Mah Nishtanah

Mah Nishtanah – Four Questions by the Aspie Son
Written from the perspective of a boy with Asperger’s Syndrome

Published in: Spirit Magazine, and Inyan – Hamodia’s Weekly Magazine – Passover Edition, Spring 2011

“Mommy, everybody is looking. I don’t want to say this out loud, can I go in the kitchen?”

“Tatte Layben, I… Ma! If Zeidy is here by the seder, then I think I should say Zeide Layben”.

“Zeide Layben… Ma! Zeidy is alive, and everybody can see that. Why do I have to announce it?”

“Zeide, ich vil bei dir fregen di fir kashes…

Mah Nishatana Halayla Hazeh… Why is this night different from all other nights? On all the other nights I can eat my rice cake that I eat every night, this time. But tonight, and on this night only… (Ma! We eat matzah the entire Pesach, why do I have to say on this night only?!)…more than any other night, why do we have to eat potato? You know it’s soft and mushy and I hate the way it feels in my mouth? And then when I do swallow it, I can’t drink again until after the next Kos, after saying mah nishtanah?

Why is this night different from all other nights? On all the other nights I can sit with my comfortable shabbos shirt, the one that is made to look like a shirt but is really a t-shirt, the one that has no seams or labels? Why on this night do I have to wear this itchy glittery shirt that I made with the O.T. by therapy? My fingers got all sticky from the glue and I had glitter on my eyelids for three days and three nights. And also, I think there are some rabbonim who hold that glue is chometz! And people might not know that glitter is made of very small, 1 mm pieces of paper, glass or plastic painted in metallic, neon and iridescent colors to reflect light in a sparkling spectrum. Glitter was invented by Henry Ruschmann. This is really very interesting! Which reminds me of the next question…

Why is this night different from all other nights? On all the other nights I keep my salad dry without dressing because I hate dressing and nobody forces me anymore. But tonight, and on this night only, and also tomorrow night at the second seder because we are in galus and in chutz l’aretz, not like the people who in Eretz Yisroel have only one seder each year. In America, we have two, and also if an American goes to Israel for Yom Tov, they must have two sedarim. That’s why I don’t want to go to Israel on Yom Tov because it would make me feel all mixed up inside and my brain would feel all funny and I would see everything in jumping zig-zags and I would get very upset and I would have to make that noise with my mouth because it feels better afterwards. I would much rather have two seders over here, as long as I can stay in the kitchen. And, also, if I can have my romaine lettuce dry, without being forced to dip it in the charoses, which is very old apples and are already brown, and brown is my worst color.

Why is this night different from all other nights? On all the other nights I can sit on my special chair by the wall in the kitchen, where nobody can touch me or breathe near my plate, but tonight, and also tomorrow night, we have to eat reclined, and that means I would be touching Ari’s chair. If I touch Ari’s chair, I will touch Ari’s right leg and I know he will kick me. Last year in Bubby’s house he kicked me after the third kos, and when I was third grade, I was leaning on cousin Chaim from Lakewood who was 14 then, and he almost kicked me but I hated touching him because I was worried that I would get too close to his beard. His beard looked like it would be prickly and it would make me feel like I need to run to my room and bang my head for a long long long time. And then my therapist will get upset that I didn’t do the brushing exercise.

Ma! When is this over? Can I stop saying Mah Nishtana and drink some grape juice now?”

Please do not reprint or photocopy without permission. 

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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/

Healing Harvest

Healing Harvest: Autism From Nature’s Bounty

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

In today’s technological age, we often associate healing and therapeutic powers with the latest gadgetry in surgical procedures and advances in medicine and drugs.  When looking back through the ages, the focus of medicine has been strongly linked to nature. Some of our earlier hospitals were set in monasteries, and herbs and prayer were the focus of healing.

Fast forward to today’s explosion of autism on the rise, we see many teachers turning to nature once again in their work with children on the Autism Spectrum. The Autism Academy of Learning in Toledo, Ohio has teamed up with the Toledo Zoo ZOOTeens Program and Toledo Grows Program to build a vegetable garden on school grounds. One key skill the children are developing, by working in the garden, is patience, said school Founder and Board President Carol Holmes. Waiting is one of the hardest skills for autistic kids to learn, she says.

Last week, fifty-five students aged 6 to 21 turned out to harvest a bountiful array of produce from the school’scommunity garden party. All of the students at the school have varying degrees of autism.  The garden – 13 raised boxes measuring eight by four feet – holds other lessons for the students as well. In caring for the plants, they gain experience of working together and learn about where their food comes from. The harvested produce is donated to the Assumption Outreach Center, a local food pantry.

Bonnie B. Hebert of Louisiana has written a set of guidelines for designing a therapeutic garden for autistic children.  This extensive list has been written by reviewing literature onhealing gardens, and the history of gardens in hospital settings.  In addition, published work on the effects of nature on stress and health outcomes and theories as to whynature is restorative was also reviewed.

In studying the effects of gardening on the subject children, Herbert took the children out of the small classroom and into the school garden.  During these outings she observedlittle to no outbursts of aggression and/or self-stimulating behaviors and more cooperative behavior.  The outdoor environment seemed to have a positive effect on the students and it gave the teachers a new resource in their teaching environment.

Gardens can be designed to be indoors as well as outdoors, on rooftops and even city window boxes. With so much positive feedback from professionals, gardening seems to be a promising approach.

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

Early Autism Diagnosis

Can Autism Be Accurately Diagnosed by Close to One Year of Age?


Written on 27 September 2010, for:
The International Center For Autism Research and Education

Many scientists are eager to find a common pattern in early behaviors. The purpose of these studies is to point fingers at a diagnosis from earlier on. If you can predict an autism diagnosis based on early behaviors, then you can better provide services to the child from an earlier age. The purpose is not to label sooner, but rather to lead to a helpful direction to parents and caregivers from early on.  Early diagnosis of the Autism Spectrum Disorder allows for early intervention, which can make a major difference in helping children with autism reach their full potential.

Some promising studies are very interesting.  For example, we all know that hand flapping and lack of eye contact, as well as communication delay is a really strong indication for autism.  However, what about some children who show a preference for geometric patterns at an early age? This is actually a study that was done by the University of California, San Diego School of Medicine and published online September 6, 2010.  It is interesting to note that although not all the children with autism showed this preference, 100 percent of the children who spent more than 69 percent of their time fixated on geometric images had an autism spectrum disorder.

In a bold announcement, three years ago, from the experts at the Kennedy Kreiger Institute of Baltimore MD in July of 2007, the announcement stated that “New Study Shows Half of Children With Autism Can Be Accurately Diagnosed at Close to One Year of Age”.  Half of the children with a final diagnosis of ASD made at 30 or 36 months of age had been diagnosed with the disorder at 14 months, and the other half were diagnosed after 14 months. Through repeated observation and the use of standardized tests of development, researchers identified, for the first time, disruptions in social, communication and play development that were indicative of ASD in 14-month children. Multiple signs indicating these developmental disruptions appear simultaneously in children with the disorder.  After completing the study, the results were compared three years later with how many of the participants ended up with an autism diagnosis.

“What’s most exciting about these important advancements in autism diagnosis is that ongoing intervention research leads us to believe it is most effective and least costly when provided to younger children,” said Dr. Gary Goldstein, President and CEO of the Kennedy Krieger Institute. “When a child goes undiagnosed until five or six years old, there is a tremendous loss of potential for intervention that can make a marked difference in that child’s outcome.”

Although parents would love to have the ease of mind with a quick blood test to rule out an autism diagnosis, it is not yet a reality. On the other hand, parents of children who have a sibling already diagnosed with autism, should probably be the only ones eager to participate in these early childhood studies at this time, until more promising science is discovered.

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.