Evaluating Treatments for Children with Autism

1. Evaluating Treatments for Children with Autism Ed553 Applied Behavior Analysis Programs Caldwell College

2. Science and Assessing Effective Treatment • Science provides certain criteria to decide what information is, and is not, valid (accurate) • Certain characteristics can be seen in “treatments” that are likely NOT scientifically validated • In this presentation, we will use the terms TREATMENT, THERAPY, and INTERVENTION interchangeably

3. How do I Evaluate Treatment Claims?Psuedoscientific Therapies: Some Warning Signs*originally printed in Science in Autism Treatment, Spring 1999. • High "success" claimed without valid supporting evidence • Rapid effects promised • Therapy said to be effective for many symptoms or disorders without evidence that you can generalize these effects • “Theory” behind the therapy contradicts objective knowledge (and, sometimes, common sense) • Therapy said to be easy to administer, requiring little training or expertise

4. How do I Evaluate Treatment Claims? • Other currently validated treatments are said to be unnecessary, inferior, or harmful. • Promoters of the therapy work outside their area of expertise. • Only testimonials, anecdotes, or personal accounts are offered in support of claims about the therapy's effectiveness. Little or no objective evidence is provided. • Catchy, emotionally appealing slogans are used in marketing the therapy. • Belief and faith are said to be necessary for the therapy to "work."

5. How do I Evaluate Treatment Claims? • Skepticism and critical evaluation are said to make the therapy's effects evaporate. • Promoters resist objective evaluation and scrutiny of the therapy by others. • Negative findings from scientific studies are ignored or dismissed. • Critics and scientific investigators are often met with hostility, and are accused of persecuting the promoters, being "close-minded," or having some ulterior motive for "debunking" the therapy.

6. More…How do I Evaluate Treatment Claims? • Source: American Academy of Pediatrics Committee on Children with Disabilities • Treatment is based on overly simplified scientific theories (e. g., “certain sounds can re-organize the brain”) • Treatment fails to identify specific treatment objectives or target behaviors • Treatments are stated to have no adverse effects without supporting evidence; thus, proponents deny the need to conduct controlled studies • (This contradicts ALL ethical codes, which require “First, do no harm!”)

7. Sensory Integration Therapy • Sensory Integration (SI) therapy is a sensory-motor treatment developed by Dr. A. Jean Ayres. • Proponents theorize that sensory integration is an innate neurobiological process (Hatch-Rasmussen, 1995), and that children with autism and other developmental delays experience dysfunction in which sensory input is not “integrated” or organized appropriately by the brain.

8. Evaluating Sensory Integration Therapy • Current research does not support SI as an effective treatment for children with autism, developmental delays or mental retardation • SI has not been shown to be responsible for positive change in a child's behaviors or skills. • In at least one study, SI was shown to actually increase self-injurious behaviors. • Association for Science in Autism Treatment

9. Evaluating Sensory Integration Therapy • "Though Sensory Integration Therapy does not appear to enhance language, control disruptive behaviors, or otherwise reduce autistic behaviors, it may offer enjoyable, healthy physical activity (Smith, 1996).” • “Professionals considering SI interventions should portray the intervention as experimental, and disclose this status to key decision makers influencing the child's intervention.” • Association for Science in Autism Treatment

10. Auditory Integration Training • Developed in 1960s by French physician Guy Berard • AIT is based onunproven theory that symptoms in autism are caused by auditoryperception defects that distort sound or produce auditoryhypersensitivity (hyperacusis). • Treatment consists of identification of sounddistortion or hypersensitivity followed by twice daily sessionsfor 2 weeks in which computer modified music determined to beoptimum for the patient is played through a device called theAudiokinetron.

11. Concerns • Audiokinetron may potentially be unsafe, delivering levelsof sound to the eardrum that may be harmful to hearing. • AIT devices do not have FDA approval for treating autism or any other medical problem. • The FDA has banned the importation of the Electric Ear and any other AIT device made by Tomatis International, of Paris, France.

12. Evaluating Auditory Integration Therapy • No well-designed scientific studies demonstrate that AIT is useful (in any form including Tomatis®); therefore AIT is not recommended for children with autism. • The American Academy of Pediatrics • The American Academy of Audiology

13. Evaluating Auditory Integration Therapy • AIT is not yet objectively substantiated as effective subject to the rigors of good science. • Professionals considering AIT should portray the method as experimental, and should disclose this status to key decision makers influencing the child's intervention. • Association for Science in Autism Treatment

14. Evaluating Auditory Integration Therapy • A randomized controlled trial with an adequate sample size found no differences in children receiving auditory integration training as compared with those listening to the same music which had not been modified. • A recent controlled study found no benefit of AIT and poorer scores onsocial and adaptive and expressive language scores after AIT. • “Because of the lack of demonstrated efficacy and the expense of the intervention, it is recommended that auditory integration training not be used as an intervention for young children with autism.” • New York State Department of Health Early Intervention Guidelines

15. Claims of Evidence for AIT • Two studies are offered by AIT proponents which do not meet the rigors of scientifically valid research: • Gilmor, T. M. (1999). The Efficacy of the Tomatis method for Children with Learning and Communication Disorders, International Journal of Listening, 13, 12. • This journal does not fit the definition of “peer reviewed” (review by published scientists) • Conclusions in the paper are based on the technique of meta-analysis of past studies (conclusions drawn from selected pieces of many studies) not empirically validated research. • Credibility of Journal’s mother organization (International Listening Association) is questionable. Web page contains quotes from Artists, Writers, and Rock Stars • "Listen, learn, read” from Deep Purple

16. Claims of Evidence for AIT • Second study offered by AIT proponents: • Neysmith-Roy,  J.  M. (2001). The Tomatis Method with severely autistic boys: Individual case studies of behavioral changes, South African Journal of Psychology, 31. • Case study does not qualify as empirically validated research. It is a description of somebody’s characteristics but has no controlled assessment of treatment variables.

17. Traditional Speech & Language Therapies • Non-behavioral speech and language therapists have developed many different treatments (e.g., PROMPT) most of which are aimed at stimulating children’s natural interest and ability in learning language. • The treatments usually take place in one-to-one sessions held from ½ to 3 hrs per week.

18. Evidence of Traditional Speech & Language Therapies • No scientific studies have evaluated whether any form of speech and language therapy, other than behavior analysis, helps children with autism. • There have been no studies to evaluate the effectiveness of PROMPT therapy with children with autism • Dr. Rogers at the MIND Institute is currently heading up a project comparing PROMPT with other models of language • No outcome data have been produced, as of yet.

19. Evaluating Traditional Speech & Language Therapies • By itself, speech and language therapy is probably not intensive enough to be very effective. • However, it may augment other interventions by identifying areas that need remediation or offering strategies for promoting the use of language skills in everyday settings.

20. Speech & Language Therapies Using ABA • A variety of behavioral techniques has been shown to be effective for increasing and improving language and communication in children with autism (e.g., activity schedules, audio modeling, video modeling, PECS) • When teaching children with autism, speech and language therapy has been shown to be maximally effective when delivered using the principles of ABA

21. What is an “Integrated” Treatment Model”? • (Sometimes referred to as combination model, comprehensive model, eclectic model, whole person model) • Using an “integrated” model assumes there are multiple effective therapies that, when combined, work even better than the single effective therapies. • Using an “integrated model” also assumes that proponents are using only the therapies that have been shown to work while ignoring the ones that have not. • But to find out which ones work, you MUST look for controlled studies that demonstrate effectiveness (use objective data, not testimony). • If this has not been done, then proponents may be taking away time from therapies that have been shown to be effective by advocating for an integrated model • There is currently NO evidence that combinations of therapies for autism are better than the sum of their parts.

22. Evaluation of Integrated Therapies • Eikeseth, Smith, Jahr, & Eldevik (2002) • Compared applied behavior analysis (ABA) with an integrated treatment • ABA treatment consisted of language, social, academic, fine/gross motor, and self-help skills • Integrated treatment consisted of: sensory integration therapy, speech therapy, and ABA • At a 1-year evaluation, 13 children who had received ABA treatment made significantly larger improvements than a comparison group of 12 children who had receive intensive, integrated therapy. • On average the ABA group gained 17 points in IQ, 13 points in language comprehension, 23 points in expressive language, and 11 points in adaptive behavior.

23. Greenspan (DIR; Floortime) • Stanley Greenspan, MD and colleagues have published papers on theories of child development. • Only one relates specifically to children with autism; others may include references to autism among an array of disabilities. • Greenspan and others have created a “developmental approach” for early intervention with children with disabilities (Developmental Individual-Difference, Relationship-Based Model) commonly referred to as the "Floor Time" approach (Greenspan, 1998).

24. Greenspan (DIR; Floortime) • DIR/Floor Time includes interactive experiences, which are child-directed, in a low stimulus environment, ranging from two to five hours a day. • During a preschool program, DIR/Floor Time includes integration with typically-developing peers. • Greenspan contends that interactive play, in which the adult follows the child's lead, will encourage the child to "want" to relate to the outside world. (Greenspan, 1998).

25. Evaluating Greenspan therapy • “There have been no peer-reviewed, published studies of Greenspan's DIR/Floor Time's effectiveness for children with autism. Professionals considering Greenspan's Floor Time should portray the method as without peer-reviewed scientific evaluation, and should disclose this status to key decision makers influencing the child's intervention.” Association for Science in Autism Treatment

26. Evaluating Greenspan therapy • “There are no adequate controlled trials that have evaluated the efficacy of intervention approaches based on the DIR model for treating young children with autism” • “Approaches based on the DIR model can be time intensive for both professionals and parents and may take time away from other therapies that have been demonstrated to be effective” • New York State Department of Health Early Intervention Guidelines

27. Miller Method • The Miller Method™ uses adaptive equipment, including platforms (that elevate the child in hopes of increasing eye contact), large swinging balls (to expand the child's reality system), and Swiss cheese boards (to teach motor planning, as well as to increase the child's understanding of his or her relation to environment and space.) (Miller, 1998).

28. Evaluation of Miller Method • The Miller Method™ may have promise, but it is not yet objectively substantiated as effective subject to the rigors of good science. • Professionals considering the Miller Method™ should portray the method as experimental, and should disclose this status to key decision makers influencing the child's intervention. • Association for Science in Autism Treatment

29. Nutritional Supplements and Megavitamin Therapy • Anecdotal and case reports have generated interest in the use of a variety of nutritionalsupplements to treat children with ASD. • Studies have shown mixed results • Some studies have been criticizedfor their methodological shortcomings and failure to address theissue of safety of use.

30. Elimination diets • The presence of allergies or food intolerance in children often stimulates families to explore unconventionaldiets. • Recent investigations failed to document a higher prevalenceof hypersensitivity to common food allergens in children with autism compared with controls.

31. Immune Globulin therapy • There is some evidence for immunologic abnormalitiesin small numbers of children with autism including abnormalitiesof T cells, B cells, natural killer cells, and the complementsystem • In a study of 20 children with ASD, 10 who received intravenousimmune globulin for a 6-month period reportedly demonstrated improvementsin social behavior, eye contact, echolalia, and speech articulation. • Note: The investigators did not use standard outcome measuresand did not state whether participants received other concurrenttreatments during the course of the study.

32. Immune Globulin therapy • Two recent reportsfailed to demonstrate significant changes in behaviors associatedwith autism in 17 children who received regular infusions of immuneglobulin for a 6-month period. • There is no scientific evidence to justifythe use of infusions of immune globulin to treat children with autism.

33. Secretin • Anecdotal reports of 3 children whose behaviors were seemingly helped by secretin generatedmuch publicity and interest in its treatment potential • Recent studies, however, have failed to demonstrateany scientific evidence to justify the use of secretin infusionto treat children with autism.

34. Chelation Therapy • Some theorize that autism might be caused by early childhood exposure to environmentaltoxicants, particularly mercury • To date, there areno published studies linking mercury exposure to the developmentof autism or demonstrating that children with autism have had greaterexposure to mercury than have unaffected children.

35. Evaluating Chelation Therapy • Although several chelating agents have been shown to accelerate mercury elimination from the body, there is no evidence that chelation therapy will improvedevelopmental function. • Moreover, chelating agents can have significant toxicity and cause allergic reaction. • Chelation therapy is therefore not recommended to treat autism

36. Applied Behavior Analysis(Behavior Management; Intensive Behavioral Intervention) • “Intensive, behavioral intervention early in life can increase the ability of the child with autism to acquire language and ability to learn.” • “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998).” • U.S. Surgeon General David Satcher, M.D., Ph.D.

37. Applied Behavior Analysis • “All programs educating children with autism should include intensive behavioral interventions and year-round education”. • The US Dept. of Education and the National Research Council's Report 'Educating Children with Autism‘ • “Since intensive behavioral programs appear to be effective in young children with autism, it is recommended that principles of applied behavior analysis and behavioral intervention strategies be included as an important element of any intervention program”. • NYS Department of Health Early Intervention: Clinical Practice Guidelines:

38. References • American Academy of Pediatrics Committee on Children With Disabilities. (2001). Technical Report: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children, Pediatrics, 107(5). • Fenske, E. C., Zalenski, S., Krantz, P. J., & McClannahan, L. E. (1985). Age of intervention and treatment outcome for autistic children in a comprehensive intervention program. Analysis and Intervention in Developmental Disabilities, 5, 49-58.

39. References • Jacobson, J. W. (2001). Early intensive behavioral intervention: Emergence of a consumer-driven service model. The Behavior Analyst, 23(2), 149-171. • McEachin, J. J, Smith, T., & Lovaas, O. I. (1993). Long term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97(4), 359-372. • Smith, T. (1993). Autism. In T. Giles (Ed.), Handbook of effective psychotherapy (pp. 107-133). NY: Plenum Press.

40. ABAResources • Books • Handleman, J. S., & Harris, S. L. (2001). Preschool education programs for children with autism. Austin, TX: Pro-Ed. • Harris, S. L., & Weiss, M. J., (1998). Right from the start: Behavioral intervention for young children with autism. Bethesda, MD: Woodbine House. • McClannahan, L. E., & Krantz, P. J. (1999). Activity schedules for children with autism: Teaching independent behavior. Bethesda, MD: Woodbine House.

41. ABA Resources • Books • Leaf, R., & McEachin, J. (Eds.). (1999). A work in progress: Behavior management strategies and a curriculum for intensive behavioral treatment of autism. New York: DRL Books. • Lovaas, O. I. (2002). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed. • Maurice, C., Green, G., & Fox, R. M. (Eds.). (2001). Making a difference: Behavioral intervention for autism. Austin, TX: Pro-Ed. • Maurice, C., Green, G., & Luce, S. C. (Eds.). (1996). Behavioral intervention for young children with autism. Austin, TX: Pro-Ed.

42. ABA Resources Websites • NY State Guidelines • www.health.state.ny.us/nysdoh/eip/autism/autism.htm - Behavior Analysis Certification Board • www.bacb.com • General Information about Autism • www.asatonline.org/autism_info.html • www.behavior.org/autism/ • pediatrics.aappublications.org/cgi/reprint/107/5/e85.pdf • books.nap.edu/books/0309072697/html/index.html