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By Marcela De Vivo, mother of a child with a severe disability and freelance writer who works with Oltarsh law firms.  She writes on immigration law, health and special education law and inclusion. 

For any family, providing the best care and support for an autistic child presents numerous challenges. In a family of immigrants, dealing with autism can be overwhelming, from diagnosis to treatment. In particular, immigrants may lack access to a secure healthcare network, making solutions seem inaccessible. Here are some things to think about:

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Image Courtesy of Christian Briggs/Wikimedia Commons

Diagnosis and denial

Within some cultures, there simply is no frame of reference for a problem such as autism, so immigrants can sometimes not see their children’s symptoms or resort to inappropriate coping mechanisms.

Signs of autism, such as poor social skills or repetitive physical ticks, can be registered as stubbornness or a cause for shame for those who lack the education to understand that their child has a mental disease. As a result, parents might punish their child or pretend that the symptoms are not there. To make matters worse, immigrant parents who recognize that there is an obvious problem can be misinformed about the implications of autism. Some families, for example, think that if they are “caught” with an autistic child, they could be deported (which, in some countries, is not an unreasonable fear).

In some isolated cases, parents have failed to notice any symptoms whatsoever. In others, frustrated fathers have abandoned their autistic children, in part because they did not have an adequate concept of mental illness and may even think the problem is their fault.

They may keep the child out of the public eye, for instance, not wanting to incite neighborhood gossip. Among immigrant mothers, being a single parent can be even more challenging when rearing a special-needs child, since she may lack the documentation, status or money to provide appropriate therapy.

Cultural barriers to treatment

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Image Courtesy of Tim Vickers/Wikimedia Commons

Since autism is an affliction that affects our relationship to language and communication, getting treatment for the diagnosis is difficult in a multi-lingual household. If a specialist must rely on a translator to interact with a child—as well as the parents—he or she may miss some of the nuances of the child’s dialogue. A lack of understanding of idiom or regional body language might cause an inaccurate diagnosis or stand in the way of therapy.

On top of strictly linguistic barriers that may exist between doctors and immigrant families, there can be cultural barriers as well.

On the doctor’s side, the fact is that he or she may be making all judgments based on a body of knowledge that does not reflect many world cultures.  While over six million culturally diverse children in the U.S. have communication disorders, such as autism, almost all of studies done on autism have been conducted with European-American families

It is a strong likelihood that the data a doctor relies on may have a cultural skew. Furthermore, many American doctors may not have an understanding of certain taboos and customs of communication, potentially offending or confusing the family and making open dialogue more improbable.

Finally, many cultures don’t have a true concept of mental illness; this often makes it difficult to provide solutions. Islamic parents, for example, may think that not to raise their child as they would a normally-functioning child may be an insult to their god, therefore, they forsake treatment.

To overcome these difficulties, immigrant families must make sure language and cultural differences are minimized. The ideal scenario would include a doctor who is a native speaker or highly fluent in the child’s language. As this is not always possible, it’s essential to have a translator who is not only appropriately bilingual, but also savvy to concepts in mental health and the mores of the child’s culture.

Its important that at least one person is an insider within both cultures to make sure that the diagnosis is not based on a misunderstanding and that the reasons for treatment can be explained in context. With adequate language and cultural mediation, autism need not be yet another unneeded stressor for immigrants.

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By Nick Lombardi, ASF intern

Nick Lombardi, recently recognized by the town of Greenburgh for his service to the autism community, has a younger brother with autism.

At five years old it was explained to me that my brother was going to be different.  I didn’t understand what different meant – to me he was just my three year old brother. I played with him and understood him perfectly even though he didn’t speak. He was my buddy.  

I remember how taking Joey anywhere became a major operation of enormous work and planning.  Once we arrived the challenge didn’t stop there, Joey took off his shoes and ran like the wind. The danger and stress of losing Joey was constant and so were the looks of disapproval, irritation, and sheer disgust.
My family was scolded – “Why can’t you control him?” often while we were ineffectively trying to peel Joey off the ground or holding on to him for dear life.  No matter how many times we tried to explain, the criticism never stopped. This hurt our family’s core and it hurt Joe too, it was right there on his face.
My frustration grew – others shouldn’t judge Joey.  I was nine years old when I realized my brother needed a voice, and I had to give it to him.

I designed a pin that would be clear and useful.  My message was simple and straightforward, “I’m not misbehaving I have autism please be understanding.”  I started with 6 pins.  Joey wore them everywhere and like magic, they worked!  People looked at Joey, saw the message and the tone changed.  HE HAD A VOICE!!  
Other families needed them.  I started selling them to pay for the cost.  I shared my pins and now they are in two languages and sold all over the world. I have trademarked it and have my own Facebook and web page ( www.autismbutton.com  and www.facebook.com/autismbutton?ref=hl) and even expanded my line with patches and tee shirts.  

I speak at many autism benefits and schools, have appeared on TV news programs and in newspapers, been listed as one of autism’s  advocates of the year with Hilary Clinton and hosted a web TV show called Siblinghood. For years I have volunteered with special needs children and been a mentor for siblings.
Joey has changed my life forever.  Joe taught me the meaning of responsibility, passion, determination, and unconditional love.  He gave me the true gift of realizing that we can’t take anything for granted.  Not even a spoken word.  I’ve also learned that I can make a difference.   

Whenever I get tired or frustrated, I think of Joey, how hard it is for him and it keeps me focused.  I’m not sure how you can thank someone for giving you all of that.  In return, I just love him and promise to always give him a voice.

I know and understand the struggles that a sibling of someone with autism goes through. The worst feeling is loneliness; the feeling that not only does no one understand you, but the feeling that there is nothing you or anyone can do to help. That, thankfully, is not at all the reality. For me, the best way to get your feelings out and find ways to deal with your problems is by going to group therapy or simply finding someone you trust to confide in and talk to about things. Parents, as much as they love us, are not the first people we run to. I felt that my parents were already overwhelmed with Joey. I couldn’t possibly put the burden of dealing with my problems on their shoulders as well. I will admit that it was a little intimidating at first.  I didn’t know what to expect. At age eight, I didn’t really talk about Joey with anyone my age who wasn’t a cousin or very close family friend. For my friends at school, autism wasn’t exactly the most frequently used word in their vocabulary.

I remember walking into my first group meeting; I was excited but scared out of my mind too. I didn’t know what the other kids would say or think about me once I told them stories about Joey and my family. However, soon enough after doing our opening introductions and starting on our first problem, I realized that this was the place for me. Everyone could relate to me and I to them. It was the first time that I truly didn’t feel isolated or judged or like I was “the kid with the weird brother.” I felt right at home with the stories of public tantrums and struggles at home. It gave me a safe place to vent and talk about the feelings that I couldn’t ever say to my parents. It was amazing; all of those feelings that I had cooped up inside of me were now in the open, in a safe place where no one thought less of me because of it.

If I have any advice for parents it is this –  make sure you attend to the needs of all of your children. Now of course I’m not a parent and I salute the efforts of parents of children with autism and other disabilities. It’s a whole level of love and commitment that can’t possibly be measured. With that being said, sometimes the needs of the “typical sibling” (a word I hate to use) can be overlooked. I’m not saying that there is a shortage of love and commitment. In fact, there is so much love that it makes it hard for some siblings to talk to their parents. We see the struggle that they go through and can’t possibly imagine putting any more pressure on them. The best thing that parents can do is ensure your son or daughter that they are free to express their feelings, even the ones that are sometimes difficult to hear. They need to feel safe and know that if they say something they won’t be judged or punished. For some siblings, however, talking to a parent directly is too hard and group therapy or even one-on-one therapy becomes the best option.

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Pre-order or purchase the paperback edition of The Invisible Gorilla on or before June 11, 2011 to make a $5 donation to ASF. If ASF is selected most often at the end of the promotion, we will receive an additional $2,000 donation!

The book, which examines the illusion of cause, or our tendency to see casual patterns where none exist, features a special chapter on the vaccine-autism controversy, and includes quotes and opinions from ASF board member Dr. Paul Offit.

To support ASF, here’s what you need to do:

Step 1: Purchase the paperback edition

Pre-order or purchase the paperback edition of The Invisible Gorilla on or before June 11, 2011. You can purchase from your local bookstore or online via the links provided on the authors’ website (http://www.theinvisiblegorilla.com/charity_buypaperback.html). After buying the book, return to the authors’ website and proceed to Step 2.

Step 2: Provide your information and select Autism Science Foundation to receive the donation

Use this form to provide your information. You will need to provide your name, email address, and city/state. You will also need to know the name of the store where you purchased the book, the date you bought it, and the exact price you paid. Finally, indicate that you would like your donation to go to ASF in the drop-down and then hit “submit.”

**Make sure to complete step 2 and select Autism Science Foundation, otherwise, the proceeds will NOT BENEFIT  ASF to support critical autism research.**

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Congratulations to Megan Savage , who won Leo’s iPad Raffle!

Thank you to everyone who helped to raise $890! Your contributions will go to fund outstanding autism research.

A very special thank you to IMFAR Stakeholder award winner Shannon Des Roches Rosa, who set up the raffle.

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Help support ASF through Leo’s iPad Raffle. Donate to be entered to win an iPad with 10 free apps!

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(Press Release) – New Data Shows Half of All Children with Autism Wander and Bolt from Safe Places

Interactive Autism Network releases findings on critical safety issue, launches new research survey on pregnancy 

Today, the Interactive Autism Network (IAN), http://www.ianproject.org,  the nation’s largest online autism research project, reveals the preliminary results of the first major survey on wandering and elopement among individuals with autism spectrum disorders (ASD), and announces the launch of a new research survey on the association between pregnancy factors and ASD. The wandering and elopement survey found that approximately half of parents of children with autism report that their child elopes, with the behavior peaking at age four. Among these families, nearly 50% say that their child went missing long enough to cause significant concern about safety.

“This survey is the first research effort to scientifically validate that elopement is a critical safety issue for the autism community,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute in Baltimore, Maryland. “We hope that advocates and policy makers use this research to implement key safety measures to support these families and keep these children safe.”

In just three weeks, more than 800 parents of children with autism completed the survey. The findings highlighted below summarize the compelling results and crucial safety concerns identified by parents. For the preliminary findings in their entirety, read the IAN Research Report:  Elopement and Wandering.

Dangers of Elopement

The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death:

  • More than one third of children who elope are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing
  • Two in three parents report their missing children had a “close call” with a traffic injury
  • 32% of parents report a “close call” with a possible drowning

Effect of Wandering on Families

  • Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
  • 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
  • 40% of parents had suffered sleep disruption due to fear of elopement
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings

Resources, Support for Families 

  • Half of families with elopers report they had never received advice or guidance about elopement from a professional
  • Only 19% had received such support from a psychologist or mental health professional
  • Only 14% had received guidance from their pediatrician or another physician

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(March 21, 2011)  The Autism Science Foundation, a not-for-profit organization dedicated to funding autism research, today announced the recipients of its annual pre and post doctoral fellowships.  In all, $220,000 in grants will be awarded to student/mentor teams conducting research in autism interventions, early diagnosis, biomarkers, and animal models. This funding level represents a 22% increase over last year’s training fellowship grants.

“We are thrilled to be increasing our funding in only our second year of operations, and to be supporting such high quality grants”, said Autism Science Foundation co-founder Karen London.  “Outstanding research is the greatest gift we can offer our families. We are so grateful to all our donors and volunteers who have come together to support autism research.”

The following new projects have been selected for funding:

Post Doctoral Fellowships:

Dr. Jill Locke and Dr. David Mandell: University of Pennsylvania
Implementing Evidence-Based Social Skills Interventions in Public School Setting

Several successful social skills interventions for children with autism have been developed for use in school settings. Children who receive these interventions from a research team show marked improvements in friendships and playground behavior, but these gains usually fail to maintain because the school staff do not continue the intervention after the research study ends. In this study, we will modify one of these social skills interventions that was designed for skilled clinicians to use so that it can be used by school aides to improve the social involvement of children with ASD in schools. We then will test the intervention to see whether the intervention is as successful when aides deliver it. Training aides will increase children’s opportunities to practice social skills with their peers at school and increase opportunities for generalization and maintenance of skills, since aides are so frequently present during social periods such as recess and lunch.  If successful, this project will provide school districts with a cost-effective, easily implemented, and sustainable program that improves socialization in children with ASD within school settings. Once aides are trained, schools will have a built-in mechanism for continued success that will help many children with ASD and their families address the social challenges associated with ASD.

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