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About Publications and Resources There is a wealth of information about autism in the media, in research publications and on the Internet. On this web page, we offer our readers research-based and reliable information on current research, proven therapies, and public policy related to autism. We also provide links to educational videos and to advocates in the autism community who might offer additional information on local programs and activities. Also, if you have responded to our Education Survey on the Autism CEC home page, you may also notice that we included related articles on topics you want to know more about. Thank you for your input.
CNNH Articles Classroom Strategies for Students with Autistic Spectrum Disorders. CNNH Staff offer the "new look" of classroom applications of Applied Behavior Analysis (ABA). CNNH's ABA experts emphasize the importance of an individualized approach to assessing and developing a behavior plan that is unique to each child's needs. Furthermore, functions of behavior, tips for teachers and practical examples are offered to help teachers understand what constitutes normal and aberrant behavior, and its causes, and methods for effectively administering an ABA plan in the classroom. With proper training, teachers, parents and caregivers can consistently implement ABA strategies in any setting. Click here for the original article Pelliciari N, O'Donnell L, Wagner P, Alberts L, Niemann G: Classroom strategies for students with Autistic Spectrum Disorder. NJEA Review Jan 2010
Autism 101: What are the possible causes, features and treatments of this disorder? Dr. Mark Mintz and Dr. Daniel LeGoff explain the warning signs of Autism Spectrum Disorders (ASD) for childhood educators in this New Jersey Education Association (NJEA) article. Additional data will be presented by Dr. Mintz at the NJEA Conference in November. Click here for the originl article Mintz M, LeGoff D: Autism 101: What are the possible causes, features and treatments of this disorder? NJEA Review 2009; 82(9):16-18.
Choosing the appropriate intervention for ASD: A comprehensive analysis of educational, behavioral and medical approaches Each child with autism spectrum disorder (ASD) is different, requiring a thorough battery of assessments to formulate the most appropriate treatment approach or combination of approaches. In addition to evaluating a child's cognitive, social-communication and behavioral abilities, a thorough medical and neurological evaluation is necessary to uncover any underlying medical issues. In this article, Dr. Mintz and his colleagues review the various researched treatment approaches available to assist individuals with ASD acquire skills and reduce maladaptive behaviors. He also calls for further research to uncover the pathophysiology of autism spectrum disorder (ASD) in order for even more effective treatment approaches to be formulated. Click here for the Book Chapter Mintz M, Allesandri M, Curatolo P. Treatment Approaches for Autistic Spectrum Disorders. In: Tuchman R, Rapin I, eds. Autism: A Neurological Disorder of Early Brain Development, International Child Neurology Association. London: Mac Keith Press, 2006:281-307.
Diagnosis Functional impact of global rare copy number variation in autism spectrum disorders Results of the Phase II Autism Genome Project identified over 250 genes with copy number variations (CNV is, for example, DNA insertions/deletions). Many of these genes are involved with cellular proliferation, projection and motility and/or cell-to-cell signaling/synaptic formation, thus adding further molecular information/confirmation concerning the "disconnectivity" theories for the neurological basis for (some) autism spectrum disorders (ASD). CNVs were 19% more common in autism than controls and 69% more common when interfering with genes implicated with autism. Individual CNVs effect only 1% of subjects, and thus are rare, but with relatively high penetrance (i.e. the possession of a gene will likely lead to an ASD); although there were others with low penetrance, and thus, require other unknown genetic (such as additional "risk" genes) or environmental factors to cause an ASD, and thus, may never cause an ASD. So, as expected, the genetics of autism will be quite complex and broad, with many different and unique genotypes (i.e. genes) leading to similar phenotypes (i.e. the expression of genes, or in this case the final common behavioral/developmental pathway known as ASD). The researchers found different and disparate gene/CNV variations can effect the same gene(s), and that many CNVs were de novo although a proportion were inherited. Click here for the original article abstract.
Feeding Symptoms, Dietary Patterns, and Growth in Young Children With Autism Spectrum Disorders Interesting finding of slower feeding and less varied diet in infants who ultimately are diagnosed with autism, yet no difference in overall growth pattern. This study researched the feeding patterns and habits of children with Autism Spectrum Disorders (ASD) compared to children without ASD at 6, 15, 24, 38 and 54 months. Click here for the original article.
Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report The diagnosis of Autism often times leads to the discovery of other medical disorders. Gastrointestinal disorders are commonly reported in individuals with ASDs, although the best treatment is still unclear, perhaps due to communication difficulties between doctor and patient. A panel established to generate evidenced-based recommendations for diagnosing and managing gastrointestinal issues has gathered inconclusive data to date. However, they expressed that individuals with ASD deserve the same standard of care for gastrointestinal disorders as patients without ASD and that a combination of behavioral and medical care is appropriate while further research is being conducted. Click here for the original article.
Genetics testing for siblings According to Arisktest website, “the ARISk Familial Autism Panel is comprised of 8 genes which have been shown to be associated with the development of autism. The test is designed to allow for the early assessment of the likelihood of autism in children who are at a higher risk of being autistic.” Although this is an interesting development in the search for biomarkers for the early identification of autism, the new test presents concerns:
Microstructural connectivity of the arcuate fasciculus in adolescents with high-functioning autism. This interesting neuroimaging study adds to the growing body of research pointing to abnormalities in brain networking "connectivity" in those with autism spectrum disorders. Click here for the original article.
Genetic causes of syndromic and non-syndromic autism This article describes autism spectrum disorders (ASDs) as “a group of developmental disorders with a strong genetic basis. During the past few years, genetic research in ASDs has been successful in identifying several vulnerability loci and a few cytogenetic abnormalities or single-base mutations implicated in the causation of autism.”
Clinical Genetic Testing for Patients With Autism Spectrum Disorders From Pediatrics, a report from the Autism Consortium Clinical Genetics/DNA Diagnostics Collaboration, concludes that Chromosomal Microarray analysis should be a standard initial test in the diagnostic work-up of Autism Spectrum Disorders. They only evaluated karyotyping, Fragile X and microarray. Further studies are needed looking at an expanded array of genetic markers that have been associated with ASDs.
Mothers' Spanking of 3-Year-Old Children and Subsequent Risk of Children's Aggressive Behavior This recent report found that even mild forms of corporal punishment, such as spanking, in three-year-old children caused increased aggressiveness at five years of age. This study could not establish a causal relationship between spanking and childhood aggression, but is consistent with previous studies looking at corporal punishment, and thus, is consistent with American Academy of Pediatrics recommendations to utilize non-physical behavioral methods for discipline.
Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression A recent study in the Journal of Child Neurology found that fever in children with underlying mitochondrial disorders can be a risk factor for autistic regression. The authors found that fever can be an independent risk factor, but might also be related to other associated features that can aggravate mitochondrial disorders, such as dehydration, hypoglycemia, decreases in substrates for oxidative phosphorylation and other metabolic abnormalities such as fatty acid oxidation dysfunction. Additionally, the potential for mitochondrial dysfunction has often been an argument for avoiding vaccinations. These authors stressed that the full vaccination schedule according to American Academy of Pediatrics' guidelines should be used even if there is a known underlying mitochondrial disorder, but with vigilance towards fever control and hydration. The issue is that there might not be a known mitochondrial disorder until after there is a regression associated with a vaccination.
Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report This article provides that there is insufficient evidence to support or refute the use of special diets in autism. They suggest there may be subgroups that benefit from this approach, but that further study is needed. Results like these will continue as long as the heterogenous group of autism, i.e. a group of children defined by a set of behavior patterns, rather than underlying biologies, are studied as a population group.
A Powerful Identity, a Vanishing Diagnosis Will Asperger Syndrome disappear as a diagnosis? This article indicates that the new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) might combine all of the "other" autism diagnoses (i.e., Asperger Disorder, PDD-NOS, High Functioning Autism, etc) into one general diagnostic category labeled “Autism Spectrum Disorders” since there are not clear or distinct biomarkers for these behaviorally defined diagnoses. The article points out the need to provide biologically defined diagnoses, and thus, validates the neurological approach at CNNH: utilizing a clinical/biological profile based upon neuropsychological, neurophysiological, genetic, metabolic and other medical/neurological criteria. Unfortunately, the DSM-V might actually create added confusion by creating an even more heterogenous group of individuals who are biologically diverse, which will create uncertainty in areas of research (i.e. trying to define subject cohorts) and in clinical care. Comments from Dr. Mintz:
It is bizarre that the committee has taken such an unscientific approach to a complicated neurobiological disorder. It will not make clinical sense to consider the patient with high intellectual functioning, somewhat fixated interests secondary to a high intellect and curiosity, stereotyped behaviors or rigid routines, and social communication deficits (i.e. what might be labeled Asperger Disorder under the present DSM-IV) and consider that equivalent to a child who has regressed from a state of simple verbal communication to no verbal communication, cognitive impairment with cognitive impairment with low intellectual functioning, poor adaptive functioning, and severe neurobehavioral patterns. One of the most debilitating problems with Autism are the language deficits, and yet in the DSM-V this is barely addressed, but rather stating that "language delays" are common in other disorders and not unique to Autism. Although partially true, Allen, Rapin, Tuchman and others have provided evidence that the type of language disorder can be defined as a verbal auditory agnosia or phonologic-syntactic disorder, rather than the more common expressive language delays, and there can be neurologic correlates to these subtypes [Tuchman et al; Pediatrics 1991;88:1211-1218; Rapin, In: Autism: A Neurobiological Disorder of Early Brain Development, Mac Keith Press, 2006.] Basically, the DSM-V will be that "Static" encephalopathies and "Progressive" encephalopathies are biologically equivalent, which is an absurdity. At least on the high functioning end, it also blurs demarcation between consideration of abnormality versus neurodiversity. Again, the approach to "lumping" the language deficits of Autism as a single developmental anomaly is a disservice.
Microstructural connectivity of the arcuate fasciculus in adolescents with high-functioning autism. Interesting neuroimaging study adding to the growing body of research pointing to abnormalities in brain networking "connectivity" in those with autism spectrum disorders.
New Test for ADHD: The Quotient™ ADHD System…Available at CNNH! (posted 9/1/09) This state of the art computerized testing system for ADHD assists clinicians in accurately diagnosing this neurological disorder in children and adults by measuring an individual’s inability to control abnormal levels of motor activity, sustain attention, and suppress impulsive responses. A diagnosis is made by objectively monitoring these three core symptoms through tracking subtle head and body movements with two high-resolution infrared cameras while the patient responds to a monotonous, but demanding, performance task. In 15 to 20 minutes, this non-invasive test offers clinicians objective measures for a patients’ neurological control functions and the ability to offer an accurate treatment plan. To learn more about the Quotient™ or to schedule a testing appointment, for children or adults, contact CNNH at 856-346-0005.
Click here for Channel 6 ABC News Healthcheck video.
Amygdala Enlarged in Young Autistic Children This article reviews a longitudinal study of amygdala volume and joint attention in 2- to 4-year-old children with autism. (Mosconi M, et al Arch Gen Psych 2009; 66: 509-16; article written by John Gever, Senior Editor, MedPage Today, reviewed by Zalman S. Agus, MD). Click here for medpage summary
Autism, Epilepsy and Seizures: How to Recognize the Signs and Basic First Aid When You Do Learn the facts about each of these disorders and how to react to an episode in this quick guide, developed by the Fiddle Foundation.
Treatment Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial A parent-directed/mediated communication-focused intervention ("PACT") was compared to "treatment as usual" at three UK centers (or should I say centres) and 152 preschoolers. Somewhat surprisingly, the results did not find a positive impact for altering language or social communication core deficits based on results of the ADOS-G, although not as surprising there was a positive effect on parent-child dyadic social communication. One fault of the study may be the use of the ADOS-G: a diagnostic tool not necessarily designed to measure changes in symptoms over time. Of course, the over-riding confounder in this and other autism studies continues to be the use of cohorts recruited on the basis of a DSM-IV diagnosis of autism, which creates a heterogenous cohort of children with disparate underlying neurobiologies and genetics. Click here for the original article.
Suicide and self-injury among children and youth with chronic health conditions This study indicates that 20% of children and adolescents with chronic physical or mental health conditions are at increased risk for self-harm, suicidal thoughts and attempted suicide compared to those without these conditions. This is something we have been aware of, but reinforces the need to either evaluate for or provide psychotherapy for those individuals with chronic headache, epilepsy, brain injury, and other neurological conditions, and also psychotherapeutic evaluations and treatment for those with chronic neuropsychiatric conditions. Barnes AJ, et al "Suicide and self-injury among children and youth with chronic health conditions"Pediatrics 2010; 125: 889-95
The Hunt for an Autism Drug As roughly one in 110 8-year olds are diagnosed with autism nationally, researchers continue to look for ways in which pharmaceutical remedies can contribute to gains for individuals with autism. To date, while many drugs are prescribed to address various secondary symptoms of autism, there is no single drug to treat autism spectrum disorders overall. This article from Business Week explores one family’s success with an Alzheimer’s drug from Forest Laboratories, Namenda in treating lack of communication and aggression. Clinical trials for this drug and others continue in an effort to unlock the pharmacological mysteries of autism.
Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model This model, developed by the University of California at Davis’ Mind Institute, provides powerful validation for intensive intervention (2 hours per day, five days a week) for those children with Autism who are 0-3 years. The study involves Pivotal Response Training along with the "Denver Model": overall a mix of Applied Behavior Analysis (ABA) and other developmental/behavioral interventions. The community based (i.e., the comparison/control group) interventions also had good outcomes, but the more intensive, structured program was superior. This research validates the need for reliable and early identification and diagnosis of autism, and suggests that current early intervention programs for autism should integrate more intensive ABA interventions and models.
FDA Approves Bristol-Myers' Abilify To Treat Irritability In Pediatric Patients With Autistic Disorder - Update Abilify (aripripazole) now joins Risperdal (risperidone) as the only medications specifically Food and Drug Administration (FDA)-approved for an indication of pediatric Autism: in this case, for the symptoms of "irritability" defined as aggression, self-injurious behavior, tantrums, and mood swings. There are, however, less toxic medications presently available on the market that can address such behaviors, although they are not presently FDA approved for such targeted use. Additionally, and unfortunately, the clinical trial designs used in these and other studies of aberrant behavior in autism do not utilize functional behavior analyses during screening to differentiate and eliminate functional behaviors, thus confounding results and conclusions.
AAN: Atypical Antipsychotic Reduces Autism Irritability This article reviews a study looking at the efficacy and safety of aripiprazole for the treatment of irritability associated with autistic disorder in children and adolescents (6-17 years). (Lewis D, et al, AAN 2009; Abstract 850.005; article written by Kristina Fiore, Staff Writer, MedPage Today, reviewed by Dori F. Zaleznik, MD) Click here for medpage summary
The Underrecognized Epilepsy Spectrum: The Effects of Levetiracetam on Neuropsychological Functioning in Relation to Subclinical Spike Production. The purpose of this study was to determine whether treatment with levetiracetam improves neuropsychological functioning in children and adolescents who have evidence of subclinical spike production associated with attention and learning difficulties. Levetiracetam was generally well tolerated by a group of patients with attention and learning problems that have associated abnormal cortical electrical activity without clinical seizures and associated neuropsychological deficits.
LEGO® therapy and the social use of language programme: an evaluation of two social skills interventions for children with high functioning autism and Asperger Syndrome. LEGO® therapy and the Social Use of Language Programme (SULP) were evaluated as social skills interventions for 6-11 year olds with high functioning autism and Asperger Syndrome. Results showed that the LEGO therapy group improved more than the other groups on autism-specific social interaction scores (Gilliam Autism Rating Scale). Maladaptive behaviour decreased significantly more in the LEGO® and SULP groups compared to the control group. There was a non-significant trend for SULP and LEGO® groups to improve more than the no-intervention group in communication and socialization skills.
Parent training key to improved treatment of behavior problems in children with autism This study examined the use of risperidone alone versus using risperidone in conjunction with a behavioral intervention that consisted of parent training conducted in 14 sessions over six months. This study provides scientific support that behavioral intervention is valuable as the group receiving the combination of medication and parent training showed a greater reduction in disruptive behavior, tantrums and aggression compared to the group receiving medication only. In addition, the combination therapy group also ended the trial taking 14 percent lower doses of medication.
Treatment Warnings Promoting social behavior with oxytocin in high-functioning autism spectrum disorders This study purports to show improvement in social function with oxytocin (Pitocin). But, even though it will be publicized, beware of the very small numbers of subjects, and the fact that the primary outcome measure was simulated socialization with an avatar-like figure on a computer, and not "real-life" social interaction. Click here for the original article.
Dietary Supplement Warnings As you know, there are a large number of products being sold to the autism community under the umbrella of "dietary supplement." By using such a label, such products avoid FDA regulatory authority. Unfortunately, there can be a fine line between a "natural" product that is truly "food" and can be considered a dietary supplement, and those "natural" substances that have pharmacological effects (and side effects). The link below is to a Chicago Tribune article concerning a product marketed as "OSR#1". The manufacturer, "CTI Science", has sold this product as a safe dietary supplement. However, it turns out that OSR#1 is an industrial chemical with powerful chelation properties used to treat wastewater from mines. Chelation is an unproven treatment that is often promoted for Autism, but can be very harmful, in some cases associated with death.The FDA has issued a warning letter to CTI Science about OSR#1, stating that OSR#1 should be considered a new drug, and be subject to appropriate safety testing and FDA new drug approval before being sold. Click here for the original article. Click here to review related articles:
Anticonvulsant Medications and the Risk of Suicide, Attempted Suicide, or Violent Death In analyzing over 300,000 patients 15 years and older initiating treatment with an antiepileptic drug (AED, also known as anticonvulsants) between 2001 and 2006, the authors found an increased risk of suicidal acts beginning as early as the first 14 days of therapy with the following AEDs compared to topirimate (Topamax): gabapentin (Neurontin), lamotrigine (Lamictal), oxcarbazepine (Trileptal), tiagabine (Gabitril) and valproate (Depakote). They found 827 suicidal acts (including 801 attempted suicides) and 26 completed suicides, as well as 41 violent deaths. Thus, similar to other classes of drugs that can affect behavior, there may be a window of behavioral vulnerability that exists prior to achieving the full therapeutic effect of these medications, and/or there may be a risk at any stage of therapy. The study was unable to determine which of the AEDs had a higher risk of inducing these adverse behavioral effects (although see gabapentin below), and the median follow-up was only 60 days. The overall incidence of completed suicides, attempted suicides and violent deaths ranged from 6.2 per 1000 person-years for primidone to 34.3 per 1000 person-years for oxcarbazepine. In 2008, the FDA required AED drug labeling to provide a warning of an increased risk of suicidal thoughts and behaviors. That warning was based on a meta-analysis not large enough to investigate the risk of individual AEDs. This study reinforces those warnings, and the need for careful monitoring of individuals prescribed AEDs. This study is somewhat limited by the fact that patients were not categorized by the indication for the prescription, and thus, does not differentiate if there is any increased risk based on the underlying disease state: mood disorders, epilepsy, headaches and other disorders. However, compared to carbamazepine (Tegretol), there was an increased risk with gabapentin in certain subgroups: younger and older patients, patients with mood disorders and epilepsy.
Comparative Safety of Antidepressant Agents for Children and Adolescents Regarding Suicidal Acts This April research study reinforces the risk of increasing suicidality among children and adolescents who start on antidepressants. The effect was found to be similar across all types of antidepressants (i.e. similar risks for SSRI and tricyclic compounds). Schneeweiss, S, et al “Comparative Safety of Antidepressant Agents for Children and Adolescents Regarding Suicidal Acts” Pediatrics, 2010; 125: 876-888.
Randomized Trial of Hyperbaric Oxygen Therapy (HBOT) for Children with Autism Researchers test the effects on hyperbaric oxygen therapy for children with autism and learn there is no scientific evidence to support claimed benefits of HBOT at 24% oxygen at 1.3 atmospheric pressure. Both observational and standardized psychological assessments were used to measure the effects of the HBOT. Of interest is that one of the authors of this new article is an HBOT proponent: changing his views in the face of science? Click here for the article. Research in Autism Spectrum Disorders 4 (2010) 268–275 Comments from Dr. Mintz:
For now, the evidence is overwhelming concerning the lack of efficacy of HBOT for Autism. As in all treatments for Autism, there will be persistent anecdotal reports of efficacy in individual cases, and in some cases it may represent improvement, but the scientific studies suggest that any improvements are likely attributable to placebo effects, at great expense, and potential harm. The ongoing issue with unproven therapies for Autism is that the therapies are promoted and sold prior to proving the proposed hypothesis with scientific rigor. The usual process of scientific inquiry is that the burden is on the individual proposing a hypothesis to devise an experiment to prove the hypothesis, with subsequent further reproducibility and replication. However, there are many practitioners promoting unproven, and potentially harmful, therapies on a vulnerable population. There are many examples of Autism therapies that became widespread, and only proven to lack efficacy with after-the-fact well designed scientific studies. A classic example was the use of secretin, and HBOT is following in those footsteps.
Hyberbaric Oxygen Treatment (HBOT) for children with autism Dr. Mintz responds to claims that HBOT is a "promising" treatment for Autism In a recent BioMed Central articles, a group of providers of hyperbaric oxygen treatment (HBOT) claimed significant improvements of functioning in autistic children after providing 24% oxygen (room air is 21%) at a slightly higher pressure (1.3 atmospheres; room air is approximately 1.0 atmospheres), concluding that HBOT is a “promising” treatment for autism. (Rossignol DA, Rossignol LW, Smith S, et al: Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial., BMC Pediatrics 2009, 9:21, doi:10.1186/1471-2431-9-21) The children were subjected to 40 hyperbaric treatments in four weeks. However, Dr. Mintz and colleagues have posted a rebuttal, pointing out significant flaws in the scientific methodology of the study, and questioned the clinical relevance of the authors claims and conclusions. [see:( Article Comments); scroll down for Dr. Mintz’s rebuttal: it is the 9th comment] Other readers responded that the same amount of oxygen could have been easily delivered with a simple oxygen mask, and avoid the excessive costs and burdens of a hyperbaric oxygen chamber. Dr. Mintz and colleagues deduce that not only are the conclusions of the authors misleading, but also the authors’ own research data does not support the use of HBOT for autism. The authors have responded (comment #10) disputing Dr. Mintz and colleagues rebuttal. Although it is important to continue to explore for new and promising treatments for autism, it is also imperative that scientific data is properly interpreted before presentation to the public as “evidence-based”. Families confronted with the misfortunes of autism are bombarded with an array of conflicting advice on the causes and treatments of autism spectrum disorders. It is imperative that the medical community provides scientifically rigorous studies and valid conclusions for guiding and advising the public towards evidence-based therapies and interventions. As it now stands, it is Dr. Mintz' opinion that HBOT for children with Autism Spectrum Disorders does not have sufficient scientific validity for its use, and only a paucity of safety data in this population. It is the opinion of Dr Mintz and CNNH that HBOT is an expensive, burdensome, and unproven treatment that should not be recommended to families for the treatment of Autism Spectrum Disorders. The authors' contention that HBOT has a better cost-benefit ratio than speech, occupational and applied behavioral analysis treatments is an unfounded and irresponsible recomendation to the public. A child and his grandmother recently died as a result of an explosion occurring during a HBOT treatment session. See: Related Article by CBS News
Autism treatment: Science hijacked to support alternative therapies -- chicagotribune.com This article in the Chicago Tribune points out how legitimate scientific inquiry and research can be prematurely "hijacked" to justify the business of false hope and bogus therapies for autism. One of the more egregious statements in this Tribune article is attributed to Dr. Bradstreet, who stated that all children with autism should receive intravenous immunoglobulin (IVIG) therapy. Providing a single therapy, particularly a biological product that can be potentially harmful, for a behaviorally defined disorder that is clinically heterogenous and biologically diverse does not make scientific sense. There is also discussion regarding the dangers of Hyperbaric Oxygen Therapy (HBOT), including the rebuttal to the manuscript of Rossingol et al by CNNH’s Dr. Mintz and colleagues [i.e., the reference to "...three prominent pediatric neurologists..."]. When looking to identify a treatment for a particular condition, such as autism, it must be remembered that there are no treatments that can benefit all individuals: one needs to talk about treatments for individual sub-types of autism spectrum disorders, since biological causes differ from one individual to the next.
Autism: Kids Put at Risk Many parents have pursued alternative therapies claiming to treat or even cure autism in an effort to do everything possible to help their child. Unfortunately, these therapies are untested and therefore, unscientific and may pose a grave danger to children, according to this investigative report.
JAMA -- Abstract: Cardiometabolic Risk of Second-Generation Antipsychotic Medications During First-Time Use in Children and Adolescents According to this article in the Journal of the American Medical Association, children and adolescents are highly vulnerable to antipsychotic medication–induced weight gain and metabolic adverse effects. First-time second-generation antipsychotic medication use was associated with significant weight gain with each medication.
Sudden Death and Use of Stimulant Medications in Youths The authors look at and provide support for the association between the use of stimulants (medications used primarily for the treatment of ADHD) and the rare event of sudden unexplained death in children and adolescents. The authors found that out of 564 cases of sudden unexplained deaths occurring in children ages 7 through 19, there were 10 (1.8%) occurring in youths taking the stimulant methylphenidate, compared to only two (0.4%) in a comparison group of 564 youths who died in motor vehicle accidents. This raises concerns and the need to provide basic baseline cardiac screening prior to starting stimulant medications (see next article on Cardiovascular Monitoring of Children and Adolescents). On the other hand, untreated ADHD can lead to a higher incidence of motor vehicle accidents and substance abuse. Click here for the original article
Cardiovascular Monitoring of Children and Adolescents With Heart Disease Receiving Stimulant Drugs This website offers a scientific statement from the American Heart Association Council on Cardiovascular Disease in the Young Congenital Cardiac Defects Committee and the Council on Cardiovascular Nursing Legislation / Advocacy
State Variation in Underinsurance Among Children With Special Health Care Needs in the United States NJ leads the nation in "underinsurance" for children with special needs. With the present debate focused on providing insurance, there is a neglect of this problem of underinsurance: all the more the reason NJ needs innovative methods for delivering health care to special needs populations.
New Jersey becomes the fifteenth state to sign autism insurance reform On August 13, 2009, insurance reform bill, S. 1651/A2238 was signed into law by Governor Jon Corziine. This legislation requires New Jersey insurance companies to pay for evidence-based, medically necessary autism therapies, up to $36,000 annually per child under 21 years old.
Supreme Court decision made concerning Forest Grove School District v. T.A. In this case the Supreme Court ruled that public school districts would need to reimburse for private school placement when the district inappropriately denies special education classification and an IEP for a child under the IDEA (Individuals with Disabilities Education Act). The implication of this decision is that a family can seek reimbursement for private school placement if their school district evaluates their child and refuses to provide an adequate IEP, or no IEP. There is, however, a risk as reimbursement will occur only if the court finds that the public school violated IDEA (i.e. failure to provide a FAPE = Free Appropriate Public Education) and that the private school placement is proper. This decision places added importance on independent evaluations and the need for school districts to provide innovative ways in which to maintain students in district. Otherwise, as raised in a very interesting dissenting opinion by Judge Souter, there may be an excessive financial burden on school districts that are already devoting close to 20% of their budget for special education and legal expenses for due process hearings. To see the complete decision, visit the following web site: Click here for the original article
Governor Corzine, Commissioner Howard meet with advocates and parents of children with autism In April, Autism Awareness Month, Governor Corzine and Commissioner Howard visited CNNH to talk with families and advocates about the state’s initiatives to support individuals with autism by promoting early diagnosis and improved care. Click here for original press release
Autism in the News BBC News - People with autism 'have problem with self-awareness' The inability to recognize other's emotions, or to understand the world from others' perspectives is a hallmark of autism, and what is felt to be a major contributor to impairments in social development in autism spectrum disorders. Research recently conducted at the University of Cambridge, using neuroimaging biomarkers, suggests that individuals with autism may also be unable to fully understand their own thoughts or feelings.
Autism seen as asset, not liability, in some jobs - Mental health- msnbc.com It adds to the growing debate about neurodiversity: where does normalcy end and abnormal begin? Who should make such definitions and distinctions? As in a previous posting, it also begs the questions about the potential for diagnoses like Asperger Disorder to be "lumped" into a larger Autism Spectrum Disorder category in the upcoming DSM-V.
Revising Book on Disorders of the Mind Will the diagnosis of Asperger’s syndrome be folded into the broader category of autism spectrum disorder? This question, along with many proposed alternatives to revise the Diagnostic and Statistical Manual of Mental Disorders are currently being discussed and debated by medical professionals and advocacy groups. The fifth edition of this encyclopedia of mental disorders is due to be released in 2013. According to the editor of the manual’s fourth edition, changes made to the directory will have implications for the fields of psychiatry, pharmaceutical marketing, research, the legal system and especially, the individuals who are to be considered normal versus not normal and able-bodied versus disabled.
Children’s Specialized Hospital, Kohl’s produce video on understanding autism Much attention has been given to educating parents and teachers of children with autism about the neurological disorder, but what about educating the community? This article discusses the efforts of parents, a local provider and a nation-wide company to provide businesses with autism education.
Karen Heller: A false promise of help | Philadelphia Inquirer | 11/21/2009 Many states throughout the United States have recently passed laws mandating insurance companies to reimburse for certain autism therapies. This was great news for the families of children with autism having to spend thousands of dollars each month on necessary therapies. Unfortunately, as this article points out, in some circumstances insurance companies are now resisting making payment when therapies are not conducted by licensed and credentialed providers. And, since the demand for therapy seems to outweigh the supply of qualified therapists, many families are still paying “out of pocket” for these therapies. Furthermore, insurance reimbursements for the services offered by qualified providers are often insufficient, which discourages health care providers and therapists from seeking insurance credentialing.
Epilepsy: Fighting For A Cure - 60 Minutes - CBS News More Americans are suffering from epilepsy than Parkinson's, cerebral palsy and multiple sclerosis combined, according to this report by 60 Minutes on a CBS News report. And, yet, epilepsy has received less funding and attention that other diseases with its prevalence. This news report explores one family’s experience with epilepsy and the progress that is being made with various treatments. Click here for the news broadcast. "I am not a puzzle, I am a person" People with autism don't need to be "cured," argues the burgeoning "autism culture" movement. Not all parents or medical experts agree. Click here for the original article
Patient Education and Video Links A Parallel Universe: A Journey Through Autism Click here for link to purchase video CNNH Behavior Services Video Tips: Autism After 16 This site is devoted to issues impacting the lives of adults on the autism spectrum, especially legal, financial, residential, employment and social issues. The site focuses first on the transition into adulthood that is poorly understood by most families. Here you will find short news stories, longer feature articles, guest commentary and regular columnists. They have a cadre of writers, some of whom are adults on the spectrum, who will look at adult issues from their own unique points of view. Rethink Autism and Autism Speaks: Free Webinar for Newly Diagnosed Families
Early Warning Signs of Autistic Spectrum Disorder
Autistic-Like: Graham’s Story General Information New Jersey Family Care Free or low-cost health insurance is available for New Jersey children!
Autism Insurance Reform Checklist for Parents The New Jersey state government enacted a law on February 9, 2010 requiring some insurance companies to provide health insurance coverage for evaluations and certain treatment therapies for Autism Spectrum Disorders and developmental disabilities. To determine if your policy covers these autism services, we encourage you to use this checklist to answer a few questions.
Parent Groups / Advocates Statewide: NJ Council on Developmental Disabilities
Autism New Jersey formerly COSAC
Division of Developmental Disabilities
NJ Early Intervention System: Family Matters
New Jersey Governor's Council for Medical Research and Treatment of Autism
Statewide Parent Advocacy Network (SPAN)
Regional and County Supports: Care to Share Support Network The Care to Share Support Network was started to help families obtain resources, services and support for their children with special needs. Support meetings for parents, siblings, and teens with disabilities, workshops for parents and professionals, on-line community chats and grants are offered from this Bridgewater, New Jersey-based organization.
Camden County Partnership for Children
FACES (Families for Autistic Children Education & Support) Autism Support Network
Parents with Autistic Children Together (PACT)
The Salem County Center for Autism |