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Review Article

Autism: A Generation at Threat

Sabeeha Rehman, MPS, FACHE President and Founding Member of National Autism Association New York Metro Chapter New York, New York Fellow of American College of Healthcare Executives

Abstract A generation of children is at risk as the incidence of autism increases. No consensus exists on the causes of autism or its treatment. A wide range of poten- tial factors such as genetics, vaccines, and environmental toxins is being explored. Some clinicians offer a combination of behavioral, educational, and pharmaceutical treatments, whereas allied health professionals stress diet, bio- medical interventions, and chelation. With a lack of an organized approach to diagnosis and treatment and a lack of trained professionals, children are not receiving timely interventions. Curing autism has to be made a national priori- ty. National programs should conduct research, standardize treatments, and offer public and professional education.

Key words: Autism, autism spectrum disorders, health planning.

Purpose impact the normal development of the brain in the he incidence of autism spectrum disorders areas of social interaction, communication skills, and (ASD) is becoming an epidemic. This phenome - cognitive function. Individuals with ASD typically non, not unique to the United States or Europe, have difficulties in verbal and nonverbal communi - iTs fast emerging as a worldwide problem. This paper cation, social interactions, and leisure or play activi - reviews the gains made and obstacles faced in the ties. Individuals with ASD often suffer from numer - diagnosis and treatment of ASD and proposes a com - ous physical ailments, which may include, in part, prehensive plan to deal with this phenomenon. allergies, asthma, immune system dysfunction, mito - chondrial disease or disorders, epilepsy, digestive Autism Spectrum Disorders disorders, persistent and recurrent infections, feed - Autism spectrum disorders are neurobiological ing disorders, sensory integration dysfunction, developmental disabilities that generally appear sleeping disorders. Autism is diagnosed four times before the age of 3. Autism spectrum disorders more often in boys than in girls. Its prevalence is not affected by race, region, or socioeconomic status. 1 Presented at the Noor Global Knowledge Forum Autism is diagnosed based on clinical observa - Madinah, Saudi Arabia, June 22-24, 2008 tions and testing by professionals using one or more standardized tests. Professionals most likely to diag - Correspondence should be directed to nose autism are neuropsychologists, psychologists, Sabeeha Rehman psychiatrists, developmental pediatricians, and New York, NY 10016 school psychologists. 2 Home: 917-639-3397 Cell: 646-595-7426 Autism is an Epidemic Fax: 917-639-3397 Autism spectrum disorders are the fastest grow - Email: [email protected] ing neurobiological abnormalities worldwide. 3

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According to the Centers for Disease Control and recent genetic research. A 2008 study found genetic Preventions (CDC), the prevalence of ASD in the changes on chromosome 16 in the children and fam - United States 1 in 150. A more recent statistical ilies of children with autism. The incidence of these analysis suggests that in Minnesota as many as 1 in specific genetic abnormalities was much higher in every 81 children has autism. This variance may be these families compared to general population, explained by differences in classification or an though still representing a relatively small, though increased incidence in the last several years. 4 A study significant, number of cases. 10 The possibility of in the United Kingdom estimates that as many as 1 in genetic defect in the mitochondria of the cell as a 38 boys has some form of autism. 5 As many as 1.5 mil - predisposing factor has recently been recognized. 11 lion Americans today are believed to have some form of autism, and this number is on the rise. Based on Environmental Toxins statistics from the U.S. Department of Education and Parent advocacy groups, activists, and some other governmental agencies, autism is growing at a members of the scientific community support the startling rate of 10-17 percent per year. At this rate, theory that environmental triggers and vaccines the American Society of Autism estimates that the may cause some cases of autism. 12 The Autism number of people with autism could reach 4 million Research Institute (ARI) believes environmental fac - in the United States in the next decade. 6 tors — including unprecedented exposure to toxic substances and overvaccination of infants and young Theories of Causation children — are the key factors triggering this devas - From the early 1950s and into the 1970s, it was tating epidemic. According to the National Autism widely believed that the mothers of children with Association (NAA), a parent advocacy group, “Autism autism neglected their children and were not loving is no longer considered a heritable, genetic disorder. enough, which in turn caused the children to regress It is an environmentally triggered, therefore pre - into a world of their own. These mothers were ventable and treatable disease. Environmental labeled “refrigerator mothers.” Thanks to Dr. research holds the key to finding the cause and Bernard Rimland, himself the parent of a child with developing effective treatments for those affected.” 9 autism, this theory has been discredited. 7,8 A recent study revealed that autism spectrum disor - However, more than 50 years later, there still is ders may result from a combination of genetic/bio - no consensus on the causes of autism. The etiological chemical susceptibilities in the form of a reduced theories range from genetics, vaccines, environmen - ability to excrete mercury and/or increased environ - tal toxins, immune deficiencies, and more. Many mental exposure to mercury at key developmental hypothesize that it is a combination of factors, for times. 13 example, a genetic susceptibility to autism triggered Autism may begin when early environmental, by an environmental insult. infectious or autoimmune insults trigger an immune response that increases oxidative stress on the Genetics brain. 14 Conceptualized in another way, the autism There are many in the scientific community who spectrum disorders are a combination of neurologic, believe that there is a strong genetic component or immune system and gastrointestinal reactions and predisposition to ASD. It is important to note that in expressions of the impact of environmental toxins the past 10 years of looking for the “autism on genetically susceptible infants and children. gene,”none has been found. This has led many Studies have associated autism and/or other neu - researchers to believe that there has to be a trigger rodevelopmental disorders with exposure to mercu - to turn on the gene and hence cause autism. ry, lead, alcohol, polychlorinated biphenyls (PCBs), According to officials at the U.S. National Institutes polybrominated diphenyl ethers (PBDEs), man - of Health (NIH), while there is most likely a genetic ganese, arsenic, solvents, polycyclic aromatic hydro - predisposition, there must also be an environmental carbons (PAHs), pesticides, brominated flame retar - component to autism. The rapid rise in the rate of dants, plastics and nicotine/environmental smoke. autism over the last 15 years cannot be attributed Phthalates, which are known to interfere with hor - solely to genetics. 9 However, there are some clues in mone (steroids) synthesis, are used in products such

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as soft vinyl plastic toys, shampoos, hairsprays, nail While the debate on causes of autism rages polish, waxed cheese wraps, perfumes and deodor - between concerned parents, the medical communi - ants, new cars, and pharmaceuticals. Styrofoam, a ty, CDC, the U.S. Food and Drug Administration polymer of styrene, is neurotoxic, and Teflon, classi - (FDA), the pharmaceutical industry and scientists, fied as perfluorooctanoic acid (PFOA), is a likely car - “cure” is becoming an elusive goal. cinogen and can cause immune system damage. 15 Tens of thousands of babies per year in the United Treating Autism States are born with neurodevelopmental disorders There is no consensus on the treatment of ASD. due to fetal exposure to mercury. 16 Mainstream medical practitioners stress a combina - tion of behavioral therapies and pharmaceutical Vaccines treatments. Allied professionals stress special A link between autism and vaccines has not been dietary regimens, biomedical intervention, and firmly proved or disproved, though there is mount - chelation therapies. ing evidence of a connection. In March 2008, a panel Pediatricians in mainstream medicine advocate of medical evaluators concluded that a young educational interventions such as application of American girl, Hannah Poling, had been injured by applied behavior analysis (ABA), application of vaccines. 17 The federal government vaccine court, developmental models, structured teaching, social with no formal hearing, conceded that the nine vac - skills instruction, speech therapy, occupational ther - cines Hannah received significantly aggravated an apy and sensory integration therapy combined with underlying medical condition, mitochondrial dys - medical management for conditions associated with function, a condition of impaired cellular function - ASD. 26 ing. This predisposed Hannah “to deficits in cellular The Autism Research Institute (ARI) registry lists energy metabolism and manifested as a regressive physicians and other medical practitioners who pro - encephalopathy with features of autism spectrum vide biomedically based treatment for children and disorder”. 18 Mercury from the thimerosal in vaccines adults with autism. 27 These practitioners are referred has been linked to autism and other neurodevelop - to as Defeat Autism Now! practitioners. The Defeat mental disorders. 19 Analysis of a previously unexam - Autism Now! philosophy involves treating the ined database maintained by the CDC strongly sug - underlying causes of the symptoms of autism, based gests that exposure to thimerosal through hepatitis on medical testing, scientific research, and clinical B vaccines is associated with neurodevelopmental experience, with an emphasis on nutritional inter - disorders, including autism. 20,21 Thimerosal is still ventions. Defeat Autism Now! treatments are child- used in vaccines in third world countries and in flu specific and may include determining and treating vaccines and in trace amounts in other vaccines in food allergies and sensitivities and improving diet the United States. 22 Moreover, for several years after (through the use of diets such as the gluten-free the 1999 recommendation that thimerosal be casein-free diet, specific carbohydrate diet, and removed from childhood vaccines, some mercury- other dietary interventions), vitamin/mineral sup - containing vials remained available on the shelves plements such as methylcobalamin (MB12) injec - and were utilized until they expired. 23 While some tions, high-dose vitamin B6 and magnesium, essen - studies have concluded no link between vaccines and tial fatty acids and amino acids, gut treatments such autism, many of these studies have been criticized. as antifungals, parasite treatments, probiotics and For example, in September 2008, a study published digestive enzymes, melatonin to address sleep by Columbia University and supported by the CDC issues, thyroid treatment (many children with ASD and NIH, showed no link between the measles virus exhibit hypothyroidism), treatments to improve the vaccine and autism. 24 Many autism associations and sulfation pathways, treating viral issues, glutathione, advocates for safe vaccines have challenged the chelation, and treating systemic inflammation and results of this study on the basis of the flaws in the immune system regulation issues. 28 design of the study, its assumptions, and its small Biomedical treatment is suggested as a supple - sample size. They are advocating for research to be ment to the therapies recommended by more main - done on vaccinated vs. nonvaccinated children. 25 stream practitioners, not a replacement. Each child’s

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comprehensive program of biomedical treatments, Autism Act of 2006 allocated approximately $950 therapies, and behavioral and educational interven - million in spending on autism over 5 years, with only tions is unique and determined by a child’s individ - $90 million devoted to surveillance and research. ual needs. 28 In addition, families are using other ther - The bill did not include the provisions that would apies such as Verbal Behavior Analysis (VBA), have specified funding for investigating possible Developmental, Individual-Difference, Relationship- environmental causes. It appropriated $210 million Based, or “DIR®” and Treatment and Education of for education, early detection, and intervention, Autistic and Related Communication-handicapped over a 5-year period. 34 However, federal funding for Children (TEACCH). 29-30 ASD has not increased to the levels authorized by the Act and there have been recent attempts to remove Funding for Autism funding for important research from the Act. 35-6 In the United States, autism research has had President Barack Obama, during his 2008 presiden - limited funding. In 2005 the NIH dedicated only 0.3 tial campaign, pledged to increase federal ASD fund - percent of its budget to autism. Autism is still very ing for research, treatment, screenings, public far behind in private funding. Leukemia affects 1 in awareness, and support services to $1 billion annual - every 25,000 and has $300 million in private funding. ly by the end of his first term in office. Additionally, Pediatric AIDS affects 1 in 8000 and has $394 million President Obama committed to bringing autism in private funding. Autism affects 1 in 150 and has insurance reform to the entire nation saying his only $15 million in private funding. 31 The funding for administration “will mandate insurance coverage of education of children with ASD is even less. autism treatment and will also continue to work Moreover, in most states, health insurance reim - with parents, physicians, providers, researchers, and bursement for the treatment of autism is extremely schools to create opportunities and effective solu - limited or nonexistent. Generally, insurance plans tions for people with ASD.” While still a U.S. Senator, classify autism as a psychiatric disorder. Whether it President Obama drafted legislation entitled “Autism is for treatment of a physiological condition or for a Treatment Acceleration Act of 2008”, which includes recognized behavioral intervention, insurers use the broad-based federal autism insurance reform. 37 autism “mental health” exclusion to avoid paying claims for services such as ABA and other interven - Impact on Families tional therapies such as speech, occupational, and With an alarming increase in new cases of autism physical therapy, as well as diagnostic tests. 32 spectrum disorders, and with a dearth of appropri - Pressured by autism advocacy groups, some states ately trained diagnosticians, caregivers, therapists, now mandate some coverage for treatments such as and educators, the demand for care and treatment ABA. Some states prohibit discrimination in health now far exceeds the supply of qualified providers. insurance coverage for autism. Only 17 states have When families suspect their child may have insurance laws relating to autism coverage autism, they sometimes wait for over 6 months to (California, Georgia, Illinois, Indiana, Iowa, Kansas, even see a professional to establish a diagnosis. Kentucky, Louisiana, Maine, Maryland, Montana, Learning that their child has autism is devastating to New Hampshire, New Jersey, New York, Tennessee, the parents. This already overwhelming experience and Virginia). Of these, 10 require coverage for is compounded when families have to wait months autism through their laws mandating coverage for to obtain appropriate services to help their children, mental illness (California, Illinois, Iowa, Kansas, who benefit greatly from the earliest and most Louisiana, Maine, Montana, New Hampshire, New intensive intervention possible. Jersey, and Virginia). The other six states have spe - Children under 3 often face a long wait for evalu - cific laws regarding insurance coverage for autism ation by their local early intervention program and (Georgia, Indiana, Kentucky, Maryland, New York, then another wait to obtain recommended services. and Tennessee).” Most recently, Oregon gained full Similarly, parents of school-aged children often find parity this year. 33 that obtaining an appropriate classroom placement The federal government also is taking some and therapeutic services for their child with ASD is action with respect to autism. The Combating difficult, and in some areas, virtually impossible. A

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school district should establish an individualized quickly, the demographics of people with autism will education plan (IEP) for a child. Unfortunately, the shift. Families are finding a lack of resources to take scope and degree of intervention offered by the dis - care of adults with autism. Neither government trict often is far below what is appropriate for the agencies nor insurance companies are prepared. child. A child for whom 40 hours of ABA therapy a So what are parents — frustrated by the waiting week is a appropriate may end up receiving no more and the lack of services and concerned about their than 10 hours and sometimes none at all. Frustrated, family’s future and the future of their child with and seeing their child making no progress — or even autism — to do? They do what we all do when look - worse, watching their child regress — parents reach ing for answers. They turn to the internet. They out to private sources to supplement the school serv - Google “autism”. Hundreds and thousands of links ices, only to be confronted with astronomical costs show up. The list of treatments offered is endless. and long waiting lists for appropriate private pro - How do they navigate this vast amount of informa - grams. Assuming a family can find an appropriate tion? How do they assess what is right for their private placement for their child, the parents have child? To say that parents are overwhelmed is an to pay the cost for private schooling (some programs understatement, and they often receive little sup - cost approximately $100,000 a year) and then seek port in navigating this information. reimbursement from their school district, one year In the absence of scientific research, mainstream at a time. These costs are straining families both medicine has been cautious in its approach to alter - emotionally and financially. native treatments. Families find that physicians The financial burden and emotional stress of want parents to wait for lengthy scientific studies autism is threatening the family unit. Not only are that prove or disprove any given therapy but fami - marriages threatened, there can be household ten - lies hear the clock ticking. Far too many families sion as parents try to balance the needs of the child have been told by their child’s physician that it is with autism and those of the other children in the futile to try to treat autism, offering little in the way family. The stress that siblings encounter also can - of intervention or hope. In the absence of standard - not be minimized. Younger siblings find themselves ized treatment, families feel abandoned and lost and in a reverse role of big brother or big sister; siblings many families seek out alternate treatments. Some may compete for parents’ attention, or find them - families have had incredible results with these treat - selves in a socially awkward situation, having to ments, and there are many reputable providers. explain their sibling’s unusual behavior to their Unfortunately, many other families have fallen prey friends. If there is only one sibling, he or she may feel to charlatans promising miracle cures and have at a disadvantage for not having a playmate in the exhausted their resources in the pursuit of a cure. house or feel pressured when expected to make room and allowances for the sibling with autism. As While A Cure Is Being Sought siblings get older they may be concerned about To draw attention to this circumstance, parents future care when the parents no longer can care for in the United States have engaged in advocacy, the sibling with autism. 38 awareness, and activism. Parent-led initiatives have Children with autism are at risk of hurting them - gained momentum. Parents are the drivers for advo - selves. The leading causes for concern are children cacy, activism, support groups, lobbying, alternative and adults who run away or wander from parents medicine, and critical review of studies being con - and care providers (known as elopement). ducted. Celebrities such as Oprah Winfrey and Jenny Wandering children and adults with autism are often McCarthy have been instrumental in raising aware - attracted to water sources, and drowning is a leading ness. Affected families and concerned citizens have cause of death for children and adults with autism. 39 taken the lead in forming national associations with Some children with autism also engage in self-injuri - mandates that include research, philanthropy, ous behavior — such as head-banging — and must be awareness and education, support, networking, monitored carefully to avoid serious harm. advocacy and media engagement. Some of these Many children on the autism spectrum are now associations have established local chapters, allow - entering their teens. Some are adults, and very ing them to respond on many levels. Many also hold

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national conferences that have become the forum Table 1. National associations addressing autism and for bringing hope and knowledge to families (Table organizations providing information and resources. 1). It was through the drive led by affected families National Autism Association that the United Nations declared April 2, 2008, World nationalautismassociation.org Autism Awareness Day. World Autism Awareness Autism Society of America Day was also observed on April 2, 2009. autism-society.org Responding to the special needs of affected fam - Autism Speaks ilies, the legal profession has developed a niche in autismspeaks.org advocating for the special education rights of chil - Autism United dren with autism. All this has not escaped the notice autismunited.org of the media, and major networks have aired special Talk About Curing Autism programs for autism awareness. Mothers, therapists, talkaboutcuringautism.org nutritionists, and scientists are publishing books on Safe Minds parental education, diet, play therapy, and biomed - safeminds.org ical intervention. Periodicals and journals can now Autism One be seen on newsstands. A new market has emerged autismone.org to provide tools and toys to aid speech, play, sensory Generation Rescue integration, and social skills. Documentaries, videos, generationrescue.org blogs, listserves, and podcasts have become the Unlocking Autism medium for communication and dialogue. unlockingautism.org Philanthropists are raising funds through special Autism Research Institute drives. Legislators are responding, and there is a autism.com movement to increase the funding for research and The Sibling Support Project special education across the nation. As a conse - siblingsupport.org quence, autism is now being recognized as an epi - Autism Risk & Safety Management demic. autismriskmanagement.com The vaccine theory remains unresolved and con - troversial. Advocates and activists are making the case for “safe vaccines” which do not contain mercu - the community at large respond? The goals of the ry, aluminum, and other potentially harmful ingre - plan should aim at research directed towards pre - dients. They also call for individually-customized vention and cure, treatment, and education. vaccination schedules, not a “one-size-fits-all” Pediatricians should screen infants and toddlers schedule. In the face of demands to vaccinate their for autism, with established screening guidelines children on a one-size-fits-all schedule, families and such CHAT, M-CHAT, CAST. 1 Laboratory facilities and advocates are pushing for the option of religious diagnostic capability for testing mercury and other exemption or conscientious/philosophical objection toxicity levels, yeast infections, leaky gut syndrome, to vaccinating their children. Some states have food allergies and other conditions would have to be passed legislation to permit these exemptions, which in place. has raised concerns in the medical and pharmaceuti - Mechanisms to license and certify practitioners cal communities, as well as governmental agencies. (therapists, clinicians, special education teachers, nutritionists, etc.) should be established to prevent Developing a National Action Plan opportunism. Biomedical treatments within practice A national action plan must confront some key guidelines and in accordance with the type of disor - issues. How do parents cope with this phenomenon? der should be approved. Private and public health How does the medical community respond? What insurance underwriting and coverage policies are the health policy considerations? What are the should facilitate access to approved screening and legal issues? What is the role of government, philan - treatment providers. thropists, scientists, educators, advocates? How does Conventional medicine currently supports early

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intervention using combinations of applied behavior disciplinary forum (clinician, therapists) with the analysis (ABA)/verbal behavior analysis (VBA), floor - parent at regularly scheduled intervals. time/DIR, relationship development intervention It is also necessary to adapt school systems to (RDI), OT, PT, ST, sensory integration therapy and meet the needs of children with ASD. Schools should social skills therapy. 26 Modalities of biomedical treat - be equipped to recognize symptoms of autism and ment should be made available on a case-by-case conduct the appropriate evaluation if a child has not basis, taking into consideration the type of disorder. been evaluated before entering school or if symp - These modalities include chelation therapy (removal toms of autism manifest at a later age. Students of toxic metals); vitamin and mineral supplements, requiring intervention should be referred for special such as methyl-B12 injections, high-dose vitamin B6 education within the school system. Special educa - and magnesium, and the “mitochondrial cocktail” of tion teachers and psychologists, trained and certi - supplements to address mitochondrial issues based fied in autism, should staff these classes. ABA and on a child’s needs; melatonin for sleep issues; thyroid other educational models, occupational, speech, treatments; sulfation; glutathione; immune system physical therapy, and sensory integration should be regulation; hyperbaric oxygen therapy (HBOT); integrated into the school curriculum, and a pro - antiviral treatments; and treatments for systemic gram should be developed based on a child’s partic - inflammation. Dietary intervention, as warranted, ular needs. Goal setting and evaluation should be may include special diets such as gluten-free/casein- conducted at pre-determined intervals. free diet (GFCF), the Feingold diet, specific carbohy - The school-based system would be extended into drate diet (SCD), Body Ecology Diet (BED) and others; the home for off-hour educational therapy and relat - food allergy and sensitivity management including ed services such as occupational therapy, speech rotation diets; essential fatty acids; and amino acids. therapy, sensory integration therapy, and social Gut treatments, including the use of antifungals, skills therapy. probiotics, and digestive enzymes, may also be To support the aforementioned diagnostic and used. 28,40 The protocols for biomedical treatment that treatment programs, a cadre of qualified profession - can be utilized may include the Defeat Autism Now! als should be cultivated, based on the expected protocol, the Cutler protocol or others. 41 demand for services. An educational program for Research should cover topics such as the rela - therapists (for example, ABA, PT, OT, Speech) should tionship of autism and environmental toxins, be established to create and maintain a critical mass thimerosal in vaccines, genetic and metabolic fac - of professionals. Specialty training programs for cli - tors, gastrointestinal diseases, autoimmune disor - nicians should be established, either independently ders, and mitochondrial disease and dysfunction. or in collaboration with existing universities. Research should also focus on clinical trials to ascer - It is also important to educate parents on recog - tain effective treatments for mercury poisoning and nizing the symptoms of autism, knowing when, positive outcomes of dietary intervention, biomed - where, and how to access care, and on caring for ical treatments and behavioral therapy. It is impor - children with autism. Regularly scheduled work - tant disseminate results of this research to parents shops, seminars, or home-based education are all and professionals around the world. alternatives to be pursued. Parents should be trained A registry should track incidence, prevalence, on managing the symptoms of autism (behavior and and outcomes, and serve as a resource for program gastrointestinal issues), play therapy, diet, safety, planning. sibling rivalry, as well as extending the components In light of the multidisciplinary approach neces - of the child’s educational and therapeutic program sary to deal with ASD, specialized centers should be into the family’s everyday life and activities. Parents established to do intake, conduct evaluation, estab - should be provided with tools such as flash cards and lish diagnosis, determine treatment, and, in collabo - play equipment to facilitate successful integration of ration with the parent and caregivers, establish the the program into their home life. Parental education plan of care. The plan would integrate conventional will empower the parents to help their child, know - and biomedical treatment, education, and therapy. ing that they are supported in doing so. The patient’s progress would be evaluated in a multi- Recreational facilities, which account for autistic

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children’s sensory and motor skill limitations, thus with autism in an emergency. Families should regis - providing them a safe space to play, should be made ter their child with law enforcement agencies. available. Parent support groups and resource cen - Families should enhance home security systems to ters can provide families a forum for networking, prevent elopement. Families should inform neigh - sharing experiences, learning from one another, bors about their child’s autism to maximize the building resources, and creating an extended family. child’s safety in the event of elopement. Autism Sibling aupport groups can provide a setting for peer emergency contact handouts should be developed. support groups for siblings of children with autism. Autistic children should have identification tags. The goal of these groups would be to provide infor - Vehicles with children with autism on board should mation opportunities for brothers and sisters, and have a notice. Finally, swimming classes for children increase parents’ and providers’ understanding of with autism should be regularly held. sibling issues. Workshops, listservs, and web sites would be established for communication and sharing Conclusions of information. The action plan proposed is ambitious in its Counseling services should account for ASDs in scope. It involves every segment of society. This marriage counseling, parental counseling, child builds synergy and yields the most promising behavior issues, conditions arising from autistic results. This initiative should be made a national pri - care’s isolation, grief, and concerns over the future, ority and be undertaken with speed. Time is of the financial planning, sibling issues such as explaining essence. A future generation is at stake. autism, relationship building, handling their stress from embarrassment, frustration, victimization, spe - Acknowledgements cial demands, and grandparent counseling, to define Kim Mack Rosenberg, Esq., is the officer and their role in easing the burden of their children as treasurer of the National Autism Association, New parents. York Metro Chapter. I thank her for reviewing and To facilitate access, directories of professionals editing the manuscript. Her attention to detail, her and allied health professionals that enable the par - breadth of knowledge and her personal experiences ents to access providers, schools, and community in combating autism enhanced the manuscript’s programs should be created and distributed widely. readability and its validity. Steps should be taken to ensure that the market Khalid Rehman, MD, my husband, for educating makes available items such as casein-free, gluten- me on the clinical aspects of autism, and facilitating free, organic foods, educational tools such as flash the clinical research for me. cards, games and toys that lend themselves to thera - Saadia Rehman, DO, my daughter-in-law, and py and sensory and motor issues and educational mother of a child on the autism spectrum, for material for families, caregivers and educators. reviewing the manuscript and providing her insight - Media awareness campaigns should be conduct - ful and thoughtful comments. ed, geared towards sensitizing the public as well as educating families on recognizing the signs and References symptoms of autism. Role models with success sto - 1. Johnson CP, Myers SM, American Academy of ries should be publicized through the media, support Pediatrics Council on Children with Disabilities. groups, associations, with the purpose of inspiring Identification and evaluation of children with autism hope. Programs such as Mothers-helping-Mothers spectrum disorders. Pediatrics. 2007;120:1162-1182. and Rescue Angels should be institutionalized. 2. National Autism Association. Diagnosis. Rosters of volunteer parents should be maintained http://www.nationalautismassociation.org/diagno - and matched with families looking for guidance. sis.php. Accessed 2008 Jan 14. To improve safety, neighborhood watch pro - 3. Grossman, L, Barrozo P. The next global human grams for assuring the safety of children should be rights issue: why the plight of individuals with developed. Law enforcement agencies should be autism spectrum disorders requires a global call to educated on how children with autism behave and action. Autism Advocate. 2007;49:8-12. Available react, enabling them to effectively manage a child from http://www.autis-society.org/site/DocServer

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Research Program [web site on Internet]. Available org/caa. [Accessed 2009 Mar 14]. from http://autism.asu.edu/Additional/Summary 35. Barack Obama and Joe Biden: supporting biomed07.pdf. [Updated 2007 Apr 7; accessed 2009 Americans with autism spectrum disorders. Mar 14]. BarackObama.com [web site on the Internet]. 29. AutismWeb [web site on Internet]. A parents’ Available from http://www.barackobama.com/pdf/ guide to autism and pervasive developmental disor - AutismSpectrumDisorders.pdf. [Accessed 2009 Mar der (PDD). Available from 14]. http://www.autismweb.com/floortime.htm. 36. Autism Speaks withdraws support for strategic 30. TEACH Autism Program. A Division of the plan for autism research, decries unexpected change University of North Carolina Department of in final approval process. Autism Speaks. 2009 Jan 15. Psychicatry [web site on the Internet]. Available Available from http://www.autismspeaks.org/ from http://www.teacch.com/. [Accessed 2009 Mar press/autism_speaks_withdraws_support_for_strat 14]. egic_plan.php. [Accessed 2009 Mar 14]. 31. McCarthy J. Louder than words: a mother’s jour - 37. Obama administration publishes autism agenda ney in healing autism. New York: Dutton; 2007. on Whitehouse.gov. Autism Speaks. Available from 32. http://www.a-champ.org/insurance_coverage. http://www.autismspeaks.org/inthenews/obama_a html. Parents fight for autism insurance coverage. utism_agenda_online.php. [Accessed 2009 Mar 14]. National Public Radio. 2007 Aug 16. Available from 38. National Autism Association. http://www.npr.org/templates/story/story.php?st http://www.nationalautismassociation.org/press06 oryId=12829221. [Accessed 2009 Mar 14]. Kunkle F. 1207.php. Accessed Jan.14, 2008 Seeking help for autistic children. The Washington 39. Autism safety toolkit. National Autism Post. 2009 Feb 2; Sect B:1. Association. Available from http://www.nation - 33. Kaminski JL. Insurance coverage for autism. alautismassociation.org/safetytoolkit.php. Connecticut General Assembly. Office of Legislative [Accessed 2008 Mar 14]. Research. 2006. Report Number 793. Available from 40. Jepson B, Johnson J. Changing the course of http://www.cga.ct.gov/2006/rpt/2006-R-0793.htm. autism: a scientific approach for parents and physi - [Updated 2006 Dec 27]. cians. Boulder, CO: Sentient Publications; 2007. 34. Combating Autism Act (CAA) appropriations and 41. Generation Rescue. Biomedical treatments for IACC strategic plan for autism research. Autism autism. Available from http://www.generationres - Speaks. Available from http://www.AutismVotes. cue.org/biomedical.html. [Accessed 2008 Jan 15].

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