Autism & The Law

How the Law Evolved to Provide Services for Children with Disabilities

Written on 26 September 2010, for:
The International Center For Autism Research and Education

Congress enacted the Education for All Handicapped Children Act (Public Law 94-142, or PL 94-14), and was signed into law on November 29, 1975 by President Gerald Ford.

PL 94-14 was to support states and localities in protecting the rights of, meeting the individual needs of children with disabilities and their families. This landmark law is currently enacted as the Individuals with Disabilities Education Act (IDEA), as amended in 1997.

The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.

Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.

Under IDEA 2004:

– Special education and related services should be designed to meet the unique learning needs of eligible children with disabilities, preschool through age 21.

– Students with disabilities should be prepared for further education, employment and independent living.

As of 2006, more than 6 million children in the U.S. receive special education services through IDEA.  Children with disabilities who qualify for special education are also automatically protected by Section 504 of the Rehabilitation Act of 1973 and under theAmericans with Disabilities Act (ADA). However, all modifications that can be provided under Section 504 or the ADA can be provided under the IDEA if included in the student’s IEP. Students with disabilities who do not qualify for special education services under the IDEA may qualify for accommodations or modifications under Section 504 and under the ADA. Their rights are protected by due process procedure requirements

Autism is a diagnosis that falls under Americans with Disabilities Act (ADA), qualifying a student with Autism Spectrum Disorder to receive services under the current law.

Source: 

http://idea.ed.gov/

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Autism-Vaccine Link

Federal Appeals Court Rejects Autism-Vaccine Link

Written on 25 September 2010, for:
The International Center For Autism Research and Education

The autism-vaccine debate has triggered a national following from a highly emotional group of people around the globe. These are parents of children diagnosed with autism. All of these parents are dead set to prove that their children’s autism was caused, triggered, or exacerbated by a combination of the measles-mumps-rubella vaccine plus other shots, usually given at around 18 months of age.

But science is out to prove them wrong.  Science years ago reached the conclusion that there’s no connection, but on August 26, 2010 the Federal Appeals Court threw out the claim, saying that no link has been scientifically proven.  More than 5,500 families sought compensation through the government’s Vaccine Injury Compensation Program, leading to disappointments and frustration as a result of this ruling.

As a mother of two children already diagnosed with Autism, I have been sharing my story with people, hoping to help science reach a conclusion. The first child was vaccinated, the second child wasn’t. There, now you have a case study right in my family.

I do strongly believe though that because of the brain-gut connection, these children have a weakened digestive system which impacts their autoimmune response to chemicals and even food. Add vaccines on the typically recommended schedule by the CDC and yes, you will get a response from a child with an underlying condition. But autism is there from birth, you will simply see it popping out following the vaccines.

Worry about a vaccine link first arose in 1998 when a British physician, Dr. Andrew Wakefield, published a medical journal article linking a particular type of autism and bowel disease to the measles vaccine. The study was soon discredited, and British medical authorities now are investigating professional misconduct charges against Wakefield.

Then came questions about thimerosal, a preservative that manufacturers began removing from all vaccines given to infants in 2001. Today it is present only in certain formulations of the flu shot.

Immunizing on an alternative schedule or delaying vaccinations until a child is closer to school age is still highly recommended for those with concerns.  Federal law requires doctors to discuss the benefits and risks of any immunization before administering it, so your doctor should be willing to address your questions.

Currently, formerly eradicated diseases are returning to haunt us and a whole new generation of unvaccinated children are entering the school systems. It is still highly recommended to vaccinate children.  A modified or “spaced out” schedule offers peace of mind for those who are worried about shocking the system with a load of vaccines.

Recommended Reading:

  1. A Parents’ Guide to Managing Vaccinations: What to do if You Don’t Want Your Child to Get 8 Vaccines at Once? Written by Ricky Goldstein
  2. Making the Connection: Autism and Immunology Written by Sonia Mehta

Autism Action

Autism Action: A Global Perspective

Written on 22 September 2010, for:
The International Center For Autism Research and Education

The Center for Disease Control reports that 1 in every 110 children in the United States is affected by autism [1]. These numbers are a stark contrast to the early 2000’s and 1990’s, when the prevalence rates were exponentially lower, and the disorder itself was not recognized or understood by many in the general population.

This increased prevalence has spawned a new social movement towards answers, awareness and empathy for the ASD community. There are several unanswered questions regarding the cause of this disorder; research has indicated a dual-causal model, with both genetic and environmental components influencing the symptoms.

As we scramble to find answers, many people glance feverishly at the rising prevalence rates and wonder whether America is in a trend of over-diagnosis, or if there is a real epidemic permeating through our society. Much of this can be made clear by looking outside of our borders, and observing diagnosis and incidences. While autism is still misunderstood in some cultures, and individuals who suffer from the disorder are often ostracized, many nations are working hard to battle stereotypes and provide treatment.

It is difficult to have accurate estimates on global prevalence rates. In fact, the World Health Organization (WHO) does not maintain specific global statistics on the prevalence of autism spectrum disorders or appropriate treatments. In the WHO’s 2007 Global Burden of Disease report on mental and neurological disorders, the organization highlighted the critical situation the world faces with a growing population that includes those with autism [2].

In 2007, the Autism Society of America provided this estimate:

Country Number Source
China 1,100,000 Peking Health Science Center (estimate based on official 2005 rate of 1.1 in 1000 children affected)
India 2,000,000 Action for Autism India (based on an estimated rate of 1 in 250)
United States 1,500,000 U.S. Centers for Disease Control and Prevention ADDME Study 2007 and Autism Society of America
United Kingdom 650,000 National Autistic Society 2006 (based on rate of 1 in 100)
Mexico 150,000 Based on estimates by Ministry of Health of 2 to 6 per 1000
Philippines 500,000 Autism Society of Philippines
Thailand 180,000 Estimate of the Minister of Mental Health

Chart A: Estimated Number of Individuals with Autism in Selected Nations, 2007 (calculated from prevalence rates in some cases)

Though these numbers are not current and are general approximations, from what we can gather, autism is becoming increasingly prevalent in other countries as well. For this reason, it is imperative that we continue to spread awareness past our own borders, so as a global collective, we can help to influence policy, provide care, and be catalysts for research and change.

Already, organizations like the U.N. are initiating more aggressive approaches towards helping developing countries in autism education and treatment. In 2008, they held the United Nations World Focus on Autism summit.

Ban Soon-taek, Chair of the Forum and wife of U.N. Secretary General Ban Ki-moon spoke at the gathering, and stressed the importance of social and cultural outreach for autism:

“Not too long ago, those affected by autism-related disorders were set aside, placed in institutions, or dismissed as untreatable lost cases, today, sadly this reality is still prevalent in some parts of the world. [3]“

While extending our reach into the far corners of developing nations seems ambitious; it is essential. In many countries, individuals with autism are abused or avoided by members in their community. Often times this is because their disorder is not recognized, or mistaken for something else. Autism is a developmental disorder, and therefore accurate diagnosis and treatment is imperative to the success and wellness of an individual who suffers from ASD. Having trained professionals to identify symptoms in early-childhood development and the resources to provide early intervention is one of our biggest challenges on a global scale today.

Some countries already have treatment centers and government grants for research springing up through bustling cities and quiet suburbs. The Israeli Society for Autistic Children known as ALUT provides educational, residential, vocational and leisure-time services to people with autism. They work to improve the services available to those affected by autism and their families [4].Also, in Israel, are global affiliate offices of the International Center for Autism Research and EducationIcare4autism. In July 2010, the global non-profit hosted a worldwide conference in Jerusalem that featured over 30 top autism experts, from around the globe, giving original dissertations and other presentations. There were also symposiums, panels and collaboration between experts.

At the 2010 International Autism Conference, Icare4autism’s Founder and President, Joshua Weinstein, Ph.D., M.B.A., made it a special point to speak with as many attendees as possible. At the event, Dr. Weinstein said that he felt “fortunate to be able to provide this educational event.”

Further south, Action for Autism, based out of Delhi, India, is providing support and funding research throughout India for autism. South Africa, a nation that has struggled with social/cultural stigmas in relation to autism, is receiving much support from organizations like Autism South Africa. ASA has helped to develop programs, special schools, and hosts symposium for the community that spotlights autism and ASD-related issues.

As the autism epidemic hits us hard at home in the U.S., I can’t help but wonder how developing countries, countries that are poverty stricken, and those that are amidst war and civil unrest must be managing this issue. We must all work to make this a cohesive, aggressive effort for the betterment of future generations.

A list of autism organizations in various countries can be found here: http://www.autism-india.org/worldorgs.html.

SOURCES

  1. Centers for Disease Control and Prevention (CDC). Prevalence of Autism Spectrum Disorders―Autism and Developmental Disabilities Monitoring Network, United States, 2006. MMWR Surveillance Summaries 2009;58(SS-10)
  1. “Incidence Numbers from Other Countries .” Autism Society . N.p., n.d. Web. 3 Sept.2010.<http://www.autismsociety.org/site/PageServer?pagename=community_world_incidence&gt;.
  1. Abedin, Shahreen. “Autism efforts go global at U.N. forum.” CNN Health 26 Sept. 2008: 1. CNN Health. Web. 3 Sept. 2010. <http://articles.cnn.com/2008-09-26/health/un.focus.autism_1_autism-rates-geraldine-dawson-world-autism-awareness-day?_s=PM:HEALTH&gt;.
  1. “a few words about us.” ALUT – The Israeli Society for Autistic Childrens. ALUT, n.d. Web. 3 Sept. 2010. <http://alutfriends.org/index-1.html&gt;.

Autism and Aging

Autism and Aging: What Happens when Children with Autism Grow Up

Written on 29 August 2010, for:
The International Center For Autism Research and Education

In a TIME magazine article “Growing Old With Autism,” published in May of 2009, Author Karl Taro Greenfeld describes the impact of his brother Noah’s care as he and his siblings are involved in their adult lives today.  Karl writes, “I toured those state hospital systems with my parents when we started looking for a place for a growing-up Noah. Those were terrifying visits: adult patients wearing helmets and restraints, howling and hitting themselves.”

After aging out the well established Board of Education IEP process, “for the profoundly autistic, graduation is perhaps the saddest day in their lives. For those who cannot enter the work force, continue on to more education or find some sheltered workshop environment with adequate staffing, there are few options. Far too few programs and resources are allocated for adults with autism.

By age 35, Noah had been living in institutions since he was 18. Greenfeld says “My parents are now in their 70s. My father underwent open-heart surgery a few years ago. Eventually, the responsibility for Noah will fall solely upon me. My travels, from Los Angeles to New York City to Paris to Tokyo to Hong Kong, will always bring me back to him. I don’t know any other life. I have no other brother.”

Aside from more general concerns such as residential and financial status, there is little known about how to cope with the daily struggles and complications that individuals with autism face as they grow older, with this disability. Considering that not all of those with autism, or a similar disability, will be living in a managed care situation, analysis and data collection into the most basic themes of aging and autism are necessary.

Across the globe, in Israel, the services for adults with Autism have been sprouting up all across the country at an astonishing pace. The number of state-of-the art institutions and in home care services are based on new millennium planning and well researched models, which is worth duplicating globally.  For example, Aleh’s network cares for Israel’s most severely disabled children, offering the best rehabilitation, the economical and social future of people with autism in Israel.  Aleh has built a village in Israel calledAleh Negev for seriously disabled children for when they become adults, a rehabilitative village for individuals who need around-the-clock therapeutic care.  Funds are raised in the United States with the American Friends of Aleh Foundation,  to keep this costly project alive.

In July, the International Center for Autism Research and Education, Inc., (Icare4autism) held their first annual International Autism Conference in Jerusalem. Over 600 attendees filled the Ramada-Renaissance for the grand scale event that featured over 30 speakers from around the globe. This conference featured medical and educational information pertaining to autism and also features lectures on ” The Aging with Autism Process.”

In America, employment rates haven’t changed since Americans with Disabilities Act passed.  A recent survey from the National Organization on Disability reported, “Of all working-age people with disabilities, only 21% say that they are employed, compared to 59% of people without disabilities.”

Liz Bell, the mother of Tyler, who has autism, is a very forward thinking person who has appeared on ABC news “Parents of Boy With Autism Map Out His Future as an Adult”.  Very few resources exist for adults with autism, leading many of them to live life in isolation. The Bells want to avoid that fate for their son, but they worry what his future will be like when they’re no longer there to offer support.