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Are There Scientifically Effective Treatments for Autism? By: talesfromthespectrum.

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1 Are There Scientifically Effective Treatments for Autism? By: talesfromthespectrum

2 Primer on Autism Spectrum Disorders In 1943, Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 children and introduced the label of early infantile autism into the English Language. The word “autism” means “escape from reality.” In 1943, Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 children and introduced the label of early infantile autism into the English Language. The word “autism” means “escape from reality.”

3 Primer on Autism Spectrum Disorders At the same time a German scientist, Dr. Hans Asperger, described a milder form of the disorder that became known as Asperger syndrome.

4 Primer on Autism Spectrum Disorders Thus these two disorders were described and are today listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR (fourth edition, text revision) as two of the five pervasive developmental disorders (PDD), more often referred to today as autism spectrum disorders (ASD).

5 Primer on Autism Spectrum Disorders All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior. National Institutes of Mental Health (NIMH) All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior. National Institutes of Mental Health (NIMH)

6 Primer on Autism Spectrum Disorders The pervasive developmental disorders, or autism spectrum disorders, range from a severe form called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD- NOS).

7 Primer on Autism Spectrum Disorders Autism is a spectrum disorder (or condition). It helps to think of the autistic spectrum as a continuum or line ranging from very extreme abnormalities in communication and relating to others (classic autism) to much more subtle (but still serious) difficulties as in High Functioning Autism or Asperger Syndrome. The continuum extends on into the wide range of behavior patterns we think of as "a bit different" or as just variations on "normal".

8 Primer on Autism Spectrum Disorders What is Autism? -Autism is a complex developmental disability that typically appears during the first three years of life. -The result of a neurological disorder that affects the functioning of the brain, autism and its associated behaviors have been estimated to occur in as many as 1 out of 150 individuals. What is Autism? -Autism is a complex developmental disability that typically appears during the first three years of life. -The result of a neurological disorder that affects the functioning of the brain, autism and its associated behaviors have been estimated to occur in as many as 1 out of 150 individuals.

9 Primer on Autism Spectrum Disorders -Autism is four times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries. -Family income, life-style, and educational levels do not affect the chance of autism’s occurrence. -Autism is four times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries. -Family income, life-style, and educational levels do not affect the chance of autism’s occurrence.

10 Primer on Autism Spectrum Disorders -Autism interferes with the normal development of the brain in areas of social interaction and communication skills. -Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. -The disorder makes it hard for them to communicate with others and relate to the outside world. -Autism interferes with the normal development of the brain in areas of social interaction and communication skills. -Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. -The disorder makes it hard for them to communicate with others and relate to the outside world.

11 Primer on Autism Spectrum Disorders -Individuals with autism may exhibit repeated body movements ( hand flapping, rocking), unusual responses to people or attachments to objects, and they may resist changes in routines. -The Autism Society of America -Individuals with autism may exhibit repeated body movements ( hand flapping, rocking), unusual responses to people or attachments to objects, and they may resist changes in routines. -The Autism Society of America

12 Primer on Autism Spectrum Disorders Let’s Look at a video glossary of behaviors common for individuals with autism to exhibit! www.autismspeaks.org Let’s look at the diagnostic criteria.... Let’s Look at a video glossary of behaviors common for individuals with autism to exhibit! www.autismspeaks.org Let’s look at the diagnostic criteria....

13 Before we start... There has been a lot of controversy surrounding the link between vaccines and autism. Some parents and researchers believe that either the thimerosal (a mercury based preservative that is no longer in vaccinations) or the combination of giving a vaccine containing live measles in the MMR vaccine caused or was an environmental factor that helped produce autism in children. There has been a lot of controversy surrounding the link between vaccines and autism. Some parents and researchers believe that either the thimerosal (a mercury based preservative that is no longer in vaccinations) or the combination of giving a vaccine containing live measles in the MMR vaccine caused or was an environmental factor that helped produce autism in children.

14 Vaccines and Autism...Is there a link? HOWEVER... The institute of Medicine (IOM) conducted a thorough review on the issue of a link between thimerosal and autism. A final report from the IOM, Immunization Safety Review: Vaccines and Autism, released in May 2004, stated that the committee did NOT find a link. Mercury has NOT been used in vaccines since 1999 with the exception of some flu vaccines. The MMR vaccine does not and never did contain thimerosal. The National Institute of Mental Health, 2007 HOWEVER... The institute of Medicine (IOM) conducted a thorough review on the issue of a link between thimerosal and autism. A final report from the IOM, Immunization Safety Review: Vaccines and Autism, released in May 2004, stated that the committee did NOT find a link. Mercury has NOT been used in vaccines since 1999 with the exception of some flu vaccines. The MMR vaccine does not and never did contain thimerosal. The National Institute of Mental Health, 2007

15 Vaccines and Autism...Is there a link? Another study quoted in the article “Alternative/Complementary Approaches to Treatment of Children with Autistic Spectrum Disorders” (Levy, 2002) also states that the scientific evidence does not support an association at a population level between ASD and MMR.

16 Treatments for Autism Spectrum Disorders It is helpful to think of all the treatments as falling into one of three categories for the sake of this discussion. We’ll refer to one category as biologicals another as non- biologicals, and another as comprehensive programs & communication and sensory techniques. It is helpful to think of all the treatments as falling into one of three categories for the sake of this discussion. We’ll refer to one category as biologicals another as non- biologicals, and another as comprehensive programs & communication and sensory techniques. Treatments for ASD Biological Non- biologicals Comprehensive Programs & communication and sensory techniques.

17 Treatments for Autism Spectrum Disorders Biologic agents can either can be bought over the counter by families or administered by a physician. The nonbiologic treatments are novel approaches to existing therapies that are provided by a therapist or may be self-administered by the family or child. The comprehensive program and communication and sensory techniques will include center-based methods that aim to reinforce desired behaviors and reduce inappropriate behaviors as well as therapies provided by certified therapists. This category includes...ABA, DIR, Denver Model, TEACCH, Sign Language, PECS, Sensory Integration Therapy, and Sensory Diets. Biologic agents can either can be bought over the counter by families or administered by a physician. The nonbiologic treatments are novel approaches to existing therapies that are provided by a therapist or may be self-administered by the family or child. The comprehensive program and communication and sensory techniques will include center-based methods that aim to reinforce desired behaviors and reduce inappropriate behaviors as well as therapies provided by certified therapists. This category includes...ABA, DIR, Denver Model, TEACCH, Sign Language, PECS, Sensory Integration Therapy, and Sensory Diets.

18 Listing of Treatments Biological Non-Biological Comprehensive Programs / Sensory and Communication Techniques Biological Non-Biological Comprehensive Programs / Sensory and Communication Techniques

19 Biologicals Let’s start with biological treatments. Let’s begin with Vitamin Supplements! Let’s start with biological treatments. Let’s begin with Vitamin Supplements!

20 Vitamin Supplements Vitamin B6 and Magnesium Any side effects? Vitamin B6 and Magnesium Any side effects?

21 Vitamin B6 with Magnesium Listed in the Defeat Autism Now! (DAN!) Protocol, proponents believe that taking mega-doses of vitamin B6 with magnesium to help absorption can help individuals with ASD behaviorally and communicatively. The theory behind this treatment posits that individuals with ASD have weaknesses in metabolism that reflect needs for B vitamins and other supplements. DAN! protocol states that, “There is good published evidence that supplements of vitamin B6 and magnesium reduce symptoms in children with autism.” (DAN! Protocol, 2002). The B6 dosage is at one to two times the Recommended Dietary Allowance. Listed in the Defeat Autism Now! (DAN!) Protocol, proponents believe that taking mega-doses of vitamin B6 with magnesium to help absorption can help individuals with ASD behaviorally and communicatively. The theory behind this treatment posits that individuals with ASD have weaknesses in metabolism that reflect needs for B vitamins and other supplements. DAN! protocol states that, “There is good published evidence that supplements of vitamin B6 and magnesium reduce symptoms in children with autism.” (DAN! Protocol, 2002). The B6 dosage is at one to two times the Recommended Dietary Allowance.

22 Vitamin B6 Evidence However.....only a few controlled scientific studies have shown any benefit, and those that do only show short-term benefits. Most studies refute claims of behavioral improvement, (Levy, 2002). Several studies have shown some symptomatic benefit, but are compromised by methodologic problems. Evidence to support the use of vitamin B6 as a CAM intervention for ASD is mixed and not conclusive, (Umbarger, 2007). A double-blind, placebo controlled study could not corroborate prior findings. Potential side effects include peripheral neuropathy and arrhythmia from magnesium overdose! However.....only a few controlled scientific studies have shown any benefit, and those that do only show short-term benefits. Most studies refute claims of behavioral improvement, (Levy, 2002). Several studies have shown some symptomatic benefit, but are compromised by methodologic problems. Evidence to support the use of vitamin B6 as a CAM intervention for ASD is mixed and not conclusive, (Umbarger, 2007). A double-blind, placebo controlled study could not corroborate prior findings. Potential side effects include peripheral neuropathy and arrhythmia from magnesium overdose!

23 DMG (Dimethylglycine) Any evidence? Any side effects? Any evidence? Any side effects?

24 DMG DMG is a non-protein amino acid. It can bind to folic acid and reduce levels of folic acid in the body. DAN! Protocol recommends taking DMG because they have found that folic acid levels are elevated in children with autism. DAN! recommends taking 125 mg three times daily. They state that DMG will “boost language performance with noticeable effects within days to weeks.” (DAN! Protocol, 2002). DMG is a non-protein amino acid. It can bind to folic acid and reduce levels of folic acid in the body. DAN! Protocol recommends taking DMG because they have found that folic acid levels are elevated in children with autism. DAN! recommends taking 125 mg three times daily. They state that DMG will “boost language performance with noticeable effects within days to weeks.” (DAN! Protocol, 2002).

25 DMG However...... a small case series determined that DMG was not found to beneficial. Problems with poor methodologies and inadequate dependent variable measures have plagued any study that purports DMG as a beneficial therapy. However...... a small case series determined that DMG was not found to beneficial. Problems with poor methodologies and inadequate dependent variable measures have plagued any study that purports DMG as a beneficial therapy.

26 Vitamin A (Cod Liver Oil) Any evidence? Any side-effects? Any evidence? Any side-effects?

27 Vitamin A (Cod Liver Oil) Vitamin A treatment is based on the assumption that some children with ASD are vulnerable to the impact of mercury exposure and that vitamin A supplementation can change this vulnerability. This is based on the hypothesis that genetically at-risk children are predisposed by G-Alpha protein defect. It is assumed by proponents of that theory that live measles vaccine depletes stores of vitamin A, resulting in metabolic changes and precipitating behavior changes in children with ASD. Vitamin A treatment is based on the assumption that some children with ASD are vulnerable to the impact of mercury exposure and that vitamin A supplementation can change this vulnerability. This is based on the hypothesis that genetically at-risk children are predisposed by G-Alpha protein defect. It is assumed by proponents of that theory that live measles vaccine depletes stores of vitamin A, resulting in metabolic changes and precipitating behavior changes in children with ASD.

28 Vitamin A (Cod Liver Oil) Supplementing with natural forms of vitamin like cod liver oil is purported to improve immune and visual function. However....no data is available about effectiveness. There are MULTIPLE SERIOUS side effects from overdose including increased pressure around the brain. Supplementing with natural forms of vitamin like cod liver oil is purported to improve immune and visual function. However....no data is available about effectiveness. There are MULTIPLE SERIOUS side effects from overdose including increased pressure around the brain.

29 Secretin Including Alkaline Salts and Bethanecol Any evidence? Any side effects? Including Alkaline Salts and Bethanecol Any evidence? Any side effects?

30 Secretin Is a hormone found in the gastrointestinal tract that helps control digestion. It is used intravenously during upper gastrointestinal endoscopy. It’s off-label use for children with ASD came to attention after publicity in 1998 on a national television show. The show highlighted a case report in the medical literature about 3 children with ASD who improved 5 weeks after secretin administration. Is a hormone found in the gastrointestinal tract that helps control digestion. It is used intravenously during upper gastrointestinal endoscopy. It’s off-label use for children with ASD came to attention after publicity in 1998 on a national television show. The show highlighted a case report in the medical literature about 3 children with ASD who improved 5 weeks after secretin administration.

31 Secretin These children started talking and decreased gastrointestinal symptoms as well as improved behavior. The effects wore off 6 weeks after the intravenous delivery of secretin. Since then, multiple evidence-based scientific studies have failed to confirm the claims of dramatic improvement in the symptoms. These children started talking and decreased gastrointestinal symptoms as well as improved behavior. The effects wore off 6 weeks after the intravenous delivery of secretin. Since then, multiple evidence-based scientific studies have failed to confirm the claims of dramatic improvement in the symptoms.

32 Secretin According to Umbarger in his article “State of the Evidence”, the evidence to support the use of secretin to treat people with ASD is overwhelmingly against its efficacy as a CAM intervention. Systematic reviews of randomized controlled trials found no difference between treatment and control group. DAN! Protocol still urges parents to try it and states that, “The clinical effectiveness of secretin has become more credible with a meta-analysis of the earlier negative studies,” (DAN! Protocol, 2002). According to Umbarger in his article “State of the Evidence”, the evidence to support the use of secretin to treat people with ASD is overwhelmingly against its efficacy as a CAM intervention. Systematic reviews of randomized controlled trials found no difference between treatment and control group. DAN! Protocol still urges parents to try it and states that, “The clinical effectiveness of secretin has become more credible with a meta-analysis of the earlier negative studies,” (DAN! Protocol, 2002).

33 Secretin Despite objective data disproving an association in their individual child, many families who participated in well- designed, double-blind controlled trials have continued using secretin. Potential side-effects include immunologic or allergic response related to repeated administration of foreign protein and seizures. Despite objective data disproving an association in their individual child, many families who participated in well- designed, double-blind controlled trials have continued using secretin. Potential side-effects include immunologic or allergic response related to repeated administration of foreign protein and seizures.

34 Alkaline Salts...in Lieu of Secretin Some families have explored ingestion of alkaline salts in an effort to provide natural secretion of secretin and other gastrointestinal peptides. Alkaline salts are POTENTIALLY HARMFUL to the liver. No studies of safety or efficacy have been completed, and there is the potential risk in altering the body’s natural acid-base homeostasis. Some families have explored ingestion of alkaline salts in an effort to provide natural secretion of secretin and other gastrointestinal peptides. Alkaline salts are POTENTIALLY HARMFUL to the liver. No studies of safety or efficacy have been completed, and there is the potential risk in altering the body’s natural acid-base homeostasis.

35 Bethanecol in lieu of secretin Is a medication used in gastrointestinal disorders such as gastroesophageal reflux. Some clinicians feel that it is a pancreatic stimulant and has an effect similar to secretin. Is a medication used in gastrointestinal disorders such as gastroesophageal reflux. Some clinicians feel that it is a pancreatic stimulant and has an effect similar to secretin.

36 Bethanecol One non-peer reviewed source reports that children’s symptoms improved after treatment with a combination of vitamin A in cod liver oil and bethanecol. No published results of controlled studies are available. One non-peer reviewed source reports that children’s symptoms improved after treatment with a combination of vitamin A in cod liver oil and bethanecol. No published results of controlled studies are available.

37 Anti-Virals Include antivirals and intravenous immunoglobulins (IVIGs). Any evidence? Any side effects? Include antivirals and intravenous immunoglobulins (IVIGs). Any evidence? Any side effects?

38 Theory Behind Antivirals Some researchers have suggested that ASD might be caused by a dysfunction in the immune system. There are some reports that have found abnormalities in the number and types of antibodies, immunoglobulins, lymphoctyes, and proteins in the central nervous systems of individuals with ASD. Some posit that the effect of the MMR Vaccine is behind these findings. DAN! researchers have stated that, “Measles virus is present in the intestinal lymph nodes of most children with autism who have been studied.” These findings have been used to justify treatment with IVIGs or antiviral medications. Some researchers have suggested that ASD might be caused by a dysfunction in the immune system. There are some reports that have found abnormalities in the number and types of antibodies, immunoglobulins, lymphoctyes, and proteins in the central nervous systems of individuals with ASD. Some posit that the effect of the MMR Vaccine is behind these findings. DAN! researchers have stated that, “Measles virus is present in the intestinal lymph nodes of most children with autism who have been studied.” These findings have been used to justify treatment with IVIGs or antiviral medications.

39 Antiviral Treatments DAN! Protocol states that, “The family of anti-herpes medicines is the one that has had the most use in children with autism....with good results.” However, even they admit that there have been no controlled studies of the use of these medicines. Although there are anecdotal reports of children treated with these medicines, there are no data on safety or efficacy. Controlled studies of IVIG treatment do not document significant improvement. The literature to date does not support the use of IVIG or antiviral treatments outside of research protocols. DAN! Protocol states that, “The family of anti-herpes medicines is the one that has had the most use in children with autism....with good results.” However, even they admit that there have been no controlled studies of the use of these medicines. Although there are anecdotal reports of children treated with these medicines, there are no data on safety or efficacy. Controlled studies of IVIG treatment do not document significant improvement. The literature to date does not support the use of IVIG or antiviral treatments outside of research protocols.

40 Antibiotics Includes probiotics, and medicines such as vancomycin. Any evidence? Any side effects? Includes probiotics, and medicines such as vancomycin. Any evidence? Any side effects?

41 Antibiotics and Probiotics...The Theory behind the treatment It is believed by some researchers that gastrointestinal dysfunction in children with ASD may cause an overgrowth of bacteria in the gut. The theory believes that their may be a possible yeast overgrowth, a primary dysfunction in the immune system, and antibiotic overuse that leads to the gastrointestinal problems and resulting overgrowth of bacteria. It is believed by some researchers that gastrointestinal dysfunction in children with ASD may cause an overgrowth of bacteria in the gut. The theory believes that their may be a possible yeast overgrowth, a primary dysfunction in the immune system, and antibiotic overuse that leads to the gastrointestinal problems and resulting overgrowth of bacteria.

42 Antibiotics and Probiotics Therefore, treatment with probiotics has been used to replace bad bacteria in the gut with good bacteria, such as acidophilus. Treatment with the powerful antibiotic vancomycin has also been used to eliminate a large number of bacteria in the gut. Therefore, treatment with probiotics has been used to replace bad bacteria in the gut with good bacteria, such as acidophilus. Treatment with the powerful antibiotic vancomycin has also been used to eliminate a large number of bacteria in the gut.

43 Antibiotics and Probiotics A case report on an Internet Listserv of several children who were treated in an open label trial of vancomycin caused the interest in its use as a possible treatment for ASD. DAN! Protocol mentions a course of gentamycin and vancomycin. They discuss a dose of 160 mg of gentamycin five times daily for 3 days combined with 250 mg of vancomycin 5 times daily. They then state that, “the consumption of large doses of probiotics and antifungals offer some hope of restoring a healthy flora while relieving symptoms that had been produced by a toxic bowel,” (DAN! Protocol, 2002). There have been no controlled scientific studies on vancomycin and its use as a treatment for individuals with ASD. Side effects of vancomycin include colitis-like inflammation and development of resistant strains of bacteria to this antibiotic. A case report on an Internet Listserv of several children who were treated in an open label trial of vancomycin caused the interest in its use as a possible treatment for ASD. DAN! Protocol mentions a course of gentamycin and vancomycin. They discuss a dose of 160 mg of gentamycin five times daily for 3 days combined with 250 mg of vancomycin 5 times daily. They then state that, “the consumption of large doses of probiotics and antifungals offer some hope of restoring a healthy flora while relieving symptoms that had been produced by a toxic bowel,” (DAN! Protocol, 2002). There have been no controlled scientific studies on vancomycin and its use as a treatment for individuals with ASD. Side effects of vancomycin include colitis-like inflammation and development of resistant strains of bacteria to this antibiotic.

44 Antifungals Includes nystatin, Diflucan, and other medications. Any evidence? Any side-effects? Includes nystatin, Diflucan, and other medications. Any evidence? Any side-effects?

45 Theory Behind Antifungals One theory of causation of autism involves yeast overgrowth in the gastrointestinal tract due to the excessive treatment with antibiotics. The theory suggests that the overgrowth of candida or yeast produces toxins which act centrally on the nervous system to produce the symptoms of autism. One theory of causation of autism involves yeast overgrowth in the gastrointestinal tract due to the excessive treatment with antibiotics. The theory suggests that the overgrowth of candida or yeast produces toxins which act centrally on the nervous system to produce the symptoms of autism.

46 Theory Behind Antifungals There is no evidence to support this theory and the initial evidence used to formulate this hypothesis was circumstantial. Horvath et al did not demonstrate yeast in samples taken from the small intestines of children with ASD. However, some still believe in this theory and in the treatment using antifungals. There is no evidence to support this theory and the initial evidence used to formulate this hypothesis was circumstantial. Horvath et al did not demonstrate yeast in samples taken from the small intestines of children with ASD. However, some still believe in this theory and in the treatment using antifungals.

47 Antifungals Side effects include liver toxicity and anemia. Anti-yeast diets have also been proposed (Dr. Crook) but these too have not been examined for efficacy in clinical trials. Side effects include liver toxicity and anemia. Anti-yeast diets have also been proposed (Dr. Crook) but these too have not been examined for efficacy in clinical trials.

48 Diets....Gluten-Free/Casein-Free Diet Also known as the GF/CF Diet. THIS IS A BIGGIE!!! (Thanks in part to media coverage and an overabundance of books on the subject!!!) Many families with children with ASD try this diet! Is there any evidence to support it? Any side-effects? Also known as the GF/CF Diet. THIS IS A BIGGIE!!! (Thanks in part to media coverage and an overabundance of books on the subject!!!) Many families with children with ASD try this diet! Is there any evidence to support it? Any side-effects?

49 The Theory Behind the Diet The Opioid Excess Theory is the main reason/impetus behind the GF/CF diet. This theory posits that children with ASD have permeability of the gastrointestinal system (“leaky gut syndrome”). Because of “holes” in the gastrointestinal system, proteins in wheat (gluten) and dairy (casein) are not digested and absorbed. The theory states that these fragments of gluten and casein proteins are in the blood system and act in a way that affect brain function in a similar manner as the class of drugs known as opiates. The theory believes these proteins then cause disturbances in the brain that manifest in autism and autism symptoms. The Opioid Excess Theory is the main reason/impetus behind the GF/CF diet. This theory posits that children with ASD have permeability of the gastrointestinal system (“leaky gut syndrome”). Because of “holes” in the gastrointestinal system, proteins in wheat (gluten) and dairy (casein) are not digested and absorbed. The theory states that these fragments of gluten and casein proteins are in the blood system and act in a way that affect brain function in a similar manner as the class of drugs known as opiates. The theory believes these proteins then cause disturbances in the brain that manifest in autism and autism symptoms.

50 Evidence to Support the GF/CF Diet There has been little scientific evidence to support this theory. There are difficulties in conducting studies on the GF/CF diet due to multiple confounding factors. Study problems have also included a lack of valid outcome measures and no placebo controls or challenges There are conflicting reports of laboratory studies to confirm gluten sensitivity in children with ASD. The Cochrane Collaboration also examined the effect of gluten- and casein-free diets for ASD and was unable to reach a consensus on the effectiveness of such interventions. It is listed on the “NOT RECOMMENDED” section of the article written by Umbarger due to lack of evidence supporting its effectiveness. There has been little scientific evidence to support this theory. There are difficulties in conducting studies on the GF/CF diet due to multiple confounding factors. Study problems have also included a lack of valid outcome measures and no placebo controls or challenges There are conflicting reports of laboratory studies to confirm gluten sensitivity in children with ASD. The Cochrane Collaboration also examined the effect of gluten- and casein-free diets for ASD and was unable to reach a consensus on the effectiveness of such interventions. It is listed on the “NOT RECOMMENDED” section of the article written by Umbarger due to lack of evidence supporting its effectiveness.

51 Side Effects of GF/CF Diet Because of its high media coverage, many families undertake this diet without medical and other professional guidance or nutritional support. There may be risks such as decreased calcium and vitamin D intake. It is recommended that families who are following a GF/CF or any elimination diet be monitored by primary care physicians. Because of its high media coverage, many families undertake this diet without medical and other professional guidance or nutritional support. There may be risks such as decreased calcium and vitamin D intake. It is recommended that families who are following a GF/CF or any elimination diet be monitored by primary care physicians.

52 Chelation Mercury detoxification Any evidence? Any side effects? Mercury detoxification Any evidence? Any side effects?

53 Chelation Involves the administration of a chemical either by mouth or through an intravenous catheter of a substance for the purpose of removing from the blood heavy metals such as lead, iron, and mercury. My son used a chelation cream obtained via a prescription from an environmental and occupational doctor that was made by a compounding pharmacy. The chelation cream was rubbed on his back nightly. I was the only one allowed to administer because I don’t have metal fillings and my husband did. (The stuff smells awful!) Involves the administration of a chemical either by mouth or through an intravenous catheter of a substance for the purpose of removing from the blood heavy metals such as lead, iron, and mercury. My son used a chelation cream obtained via a prescription from an environmental and occupational doctor that was made by a compounding pharmacy. The chelation cream was rubbed on his back nightly. I was the only one allowed to administer because I don’t have metal fillings and my husband did. (The stuff smells awful!)

54 Chelation The theory supporting chelation suggests that heavy metal intoxication, especially from mercury from.....VACCINES is responsible for the autism. The treatment does not have adequate scientific scrutiny!!! Protocols for chelation treatment in children with ASD have been proposed and are being implemented by practitioners without benefit of controlled scientific study of their efficacy for changes in symptoms of ASD. (i.e. DAN! Protocol). The theory supporting chelation suggests that heavy metal intoxication, especially from mercury from.....VACCINES is responsible for the autism. The treatment does not have adequate scientific scrutiny!!! Protocols for chelation treatment in children with ASD have been proposed and are being implemented by practitioners without benefit of controlled scientific study of their efficacy for changes in symptoms of ASD. (i.e. DAN! Protocol).

55 Chelation Studies have not been able to confirm chelation’s efficacy in producing developmental changes. The chemicals used for chelation (DMSA, DMPS) are NOT approved by the FDA for treatment of autism. They are potentially DANGEROUS with side effects of liver and kidney toxicity, fluid imbalance, and even death. Studies have not been able to confirm chelation’s efficacy in producing developmental changes. The chemicals used for chelation (DMSA, DMPS) are NOT approved by the FDA for treatment of autism. They are potentially DANGEROUS with side effects of liver and kidney toxicity, fluid imbalance, and even death.

56 Chelation Umbarger states that, “Many families, eager to find a way to improve the outcomes for their child with ASD, have taken the road toward potentially dangerous interventions to try and cure ASD through chelation therapy. This has resulted in at least one death associated with chelation as an intervention for ASD.” Howard Carpenter, the executive director of the Advisory Board on Autism-Related Disorders, said it was just a matter of time before there would be a death linked to the therapy. Carpenter went on to state that, “Parents are so desperate. Some are willing to try anything.” Umbarger states that, “Many families, eager to find a way to improve the outcomes for their child with ASD, have taken the road toward potentially dangerous interventions to try and cure ASD through chelation therapy. This has resulted in at least one death associated with chelation as an intervention for ASD.” Howard Carpenter, the executive director of the Advisory Board on Autism-Related Disorders, said it was just a matter of time before there would be a death linked to the therapy. Carpenter went on to state that, “Parents are so desperate. Some are willing to try anything.”

57 Non-Biologicals Auditory Integration Therapy (AIT) Faciliated Communication Craniosacral Manipulation Interactive Metronome Irlen Lenses Any evidence? Any side effects? Auditory Integration Therapy (AIT) Faciliated Communication Craniosacral Manipulation Interactive Metronome Irlen Lenses Any evidence? Any side effects?

58 Auditory Integration Therapy (AIT) The goal of this therapy is to decrease sensitivity that some individuals with ASD have to sound. Proponents of AIT suggest that music can “massage” the middle ear, reduce hypersensitivities and improve overall auditory processing ability. Involves systematic exposure to altered music by headphones. Expensive. I was quoted a price of over $2,000 in 2003! The goal of this therapy is to decrease sensitivity that some individuals with ASD have to sound. Proponents of AIT suggest that music can “massage” the middle ear, reduce hypersensitivities and improve overall auditory processing ability. Involves systematic exposure to altered music by headphones. Expensive. I was quoted a price of over $2,000 in 2003!

59 AIT...Evidence? The American Speech and Hearing Association (ASHA) has recommended against the use of AIT. The Cochrane Collaboration also examined evidence on the effectiveness of AIT as an intervention for ASD. Inconsistent methodologies used in these studies precluded the use of meta-analysis. Their research found that ½ the studies indentified positive benefits, while the other ½ failed to demonstrate any efficacy. A well designed study described in a recent position paper of the American Academy of Pediatrics did not confirm positive effects and the academy does not endorse this treatment. The National Research Council states that studies have not supported either AIT’s theoretical basis or the specificity of its effectiveness. The American Speech and Hearing Association (ASHA) has recommended against the use of AIT. The Cochrane Collaboration also examined evidence on the effectiveness of AIT as an intervention for ASD. Inconsistent methodologies used in these studies precluded the use of meta-analysis. Their research found that ½ the studies indentified positive benefits, while the other ½ failed to demonstrate any efficacy. A well designed study described in a recent position paper of the American Academy of Pediatrics did not confirm positive effects and the academy does not endorse this treatment. The National Research Council states that studies have not supported either AIT’s theoretical basis or the specificity of its effectiveness.

60 Facilitated Communication FC is a method for providing support to individuals with severe communication problems as they convey typed messages. Supports consist of emotional (encouragement); physical (stable physical contact, supporting the forearm or wrist, pulling back the communicator’s hand, helping isolate the index finger); and communicative (ignoring stereotypic behaviors and utterances, using structured questions) components to stimulate communication. FC is a method for providing support to individuals with severe communication problems as they convey typed messages. Supports consist of emotional (encouragement); physical (stable physical contact, supporting the forearm or wrist, pulling back the communicator’s hand, helping isolate the index finger); and communicative (ignoring stereotypic behaviors and utterances, using structured questions) components to stimulate communication.

61 Facilitated Communication Not recommended by ASHA due to failure to meet scientific standards for efficacy. ASHA’s position statement on FC expressed concern regarding the negative consequences from misrepresentation of message attribition. Other studies on FC also demonstrate that positive results can not be confirmed when examined in a blinded fashion and that effects seen in children have subsequently been shown to be a function of activities of the facilitator. The National Research Council states that quantitative studies reveal no validation for FC. Not recommended by ASHA due to failure to meet scientific standards for efficacy. ASHA’s position statement on FC expressed concern regarding the negative consequences from misrepresentation of message attribition. Other studies on FC also demonstrate that positive results can not be confirmed when examined in a blinded fashion and that effects seen in children have subsequently been shown to be a function of activities of the facilitator. The National Research Council states that quantitative studies reveal no validation for FC.

62 Craniosacral Manipulation..Irlen Lenses...Interactive Metronome Craniosacral manipulation is a type of manipulation done by chiropractors, PTs, and OTs trained in the technique. It is said that by massaging the skull, the flow of cerebrospinal fluid is altered which affects behavioral change. No scientific treatment data are available to confirm this. Craniosacral manipulation is a type of manipulation done by chiropractors, PTs, and OTs trained in the technique. It is said that by massaging the skull, the flow of cerebrospinal fluid is altered which affects behavioral change. No scientific treatment data are available to confirm this.

63 Irlen Lenses A variety of visual therapies (including oculomotor exercises, colored filters, and ambient prism lenses) have been used with children with autism in attempts to improve visual processing or visual- spatial perception. Are purported to help individuals who have trouble discriminating visual stimuli due to sensitivity to lighting, colors, or color contrasts. According to the National Research Council (2001), there are no empirical studies regarding the efficacy of the use of Irlen lenses or oculomotor therapies specifically in children with autism. Furthermore according the Council, studies have not provided clear support for either its theoretical or its empirical basis. A variety of visual therapies (including oculomotor exercises, colored filters, and ambient prism lenses) have been used with children with autism in attempts to improve visual processing or visual- spatial perception. Are purported to help individuals who have trouble discriminating visual stimuli due to sensitivity to lighting, colors, or color contrasts. According to the National Research Council (2001), there are no empirical studies regarding the efficacy of the use of Irlen lenses or oculomotor therapies specifically in children with autism. Furthermore according the Council, studies have not provided clear support for either its theoretical or its empirical basis.

64 Interactive Metronome Theoretical Treatment. The Interactive Metronome© (IM) is a computer-based assessment and training program designed to improve the brains processing abilities that affect attention, motor planning, and sequencing. No studies have been completed. Theoretical Treatment. The Interactive Metronome© (IM) is a computer-based assessment and training program designed to improve the brains processing abilities that affect attention, motor planning, and sequencing. No studies have been completed.

65 Comprehensive Programs and Communication & Sensory Techniques These include the comprehensive programs such as Applied Behavior Analysis, DIR, TEACCH, and the Denver Method. The communication techniques under this heading included picture exchange systems and sign language. The Sensory techniques mentioned here include sensory integration therapy and sensory diets like the one called for in the Wilbarger Protocol. These include the comprehensive programs such as Applied Behavior Analysis, DIR, TEACCH, and the Denver Method. The communication techniques under this heading included picture exchange systems and sign language. The Sensory techniques mentioned here include sensory integration therapy and sensory diets like the one called for in the Wilbarger Protocol.

66 Let’s Start with Communication Techniques! The most widely used exchange system, the Picture Exchange Communication System (PECS) developed by Bondy and Frost is a structured program that teaches the exchange of symbols for communication. PECS is a systematic behavioral program that teaches a child to initiate communicative requests by approaching a communicative partner and exchanging the symbol for the desired object. It includes protocols for expanding communication from single to multiple words and for increasing communicative function from requesting to labeling and commenting. The most widely used exchange system, the Picture Exchange Communication System (PECS) developed by Bondy and Frost is a structured program that teaches the exchange of symbols for communication. PECS is a systematic behavioral program that teaches a child to initiate communicative requests by approaching a communicative partner and exchanging the symbol for the desired object. It includes protocols for expanding communication from single to multiple words and for increasing communicative function from requesting to labeling and commenting.

67 PECS Research/Evidence Base Bondy and Frost (1994) reported a case review of a group of preschoolers with autism who were taught using PECS. Of 19 children who used PECS for less than 1 year, only two (10%) acquired independent speech, while five used speech with PECS, and 12 children used PECS as their sole communication. Of 66 children using PECS for 2 years, 39 (59%) developed independent speech, 20 developed speech as they used PECS, and 7 used only PECS. Thus, for most preschoolers introduced to PECS, it took more than 1 year after initiating PECS to observe independent speech, and many continued to have very limited spontaneous use of language. Speech tended to develop once the children were able to use 30-100 symbols to communicate (Frost and Bondy 1994). Furthermore, the overall communication development of the children was strongly related to their overall level of intellectual functioning. Bondy and Frost (1994) reported a case review of a group of preschoolers with autism who were taught using PECS. Of 19 children who used PECS for less than 1 year, only two (10%) acquired independent speech, while five used speech with PECS, and 12 children used PECS as their sole communication. Of 66 children using PECS for 2 years, 39 (59%) developed independent speech, 20 developed speech as they used PECS, and 7 used only PECS. Thus, for most preschoolers introduced to PECS, it took more than 1 year after initiating PECS to observe independent speech, and many continued to have very limited spontaneous use of language. Speech tended to develop once the children were able to use 30-100 symbols to communicate (Frost and Bondy 1994). Furthermore, the overall communication development of the children was strongly related to their overall level of intellectual functioning.

68 PECS Research/Evidence Base According to the National Research Council (2001), the only other published study using PECS was reported by Schwartz et al., (1998) on 11 children with ASD who attended an integrated preschool. These children required an average of 11 months to exchange “I want + symbol” sentence strips with adults and 14 months with peers. In this study, 6 (55%) of the 11 children developed functional and complex speech, and the 5 who did not were able to use PECS effectively to communicate. The authors state, however, that their study DID NOT control for maturation or the effects of other components of their school program. Whether comparable outcomes with PECS with the development of speech would have occurred without the use of other specific interventions or in older children is not known. Therefore....evidence of the efficacy of using a picture/symbol exchange system with children with ASD is only in a case study format and not in double-blind, controlled treatment research designs needed to definitively state whether it can be termed a successful intervention for individuals with ASD. According to the National Research Council (2001), the only other published study using PECS was reported by Schwartz et al., (1998) on 11 children with ASD who attended an integrated preschool. These children required an average of 11 months to exchange “I want + symbol” sentence strips with adults and 14 months with peers. In this study, 6 (55%) of the 11 children developed functional and complex speech, and the 5 who did not were able to use PECS effectively to communicate. The authors state, however, that their study DID NOT control for maturation or the effects of other components of their school program. Whether comparable outcomes with PECS with the development of speech would have occurred without the use of other specific interventions or in older children is not known. Therefore....evidence of the efficacy of using a picture/symbol exchange system with children with ASD is only in a case study format and not in double-blind, controlled treatment research designs needed to definitively state whether it can be termed a successful intervention for individuals with ASD.

69 Sign Language Any scientific evidence presented to this effect?

70 Evidence Base for Sign Language According to the National Research Council (2001), there have been numerous experimental studies of the efficacy of teaching sign language to children with autism. These studies have demonstrated that total communication (speech plus sign language) training resulted in faster and more complete receptive and expressive vocabulary acquisition than speech training alone for many children with autism. According to the National Research Council (2001), there have been numerous experimental studies of the efficacy of teaching sign language to children with autism. These studies have demonstrated that total communication (speech plus sign language) training resulted in faster and more complete receptive and expressive vocabulary acquisition than speech training alone for many children with autism.

71 Evidence Base for Sign Language In a study cited by the National Research Council, Seal and Bonvillian (1997) analyzed sign language formation of 14 low- functioning students with autism and found that the size of the sign vocabulary and the accuracy of sign formation were highly correlated with measures of fine motor abilities and tests of apraxia. Apraxia is a neurogenic impairment of planning, executing, and sequencing of movements. These findings support the role of a motor impairment in the level of competence attained in sign language and speech acquisition for children with autism, in addition to their social- communication and symbolic deficits. THUSLY.. It is very rare to find a child with autism who learns to sign fluently (in sentences) and flexibly. Signing is not generally an entry point into a complex, flexible system. (National Research Council, 2001). In a study cited by the National Research Council, Seal and Bonvillian (1997) analyzed sign language formation of 14 low- functioning students with autism and found that the size of the sign vocabulary and the accuracy of sign formation were highly correlated with measures of fine motor abilities and tests of apraxia. Apraxia is a neurogenic impairment of planning, executing, and sequencing of movements. These findings support the role of a motor impairment in the level of competence attained in sign language and speech acquisition for children with autism, in addition to their social- communication and symbolic deficits. THUSLY.. It is very rare to find a child with autism who learns to sign fluently (in sentences) and flexibly. Signing is not generally an entry point into a complex, flexible system. (National Research Council, 2001).

72 A Final Word on Augmentative and Alternative Communication (AAC) This includes sign language, PECS, and FC... The National Research Council Recommends.... The effectiveness of communication and language intervention programs needs to be documented relative to these core deficits and relative to the target goal of communicative competence in natural language learning environments with an emphasis on acquisition of functional skills that support successful communicative interactions. The efficacy of communication intervention should be determined by meaningful outcome measures in social communicative parameters, not just on the acquisition of verbal behaviors. Intervention research is needed that helps predict which specific intervention programs or approaches work best with which children. Intervention research is not yet available to predict which specific intervention approaches or strategies work best with which children. No one approach is equally effective for all children, and not all children in outcome studies have benefited to the same degree. National Research Council, 2001 This includes sign language, PECS, and FC... The National Research Council Recommends.... The effectiveness of communication and language intervention programs needs to be documented relative to these core deficits and relative to the target goal of communicative competence in natural language learning environments with an emphasis on acquisition of functional skills that support successful communicative interactions. The efficacy of communication intervention should be determined by meaningful outcome measures in social communicative parameters, not just on the acquisition of verbal behaviors. Intervention research is needed that helps predict which specific intervention programs or approaches work best with which children. Intervention research is not yet available to predict which specific intervention approaches or strategies work best with which children. No one approach is equally effective for all children, and not all children in outcome studies have benefited to the same degree. National Research Council, 2001

73 Sensory Integration Therapies Any evidence to support these therapies?

74 Sensory Integration Therapies Sensory integration therapy emphasizes the neurological processing of sensory information as a foundation for learning of higher-level skills (Ayers, 1972). The goal is to improve subcortical (sensory integrative) somatosensory and vestibular functions by providing controlled sensory experiences to produce adaptive motor responses (National Research Council, 2001). The hypothesis is that with these experiences, the nervous system better modulates, organizes, and integrates information from the environment, which in turn provides a foundation for further adaptive responses and higher order learning. Sensory integration therapy emphasizes the neurological processing of sensory information as a foundation for learning of higher-level skills (Ayers, 1972). The goal is to improve subcortical (sensory integrative) somatosensory and vestibular functions by providing controlled sensory experiences to produce adaptive motor responses (National Research Council, 2001). The hypothesis is that with these experiences, the nervous system better modulates, organizes, and integrates information from the environment, which in turn provides a foundation for further adaptive responses and higher order learning.

75 Sensory Integration Therapies Evidence The National Research Council cites several studies that have shown benefits of these sensory therapies on individual children. One study demonstrated that some children with ASD who were studied showed significant improvements in play and demonstrated less “non-engaged” play. In this same study, only one child had significant improvements with adult interactions, however non have improved peer interactions. The National Research Council cites several studies that have shown benefits of these sensory therapies on individual children. One study demonstrated that some children with ASD who were studied showed significant improvements in play and demonstrated less “non-engaged” play. In this same study, only one child had significant improvements with adult interactions, however non have improved peer interactions.

76 Sensory Diet Other approaches based on sensory integration therapy include “sensory diet” in which the environment is filled with sensory-based activities to satisfy a child’s sensory needs. No empirical studies of these approaches were identified for children with autism or related populations (National Research Council, 2001). Other approaches based on sensory integration therapy include “sensory diet” in which the environment is filled with sensory-based activities to satisfy a child’s sensory needs. No empirical studies of these approaches were identified for children with autism or related populations (National Research Council, 2001).

77 Sensory Stimulation Techniques These vary, but the underlying purpose of these is to provide passive sensory stimulation. The basis for these techniques is that a given sensory experience may facilitate or inhibit the nervous system and create behavioral changes. Examples of this approach include “deep pressure” (proprioceptive input) to provide calming input by massage or joint compression or through the use of weighted vests. Vestibular (movement) stimulation is another example that is sometimes used to modulate arousal, facilitate muscle tone, or to increase vocalizations. These interventions have also not yet been supported by empirical studies (National Research Council, 2001). These vary, but the underlying purpose of these is to provide passive sensory stimulation. The basis for these techniques is that a given sensory experience may facilitate or inhibit the nervous system and create behavioral changes. Examples of this approach include “deep pressure” (proprioceptive input) to provide calming input by massage or joint compression or through the use of weighted vests. Vestibular (movement) stimulation is another example that is sometimes used to modulate arousal, facilitate muscle tone, or to increase vocalizations. These interventions have also not yet been supported by empirical studies (National Research Council, 2001).

78 Evidence and Recommendations on Sensory and Motor Programming Unusual sensory responses such as hypo- and hyperresponses, preoccupations with sensory features of objects, and paradoxical responses to sensory stimuli are common concerns in children with autism spectrum disorders (National Research Council, 2001). Given that most educational environments involve many sensory demands such as noise levels and unpredictable stimuli like fire alarms, interventions may need to address the individualized sensory processing needs of children who have such difficulties. However, exactly how this should be done has not been addressed in scientific investigations. There is no consistent evidence that sensory-based treatments have specific effects, in many cases, the theories underlying such approaches have not withstood careful consideration (Dawson and Watling, 2000). Unusual sensory responses such as hypo- and hyperresponses, preoccupations with sensory features of objects, and paradoxical responses to sensory stimuli are common concerns in children with autism spectrum disorders (National Research Council, 2001). Given that most educational environments involve many sensory demands such as noise levels and unpredictable stimuli like fire alarms, interventions may need to address the individualized sensory processing needs of children who have such difficulties. However, exactly how this should be done has not been addressed in scientific investigations. There is no consistent evidence that sensory-based treatments have specific effects, in many cases, the theories underlying such approaches have not withstood careful consideration (Dawson and Watling, 2000).

79 Evidence and Recommendations on Sensory and Motor Programming A lack of empirical data does not necessarily mean that a treatment is ineffective, but only that efficacy has not been objectively demonstrated (National Research Council, 2001). There were some nonspecific positive findings in the studies of interventions reviewed, and there is a need to address at least functional aspects of motor difficulties, particularly as they affect social, adaptive, and academic functioning. According to the National Research Council, future research in these areas need to include well controlled, systematic studies of effectiveness. Only such research can answer not only what is effective, but with whom and under what conditions (2001). A lack of empirical data does not necessarily mean that a treatment is ineffective, but only that efficacy has not been objectively demonstrated (National Research Council, 2001). There were some nonspecific positive findings in the studies of interventions reviewed, and there is a need to address at least functional aspects of motor difficulties, particularly as they affect social, adaptive, and academic functioning. According to the National Research Council, future research in these areas need to include well controlled, systematic studies of effectiveness. Only such research can answer not only what is effective, but with whom and under what conditions (2001).

80 Comprehensive Treatment Programs Includes Lovaas Applied Behavioral Analysis, DIR, The Denver Method, and TEACCH model. What were findings on these programs? Were they found successful? Is there evidence to support them as scientifically based treatments for ASD? Includes Lovaas Applied Behavioral Analysis, DIR, The Denver Method, and TEACCH model. What were findings on these programs? Were they found successful? Is there evidence to support them as scientifically based treatments for ASD?

81 Introduction to Comprehensive Programs According to the National Research Council, various comprehensive treatment programs encompass a number of different philosophical and theoretical positions, ranging from strict operant discrimination learning (Lovaas) to broader applied behavior analysis programs, and those that highlight incidental learning, to more developmentally oriented programs (DENVER, DIR). TEACHH is eclectic with elements of both developmental and behavioral orientations (2001).

82 Comprehensive Program Elements These are common to all the comprehensive programs mentioned in this discussion. 1. Intervention Begins Early 2. Intervention is Intensive in Hours (20-45 hours of intervention per week) 3. Families Are Actively Involved in Their Children’s Intervention 4. Staff Are Highly Trained and Specialized in Autism 5. There is Ongoing Objective Assessment of a Child’s Progress 6. Curricula Provide Systematic, Planful Teaching 7. Highly Supportive Physical, Temporal, and Staffing Environments 8. Focus on Communication Goals and Other Developmental Areas 9. Carefully Planned, Research-Based, Teaching Procedures Include Plans for Generalization and Maintenance of Skills 10. Individualized Intervention Plans used to Adjust for the Wide Range of Children’s Strengths and Needs 11. Transitions from Preschool to School Are Planned and Supported These are common to all the comprehensive programs mentioned in this discussion. 1. Intervention Begins Early 2. Intervention is Intensive in Hours (20-45 hours of intervention per week) 3. Families Are Actively Involved in Their Children’s Intervention 4. Staff Are Highly Trained and Specialized in Autism 5. There is Ongoing Objective Assessment of a Child’s Progress 6. Curricula Provide Systematic, Planful Teaching 7. Highly Supportive Physical, Temporal, and Staffing Environments 8. Focus on Communication Goals and Other Developmental Areas 9. Carefully Planned, Research-Based, Teaching Procedures Include Plans for Generalization and Maintenance of Skills 10. Individualized Intervention Plans used to Adjust for the Wide Range of Children’s Strengths and Needs 11. Transitions from Preschool to School Are Planned and Supported

83 Comprehensive Program Elements All of the models individualize programming around the needs of particular children, and intervention regimens are designed to be implemented in a flexible manner. Essential differences in program design pertain to whether the curriculum is aimed at addressing some or all of a child’s needs and whether the program staff provide direct service or serve as consultants to external providers. All of the models individualize programming around the needs of particular children, and intervention regimens are designed to be implemented in a flexible manner. Essential differences in program design pertain to whether the curriculum is aimed at addressing some or all of a child’s needs and whether the program staff provide direct service or serve as consultants to external providers.

84 Descriptions of Models: Denver Model at the University of Colorado Health Sciences Center This program originally opened in 1981 as the Playschool Model, which was a demonstration day treatment program. In 1998, the treatment unit was closed, and the intervention format was changed to the more natural contexts available in home and preschool environments with typical peers (Rogers et al., 2000). This developmentally oriented instructional approach is based on the premise that play is a primary vehicle for learning social, emotional, communicative, and cognitive skills during early childhood. The role of the adult and the purpose of play activities vary across learning objectives. This program originally opened in 1981 as the Playschool Model, which was a demonstration day treatment program. In 1998, the treatment unit was closed, and the intervention format was changed to the more natural contexts available in home and preschool environments with typical peers (Rogers et al., 2000). This developmentally oriented instructional approach is based on the premise that play is a primary vehicle for learning social, emotional, communicative, and cognitive skills during early childhood. The role of the adult and the purpose of play activities vary across learning objectives.

85 Denver Model The overarching curriculum goals are to increase cognitive levels, particularly in the area of symbolic functions; increase communication through gestures, signs, and words; enhance social and emotional growth through interpersonal relationships with adults and peers. It is a developmental approach in that it was originally based on Piaget’s (1966) experientially based theory of cognitive development. The underlying assumption was that, if intervention is directed at establishing strong, affectionate, interpersonal relationships, then it may be possible to accomplish broad developmentally crucial improvements. From this perspective, it has been argued that the traditional behavioral approach of teaching specific behaviors is too narrow to have an impact on the fundamental nature of ASD (Rogers et al., 1986). The overarching curriculum goals are to increase cognitive levels, particularly in the area of symbolic functions; increase communication through gestures, signs, and words; enhance social and emotional growth through interpersonal relationships with adults and peers. It is a developmental approach in that it was originally based on Piaget’s (1966) experientially based theory of cognitive development. The underlying assumption was that, if intervention is directed at establishing strong, affectionate, interpersonal relationships, then it may be possible to accomplish broad developmentally crucial improvements. From this perspective, it has been argued that the traditional behavioral approach of teaching specific behaviors is too narrow to have an impact on the fundamental nature of ASD (Rogers et al., 1986).

86 DIR: “Developmental, Individual Differences, Relationship-based approach.” As in the Denver model, this relationship-based approach is derived from a developmental orientation. There is a home component of intensive interactive floor- time work, in which an adult follows a child’s lead in play and interaction, and children concurrently participate in individual therapies and early education programs. Intense floor time session are aimed at “pulling the child into a greater degree of pleasure.” As in the Denver model, this relationship-based approach is derived from a developmental orientation. There is a home component of intensive interactive floor- time work, in which an adult follows a child’s lead in play and interaction, and children concurrently participate in individual therapies and early education programs. Intense floor time session are aimed at “pulling the child into a greater degree of pleasure.”

87 DIR (Floortime) Model The program’s stated goal “is to help the child master the healthy emotional milestones that were missed in his early development and that are critical to learning. Building these foundations helps children overcome their symptoms more effectively than simply trying to change the symptoms alone” (Greenspan and Wieder, 1999). The curriculum is aimed at six developmental capacities: shared attention and regulation; engagement; affective reciprocity and communications through gestures; complex, pre-symbolic, shared social communication and problem solving; symbolic and creative use of ideas; and logical and abstract use of ideas and thing (Greenspan and Wieder, 1999). www.floortimefoundation.com The program’s stated goal “is to help the child master the healthy emotional milestones that were missed in his early development and that are critical to learning. Building these foundations helps children overcome their symptoms more effectively than simply trying to change the symptoms alone” (Greenspan and Wieder, 1999). The curriculum is aimed at six developmental capacities: shared attention and regulation; engagement; affective reciprocity and communications through gestures; complex, pre-symbolic, shared social communication and problem solving; symbolic and creative use of ideas; and logical and abstract use of ideas and thing (Greenspan and Wieder, 1999). www.floortimefoundation.com

88 TEACCH, University of North Carolina School of Medicine at Chapel Hill Treatment and Education of Autistic and related Communication handicapped CHildren. Program was founded in 1972 by Eric Schopler as a statewide autism program that serves people with ASD of all ages. Regional centers provide regular consultation and training to parents, schools, preschools, daycare centers, and other placements throughout the state. Treatment and Education of Autistic and related Communication handicapped CHildren. Program was founded in 1972 by Eric Schopler as a statewide autism program that serves people with ASD of all ages. Regional centers provide regular consultation and training to parents, schools, preschools, daycare centers, and other placements throughout the state. Mission: To diagnose, treat, and educate on the neurological disability, autism.

89 TEACCH Is based on a structured teaching approach, in which environments are organized with clear, concrete, visual information. Parents are cotherapists and taught strategies for working with their children. Programming is based on individualized assessments of a child’s strengths, learning style, interests, and needs, so that the materials selected, the activities developed, the work system for the child, and the schedule for learning are tailored to this assessment information and the needs of the family. Is based on a structured teaching approach, in which environments are organized with clear, concrete, visual information. Parents are cotherapists and taught strategies for working with their children. Programming is based on individualized assessments of a child’s strengths, learning style, interests, and needs, so that the materials selected, the activities developed, the work system for the child, and the schedule for learning are tailored to this assessment information and the needs of the family.

90 TEACCH TEACCH has developed a communication curriculum that makes use of behavioral procedures, with adjustments that incorporate more naturalistic procedures along with alternative communication strategies for nonverbal children. National Research Council, 2001 www.teacch.com TEACCH has developed a communication curriculum that makes use of behavioral procedures, with adjustments that incorporate more naturalistic procedures along with alternative communication strategies for nonverbal children. National Research Council, 2001 www.teacch.com

91 Lovaas Applied Behavioral Analysis (The UCLA Young Autism Project) Developed by Ivar Lovaas, this program was based on earlier research with older children and adolescents with autism. Its applications to young children with autism began during the 1970s. The behavioral intervention curriculum is delivered in a one-on-one discrete-trial format, which is implemented by parents and trained therapists who work in a child’s home. Developed by Ivar Lovaas, this program was based on earlier research with older children and adolescents with autism. Its applications to young children with autism began during the 1970s. The behavioral intervention curriculum is delivered in a one-on-one discrete-trial format, which is implemented by parents and trained therapists who work in a child’s home.

92 What is a discrete trial format? SD R SR SD = Discriminative Stimulus - The instruction given to elicit a response R = Response - The child’s action in response to an SD. SR = Reinforcing Stimulus - The consequence following the child’s response that changes the likelihood of that behavior re-occurring again in the future. Rewards will increase the likelihood of the behavior re-occurring, and no reward or an informational "no" will decrease the likelihood of the behavior reoccurring. SD R SR SD = Discriminative Stimulus - The instruction given to elicit a response R = Response - The child’s action in response to an SD. SR = Reinforcing Stimulus - The consequence following the child’s response that changes the likelihood of that behavior re-occurring again in the future. Rewards will increase the likelihood of the behavior re-occurring, and no reward or an informational "no" will decrease the likelihood of the behavior reoccurring.

93 Discrete Trial Format Can be viewed as a form of behavior modification. Behavior Modification - manipulates the stimuli (SD) and the consequence (SR±) in order to change the behavior (R). Can be viewed as a form of behavior modification. Behavior Modification - manipulates the stimuli (SD) and the consequence (SR±) in order to change the behavior (R).

94 Discrete-Trial Format Has its basis in the theory of operant conditioning. All behaviors are responses to stimuli in the environment. All behaviors are followed by consequences that affect the probability of the same behavior occurring again. If a behavior is followed by a pleasant event, that behavior is likely to reoccur. If a behavior is followed by an unpleasant event, that behavior is unlikely to reoccur. Has its basis in the theory of operant conditioning. All behaviors are responses to stimuli in the environment. All behaviors are followed by consequences that affect the probability of the same behavior occurring again. If a behavior is followed by a pleasant event, that behavior is likely to reoccur. If a behavior is followed by an unpleasant event, that behavior is unlikely to reoccur.

95 Lovaas UCLA Young Autism Project Model The treatment is focused primarily on developing language and early cognitive skills and decreasing excessive rituals, tantrums, and aggressive behaviors. The first year of intervention is aimed at teaching children to respond to basic requests, to imitate, to begin to play with toys, and to interact with their families. The treatment is focused primarily on developing language and early cognitive skills and decreasing excessive rituals, tantrums, and aggressive behaviors. The first year of intervention is aimed at teaching children to respond to basic requests, to imitate, to begin to play with toys, and to interact with their families.

96 UCLA Young Autism Project Model During the second year, the focus on teaching language continues; the most recent curriculum descriptions note a shift toward teaching emotion discriminations, pre-academic skills, and observational learning (Smith et al., 2000).

97 Comprehensive Program Intervention Studies There is a need for well-controlled clinical outcome research on these and other models of service delivery. The available research strongly suggests that a substantial subset of children with ASD are able to make marked progress during the period that they receive intensive early intervention, and nearly all children with ASD appear to show some benefit. National Research Council, 2001 There is a need for well-controlled clinical outcome research on these and other models of service delivery. The available research strongly suggests that a substantial subset of children with ASD are able to make marked progress during the period that they receive intensive early intervention, and nearly all children with ASD appear to show some benefit. National Research Council, 2001

98 Comprehensive Program Intervention Studies HOWEVER... the research to date is not at a level of experimental sophistication that permits unequivocal statements on the efficacy of a given approach, nor do the data support claims of “recovery” from ASD as a function of early intervention. There is no outcome study published in a peer- reviewed journal that supports comparative statements of the superiority of one model or approach over another. Much of the current outcome information is in the form of program evaluation data or measures of children’s progress when comparisons are made before and after intervention without control groups or blinded assessments of outcome. National Research Council, 2001 HOWEVER... the research to date is not at a level of experimental sophistication that permits unequivocal statements on the efficacy of a given approach, nor do the data support claims of “recovery” from ASD as a function of early intervention. There is no outcome study published in a peer- reviewed journal that supports comparative statements of the superiority of one model or approach over another. Much of the current outcome information is in the form of program evaluation data or measures of children’s progress when comparisons are made before and after intervention without control groups or blinded assessments of outcome. National Research Council, 2001

99 Comprehensive Program Intervention Studies Outcome data related to these models is generally based on small samples, and the small sample size has also prohibited analysis of the role of individual differences within children in the effectiveness of different models (National Research Council, 2001). The components of these models are empirically grounded. This cumulative body of procedural research serves as evidence that early educational interventions do enable young children with ASD to acquire a variety of skills (National Research Council, 2001). However, the quality and quantity of the research that evaluates the overall efficacy of these models has lagged behind the procedural research (National Research Council, 2001). SO...as of to date, we cannot say that ANY of these models is a scientifically effective treatment for autism. Outcome data related to these models is generally based on small samples, and the small sample size has also prohibited analysis of the role of individual differences within children in the effectiveness of different models (National Research Council, 2001). The components of these models are empirically grounded. This cumulative body of procedural research serves as evidence that early educational interventions do enable young children with ASD to acquire a variety of skills (National Research Council, 2001). However, the quality and quantity of the research that evaluates the overall efficacy of these models has lagged behind the procedural research (National Research Council, 2001). SO...as of to date, we cannot say that ANY of these models is a scientifically effective treatment for autism.

100 Guidelines used by the Autism Society of America These guidelines can be given to parents who express a wish to know about different treatments. Will the treatment result in harm to my child? How will failure of the treatment affect my child and family? Has the treatment been validated scientifically? Are there assessment procedures specified? How will the treatment be integrated into my child’s current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored. These guidelines can be given to parents who express a wish to know about different treatments. Will the treatment result in harm to my child? How will failure of the treatment affect my child and family? Has the treatment been validated scientifically? Are there assessment procedures specified? How will the treatment be integrated into my child’s current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.

101 Resources American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4 th ed.). Washington, DC: American Psychiatric Association. Autism Society of America (2008, January 23). Retrieved March 18, 2008 from http://www.autism-society.org. http://www.autism-society.org Ayers, J. (1972). Improving academic scores through sensory integration. Journal of Learning Disabilities, 5, 338-343. Bondy, A.S., & Frost, L.A. (1994). The picture exchange communication system. Focus on Autistic Behavior,9, 1-19. Byrnes, M. (2005). Taking sides: Clashing views on controversial issues in special education (2 nd ed.) Dubuque, IA: McGraw-Hill. Crook, W. (2001). Yeasts and how they make you sick (Rev. ed.) Jackson, Tenn: Professional Books. Dawson, G., & Watling, R. (2000). Interventions to facilitate auditory, visual, and motor integration in autism: A review of the evidence. Journal of Autism and Developmental Disorders 30(5), 415-421. Gerlach, E.K. (2003). Autism Treatment Guide (3 rd ed.). Arlington, TX: Future Horizons, Inc. Greenspan, S.I., & Wieder, S. (1999). A functional developmental approach to autism spectrum disorders. The Association for Persons with Severe Handicaps, 24(3), 147-161. Levy, S.E., & Hyman, S.L. (2002). Alternative/complementary approaches to treatment of children with autism specturm disorders. Infants and Young Children, 14(3), 33-42. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4 th ed.). Washington, DC: American Psychiatric Association. Autism Society of America (2008, January 23). Retrieved March 18, 2008 from http://www.autism-society.org. http://www.autism-society.org Ayers, J. (1972). Improving academic scores through sensory integration. Journal of Learning Disabilities, 5, 338-343. Bondy, A.S., & Frost, L.A. (1994). The picture exchange communication system. Focus on Autistic Behavior,9, 1-19. Byrnes, M. (2005). Taking sides: Clashing views on controversial issues in special education (2 nd ed.) Dubuque, IA: McGraw-Hill. Crook, W. (2001). Yeasts and how they make you sick (Rev. ed.) Jackson, Tenn: Professional Books. Dawson, G., & Watling, R. (2000). Interventions to facilitate auditory, visual, and motor integration in autism: A review of the evidence. Journal of Autism and Developmental Disorders 30(5), 415-421. Gerlach, E.K. (2003). Autism Treatment Guide (3 rd ed.). Arlington, TX: Future Horizons, Inc. Greenspan, S.I., & Wieder, S. (1999). A functional developmental approach to autism spectrum disorders. The Association for Persons with Severe Handicaps, 24(3), 147-161. Levy, S.E., & Hyman, S.L. (2002). Alternative/complementary approaches to treatment of children with autism specturm disorders. Infants and Young Children, 14(3), 33-42.

102 Resources National Institute of Mental Health (2007). Autism spectrum disorders complete publication. [electronic version]. Retrieved March 13, 2008, http://www.nimh.nih.gov/health/publications/autism/complete- publication.shtml. http://www.nimh.nih.gov/health/publications/autism/complete- publication.shtml National Research Council (2001). Educating children with autism. Committee on educational interventions for children with autism. Catherine Lord & James P. McGee, eds. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. Pangborn, J.B., & Baker, S. (2002). Biomedical assessment options for children with autism and related problems: A consensus report of the Defeat Autism Now! (DAN!) scientific effort. San Diego, CA: The Autism Research Institute. Rogers, S.J., Herbison, J.M., Lewis, H.C., Pantone, J., & Reis, J. (1986). An approach for enhancing the symbolic, communicative, and interpersonal functioning of young children with autism or severe emotional handicaps. Journal of Division for Early Childhood, 11, 135-148. Smith, T., Groen, A.D., & Wynn, J.W. (2000). A randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 5(4), 269-285. Umbarger, G.T., III. (2007). State of the evidence regarding complimentary and alternative medical treatments for autism spectrum disorders. Education and Training in Developmental Disabilities, 42(4), 437-447. National Institute of Mental Health (2007). Autism spectrum disorders complete publication. [electronic version]. Retrieved March 13, 2008, http://www.nimh.nih.gov/health/publications/autism/complete- publication.shtml. http://www.nimh.nih.gov/health/publications/autism/complete- publication.shtml National Research Council (2001). Educating children with autism. Committee on educational interventions for children with autism. Catherine Lord & James P. McGee, eds. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. Pangborn, J.B., & Baker, S. (2002). Biomedical assessment options for children with autism and related problems: A consensus report of the Defeat Autism Now! (DAN!) scientific effort. San Diego, CA: The Autism Research Institute. Rogers, S.J., Herbison, J.M., Lewis, H.C., Pantone, J., & Reis, J. (1986). An approach for enhancing the symbolic, communicative, and interpersonal functioning of young children with autism or severe emotional handicaps. Journal of Division for Early Childhood, 11, 135-148. Smith, T., Groen, A.D., & Wynn, J.W. (2000). A randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 5(4), 269-285. Umbarger, G.T., III. (2007). State of the evidence regarding complimentary and alternative medical treatments for autism spectrum disorders. Education and Training in Developmental Disabilities, 42(4), 437-447.

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