Autism

What is autism?
Autism is the prototypical neurodevelopmental disorder and the most severe of the Pervasive Developmental Disorders (PDD’s). Autism is characterized by persistent deficits in social cognition, language and circumscribed interests. These deficits typically appear before age three, and can be diagnosed by 18 months. To be considered autistic, a child must have a certain number of symptoms in the areas of social interaction, communication (specifically a language delay), and a restricted pattern of behaviors, activities and interests (often called stereotypic behaviors).

What are the autistic spectrum disorders?
Autism spectrum disorders are also known as Pervasive Developmental disorders, because they involve delay in many areas of development. They include Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Asperger Syndrome , and Rett Syndrome. PDD is a range of similar disorders that includes many different areas of developmental delay, of differing severities.

What is Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)?
PDD-NOS is also called atypical autism or mild autism. It means having differences in the same areas as in autism, only not to such a great extent. A child with PDD-NOS does not meet the criteria for any specific PDD.

What is Rett syndrome?
Rett syndrome is named after Austrian physician Andreas Rett who in 1965 described a cohort of females who experienced deterioration in global milestones with loss of purposeful hand movements, stereotyped hand wringing and loss of hand to mouth coordination and verbalization. Later they experienced respiratory dysfunction and seizures. Genetics studies have determined that the MECP-2 gene is responsible for this disorder.

What is Asperger syndrome?
L. Wing (1981) began publishing very small case studies noting differences between children with autistic behaviors who had no obvious language problems and more motor clumsiness. Although we regard them as on the spectrum the prevalence ma be as much as 5 times higher than for autism. In addition, Asperger syndrome individuals can have rather gifted profile, excelling in particular areas like WW II aircrafts etc.

How common is autism?
Autism/PDD occurs in about 1 in 125 births. Recently it is acknowledged to occur more frequently than had been previously documented. It is four times more common among boys than girls. Autism is found all through the world in families of all racial, ethnic and social backgrounds. According to recent studies, the number of cases of autism is on the rise. This is probably an international trend.

What causes autism?
Current research suggests that developmentally timed differences in the brain and central nervous system cause primary autism. What causes these differences in brain development is not yet known. However, a variety of factors are being investigated. These include infectious, metabolic, genetic, and environmental factors. Unlike Fragile X, autism is considered a complex genetic disorder (McCarthy, 2004). Converging lines of evidence from multiple scientific studies point to dysfunction of diffuse brain regions and have failed to locate a discrete lesion. These multiple regions of abnormal brain development involve cerebellum, temporal and frontal lobes and white matter tracts (Herbert et al., 2004). To date, genetic causes for one disorder commonly accompanied by autism (Fragile X) and one autism-spectrum disorder (Rett syndrome) have been identified and genetic "hotspots" for autism have been found. NIH research on possible genetic, infectious, immunological, and environmental causes and mechanisms of autism continues.

Do vaccines cause autism?
To date research has uncovered no connection between vaccines and autism (Taylor et al., 1999). Here are some helpful resources from the American Academy of Pediatrics (www.aap.org...What Parents Should Know About Measles-Mumps-Rubella (MMR) Vaccine and Autism, What Parents Should Know About Thimerosal, MMR and autism resources).

How are autism spectrum disorders diagnosed?
Your general pediatrician may hesitate to diagnose autism earlier than age three. But you may suspect a problem as early as 15-18 months. Language and hearing concerns are the most usual first signs. If your child is not developing language or is losing language, does "not hear you" a lot of the time, or does not share interest in things with you, you should have your child evaluated. Many children can be reliably diagnosed at 18 months old - and the earlier the diagnosis, the sooner you can start treatment. Take your child to a neurodevelopmental and behavioral pediatrician, pediatric psychiatrist, or pediatric neurologist (Filapek et al, 2000). They are experts in diagnosing autism, and can help you figure out the best treatment plan. An alternative to seeing a specialist is to go to your school system.

Should you see a school based specialist, ask your school system in writing for an evaluation of your child. They are required to provide it, at no cost to you. The purpose of an evaluation is to find out why your child is not meeting their developmental milestones. A team of professionals (Child Study Team) will work with you to evaluate your child. If they do not find a problem, you can ask the school system to pay for an Independent Educational Evaluation (IEE). There are set guidelines and rules about this, so you may not get it. You can also have your child tested again privately, and pay for it yourself. But check with your school district first to make sure they will accept the private test results. By law, the school system must consider the results of the second evaluation when deciding if your child can get special services.

Is there a cure for autism?
There is no cure for autism, but early and intensive treatment can help children with autism improve their communication and social skills. Treatment may include support and facilitation, behavior modification, educational therapy, and medicine.

What treatments are there for autism?
Find out all about early intervention programs. See websites (Zero to Three, First Signs, The National Institutes of Health Autism Resource Network). Follow the following steps:

A) It is most important to start treatment as early as possible, and make sure it involves lots of one-on-one interaction with your child.
The National Research Council's Committee on Educational Interventions for Children with Autism has published Educating Children with Autism. A consensus committee of experts from many different fields have created a “roadmap” to guide the education of young children (birth to age eight) with autistic spectrum disorders. A section entitled "Characteristics of Effective Interventions," on page 6 of the Executive Summary of the report, states [1]:
"The consensus across programs is generally strong concerning the need for: early entry into an intervention program; active engagement in intensive instructional programming for the equivalent of a full school day, including services that may be offered in different sites, for a minimum of 5 days a week with full-year programming; use of planned teaching opportunities, organized around relatively brief periods of time for the youngest children (e.g. 15- to 20-minute intervals); sufficient amounts of adult attention in one-to-one or very small group instruction to meet individualized goals. Overall, effective programs are more similar than different in terms of levels of organization, staffing, ongoing monitoring, and the use of certain techniques, such as discrete trial, incidental learning, and structured teaching periods. However, there are real differences in philosophy and practice that provide a range of alternatives for parents and school systems."

B) Consider additional interaction-based treatment program, there are several options:
• Applied Behavior Analysis (ABA)
ABA is a one-on-one, intensive, structured teaching program based on the ideas of behavior modification and involving reinforced practice of different skills. You may also hear it called Discrete Trial Therapy (or DTT).
• Stanley Greenspan's Developmental, Individual-Difference, Relationship-Based (DIR) Therapy (also called "Floortime")
DIR is an alternative to the behaviorism approach that is based more on relationships. The Interdisciplinary Council on Developmental and Learning Disorders (founded by Stanley Greenspan) has a parent-to-parent resource guide you might find helpful.
• Lovaas Therapy
This is an ABA method developed by Ivar Lovaas. (www.lovas.org).
• Other approaches, e.g. Sensory Integration Therapy
More information on several different behavioral and communication approaches to autism treatment. Read the American Academy of Pediatrics Policy Statement on Auditory Integration Training (AIT) and Facilitated Communication (FC)

C) What about alternative treatments?
A working definition of an alternative therapy is a “…treatment or intervention that do(es) not conform to standards of the medical community.” (Eisenberg, 1993). The role of complementary or unconventional medical treatments is on the rise with as many as 1 in 3 adults and approximately 50% of children receiving alternative medical care (Eisenberg, 1998). You may hear about new or alternative treatments that people are talking about. Before starting your child on one of these, talk about it with your child's doctor. Take a look at these red flags and rules of thumb for evaluating treatments. If you are curious about the research behind a specific treatment, do a search on Quackwatch.org. Many "treatments" that are marketed to parents of children with autism are very expensive, may harm you child, and are not based on sound research. The American Academy of Pediatrics’ Committee on Children with Disabilites has provided a series of consensus papers to guide physicians on the diagnosis and management autism (American Academy of Pediatrics, 2001) as well as on counseling families who chose alternative medicine therapies (American Academy of Pediatrics, 2001). These papers are an excellent jumping off point to consider the essential elements of what constitutes balanced advice to parents of chidren with autism. These papers accomplish two important goals. On the one hand they manage to consider alternative medicine as part of a wider field of, “Integrated Medicine.” Secondly, they provide nine specific recommendations directed at pediatricians to help counsel autistic patients and their families who are seeking experimental therapeutic options: 1) Seek information and share it with families, 2) Evaluate the scientifc merits of specific therapeutic approaches 3) Identify risks or potential harmful, 4) Provide families with information on a range of treatment options, 5) Educate families about all treatment approaches, 6) Avoid dismissing alternative therapies in ways that communicate a lack of sensitivity, 8) Recognize and guard against feeling defensive, 9) If alternative medicine approach is endorsed, offer to assist in monitoring, 10) Actively listen to the family and child with chronic illness.

My child was just diagnosed. Where do we start?
• Get your child in an early intervention program right away. Every state has one. Start by calling your local school district. For help locating your state's early intervention or special education program, visit NICHCY (National Information Center for Children and Youth with Disabilities), and go to your state's list of resources or call them at 1-800-695-0285.
• Make sure your child's therapy includes lots of speech and language.
• Include occupational therapy as well, especially if your child has sensory integration (SI) issues.
• Your child's specialist doctor may prescribe medication to help with certain behaviors/symptoms such as aggressive behavior or hyperactivity.
• Using diet and vitamins or other alternative therapies are not helpful in the majority of cases. Use your time and money on proven treatments: intensive, one-on-one behavioral therapy.

Books:
1. Engaging Autism: Helping Children Relate, Communicate and Think with the DIR Floortime Approach by Stanley I. Greenspan
2. The ADHD-Autism Connection: A Step Toward More Accurate Diagnoses and Effective Treatments (Paperback) by Diane Kennedy, Temple Grandin.

Websites and Organizations:
• Clinical Practice Guideline for Autism/Pervasive Developmental Disorders: Assessment and Intervention for Young Children (Age 0-3 Years) from the New York State Department of Health Early Intervention Program.
• The American Academy of Pediatrics policy statement on The Pediatrician’s Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children.
• The Autism Society of America (ASA) works to increase public awareness about autism and the day-to-day issues faced by people with autism and their families. They provide information and education, support research and advocate for programs and services for the autism population. The ASA has state and local chapters. Call toll-free 1-800-328-8476.
• New Jersey State Resources: http://www.autism-pdd.net/links/njersey.html
• The New Jersey Autism Study (NJAS);http://www.cdc.gov/ncbddd/dd/aic/states/nj.htm is a multiple-source public health investigation to determine and monitor the number of children with an Autism Spectrum Disorder (ASD). This epidemiologic study will help establish, for the first time, an accurate baseline count of the number of New Jersey children with autism.
• The New Jersey Center for Outreach and Services for the Autism Community (COSAC) is a nonprofit agency providing information and advocacy, services, family and professional education, and consultation to New Jersey's autism community. The main phone number for the COSAC office is 609-883-8100. To reach the toll-free Information & Referral Line (available in New Jersey only), please call 1-800-4-AUTISM.
• The Autism National Committee strives to protect and advance the human rights and civil rights of all persons with autism, PDD, and related differences of communication and behavior. Their website contains information on politics and legal issues, early intervention and education, community living issues, and advocacy.
o Autism National Committee
635 Ardmore Avenue Ardmore, PA 19003-1831
• NICHCY (National Information Center for Children and Youth with Disabilities, now called the National Dissemination Center for Children with Disabilities) provides information and makes referrals in areas related to: early intervention, special education and related services, individualized education programs (IEPs), family issues, disability organizations, professional associations, education rights, transition to adult life, and more. They can provide personal answers to your questions, fact sheets, state resource sheets, parent guides, reading lists, and referrals to other organizations. Materials are also available in Spanish. Call toll-free 1-800-695-0285
• The Yale Child Study Center's Developmental Disabilities Clinic and Research Homepage has lots of information on PDDs, including autism, Asperger syndrome, Rett disorder, and childhood disintegrative disorder.
• Autism web resources from the AAP National Center of Medical Home Initiatives for Children with Special Needs
• Division TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) at the University of North Carolina at Chapel Hill has information about autism, Asperger syndrome, and educational and communication approaches.
• The National Institute of Child Health and Human Development has an autism page that lists their resources.
• Parents of Autistic Children is a New Jersey-based organization of parents that provides service to the autism community. Their website offers an on-line distance learning lecture on Applied Behavior Analysis (ABA) and verbal learning.
• NAAR (National Alliance for Autism Research) promotes and funds research on causes, prevention, and treatment of PDDs. Phone is 609-430-9160.
• Zero to Three is the nation's leading resource on the first three years of life, with a mission to strengthen and support families, practitioners and communities to promote the healthy development of babies and toddlers. 

Literature cited:
(1) National Research Council (2001) Educating Children with Autism, Committee on Educational Interventions for Children with Autism. C Lord and JP McGee, eds. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.
(2) Consensus in Child Neurology (2001) Biological Bases and Clinical Perspectives in Autism.
(3) Practice Parameter: Screening and diagnosis of autism Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society, P. Filapek et al., (2000).
(4) Taylor B, (1999) Autism and measles, mumps, and rubella vaccine: no epidemiological evidence for a causal association. Lancet, 12;353(9169):2026-9.