can extend this practice by creating "menus" of your own, using PECS or similar drawings, pictures cut from magazines, or photographs. You might create a menu of food choices at home, clothes to wear to school, or activity choices.

Home-made picture books can also be used to schedule activities. By putting pictures in order, perhaps with a ring binder, children can truly visualize the day's plans.

Always include the written and spoken word when using picture-based AAC systems. Some children will never be verbally proficient, but seeing and hearing words with pictures of the items or activities they represent helps them make essential associations needed to develop their communication skills as well as possible. For children who do make some attempts at speech, gradually insist that they approximate the word's sound rather than just pointing at the picture.

You may have heard of Facilitated Communication (FC), a form of AAC in which a trained aide helps a non-verbal person type by supporting their hand. Unfortunately, scientific studies have shown that the words and ideas generated almost always arise with the aide, not the person being assisted. Reputable researchers have gone so far as to call FC a fraud, and to accuse its boosters of giving families false hope.

However, there are a very few instances in which a previously non-verbal person has learned to type independently after starting with FC-style supported typing. We urge extreme caution with this approach, unless a medical exam by a physician, physical therapist, or occupational therapist has verified that the person in question has an orthopedic handicap. Even then, it would be wiser to seek the help of an occupational therapist or an AAC professional. Occupational therapy can help build the muscles needed for typing, and some OTs and physical therapists can recommend splints that could be helpful. A wide variety of systems for typing are available that work well for people with limited hand strength or poor muscle control.

Behavior modification programs other than ABA

These programs can be highly effective, but there was a notable lack of success with the autistic population until the advent of specially targeted ABA techniques. Part of the problem was poor understanding about autism and related disorders. In many cases, people with PDDs who were institutionalized or placed in residential schools were punished for such "willful" acts as not speaking, making repetitive motions, or having self-abusive behavior. Because those in charge of these behavior modification programs did not know the characteristics of PDDs and did not look at behavior as a form of communication, these patients frequently regressed rather than ending their behaviors.

If a school or residential center that you are considering employs behavior modification, make sure the staff has a thorough understanding of autistic spectrum disorders and ABA-style techniques. Even the simplest behavior modification ideas, such as "token economies" or other reward systems, will need to be individualized to meet the needs of people with PDDs.

One area where behavior modification techniques can be helpful is in designing a plan for home discipline. Parents who are frustrated with behaviors can apply these techniques, even with older children or adults in home-care. Training or a behavior consultant may be available through social service agencies.

Doug is getting what's called wrap-around services. This is where a Therapeutic Support Staff person comes to the house, and we target certain behaviors to try and get Doug to stop doing them. The behavior is whatever Doug seems to be doing for a certain time, such as throwing things when he's upset, or things like getting him to sit at the table and eat his meals. --Debbie, mother of eleven-year-old Doug (diagnosed PDD with Fragile X Syndrome and Sensory Integration Disorder)

As with ABA, behavior mod programs for people with PDDs usually work best when incentives, not aversives, are employed.

Dance, music, or art therapy

Each also builds important skills. Dance, for example, teaches a sense of rhythm, relies on counting and imitative skills, and can help people develop their sense of balance. Music has mathematical underpinnings, and art can be an alternative form of communication even as it builds fine-motor skills and imagination.

Well-trained dance, music, and art therapists are aware of what they're teaching along with the activity, but integration into mainstream or adapted classes in these subjects can also be enriching.

Some autistic-spectrum people have "splinter skills" in one of these areas, and are able to develop their talents for personal enrichment or as a career.

Floor-time play therapy ("the Greenspan method")

"Floor-time" interactions are less like ABA drills and more like play, even when they carry the same content and intention. The parent or other therapist tries to engage the child's attention, and rewards the engagement when it occurs. Floor-time is a one-on-one experience that involves getting right down to the child's level to encourage interaction--by any playful means necessary. If a child tends to line up miniature toy cars in endless lines, for example, Dad might try to find out what happens when car No. 3 in the line drives away noisily. If a child babbles the same sound over and over, Mom might try joining in with a silly look on her face, then varying the tune and the movements. If one strategy doesn't work, you try another. As interaction increases and the child begins to initiate activity, the parent follows the child's lead, always trying to keep attention focused on interaction and communication.

Greenspan suggests that floor-time principles be made the basis for Early Intervention and school programs for children with PDDs, and that they be used by other types of therapists who need to engage the child for their purposes. He recommends that parents or their assistants complete between six and ten, twenty- to thirty-minute floor-time sessions every day.

One-on-one teaching has worked very well. I have been using Greenspan's "floor-time" model at home with him with great success. He is even beginning to use some imaginative play. Any method that is visual rather than auditory also works well. --Jennifer, mother of three-year-old Joseph (diagnosis still in progress, suspected Atypical PDD)

Greenspan reports in his most recent book, The Child With Special Needs (Addison-Wesley, 1998) that 58 percent of the children with PDD-NOS or autism who participated in his program for two or more years showed "good to outstanding" outcomes, as measured by no longer scoring in the autistic range on the Childhood Autism Rating Scale (CARS) and also as based on observation. About 24 percent made a "medium" level of progress, described as having lost many "autistic" behaviors (perseveration, self-absorption, self-stimulation) but having continued difficulty with symbolic communication. Only 17 percent continued to have fairly serious problems, despite whatever small gains they may have made in the program. These judgments were based on file review of 200 cases, formal testing, and video-taped observations over a period of years.

Greenspan reported that the most successful children were those who fell on the low end of the CARS scale before intervention, i.e., those more likely to be labeled PDD-NOS or Atypical PDD rather than Autistic Disorder. This indicates that the floor-time approach may be especially useful for these children, some of whose higher-level abilities and needs don't seem to fit with the ABA approach.

Somewhat controversially, Greenspan also reported that while a comparison group of children in ABA-style programs for over thirty hours per week made significant gains over those receiving "traditional" (school-based Early Intervention and perhaps medication) interventions, most continued to have significant difficulty with higher-level, spontaneous thought and action. However, Greenspan has since noted publicly that the ABA approach can work very well with some children (including those with the most severe autistic characteristics), and that parents and practitioners should judge each model according to its merits for the individual patient.

Greenspan's program is not much like the psychoanalytic model of play therapy, but like ABA, it does have some cousins.

Filial therapy, in which parents take turns initiating structured interactions with their child, is certainly similar.

Some institutions and day-treatment centers are based on the concept of milieu therapy, where all interactions between staff and patient, patient and patient, or patient and parent are seen as potentially therapeutic.

These approaches are less structured than the floor-time model, and could be incorporated with it, particularly for older children.

The Options Institute's method also has similarities, although it is considerably more intensive.

The HANDLE Institute approach

HANDLE conducts a rather comprehensive two-part diagnostic interview, including structured observation, after which a series of simple exercises is recommended. These provide what Bluestone calls "gentle enhancement" to retrain and rebuild the nervous system. Videotapes are made at the initial visit and at any follow-up visits to help parents or adult patients assess progress.

The exercises themselves appear to be based on sound principles. Some are similar to exercises used in sensory integration or other occupational therapy programs.

Some parents have reported that they found HANDLE's promotional materials too boosterish for their taste, but others who did try the program praised the individualized approach. These parents said the exercises were easy to fit into their family life and, most importantly, helpful.

There have not been scientific studies of the HANDLE method to date. There is a great deal of anecdotal evidence that the HANDLE Institute's methods can help at least some people with PDDs improve their ability to function. There are other centers and clinics that advertise similar services, but HANDLE has one major advantage: its services are primarily in the area of evaluation and program design. The exercises themselves are performed at home. As a result, it is considerably less expensive than some other therapeutic resources.

As of this writing, HANDLE-trained providers are practicing in Seattle; Austin, Texas; and a few other U.S. cities.

The Linwood method

Simons describes her program in The Hidden Child: The Linwood Method for Reaching the Autistic Child (Simons, Woodbine House, 1987). The title--and the time period in which Simons' work was done--might lead you to believe that her approach was psychoanalytical, but it actually had more in common with the sensory integration, behavior-modification, and floor-time approaches used today. Children's behavior was observed, and the caretakers worked hard to find and address the motivations for disturbing or dangerous behaviors. Sometimes they found a psychological cause, as in the case of one boy who developed a fixation on people's birthdays when his parents had changed his own "official" birth date due to his small size, to avoid comment from nosy neighbors. More often, the problem was sensory or developmental in nature, and staff members worked out surprisingly thoughtful programs to address these deficits.

Although Simons' book was written to address the needs of residential centers and schools, her careful observations and suggestions can be useful to parents as well. Her chapter on language has some particularly excellent ideas, especially for devising conversation-skills training programs for older children.