What in the World is Going On – December 2013 Edition

Last month, Suzanne Wright of Autism Speaks created an international controversy on her Call to Action plan to Washington.  Suzanne Wright is the co-founder of Autism Speaks, one of the largest autism organizations in the world. Autism advocacy is a big part of what they do.

Ms. Wright’s Call to Action painted a bleak picture of what life with autism is like for families. Although not a parent of a child with autism, she described autism as a national emergency. She said, “Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse. These families are not living. They are existing.”

Jon Elder Robison, adult with Asperger Syndrome, resigned from the Autism Speaks board. He wrote an eloquent blog post telling everyone why he resigned. “If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion. Until then, it’s time for me to bow out.”

I also liked this dad’s response to Ms. Wright’s statements. “Not living? Merely existing? Who is Ms. Wright to make a blanket judgment about millions of people touched by autism? What does she know about my family?” Read his poignant and heartfelt blog post here.

On the pharmaceutical front, Johnson & Johnson and its subsidiary Janssen has agreed to pay the U.S. government $2.2 billion to settle cases in which the government has alleged that the company and its subsidiaries promoted powerful psychiatric medications for uses not approved by the Food and Drug Administration and offered financial kickbacks for physicians who prescribed those medications frequently.

The case involves 3 medications – anti-psychotic drugs Risperdal and Invega and the heart-failure drug Natrecor. “Until late 2006, the FDA had not found Risperdal safe and effective for use in any children and had warned Janssen repeatedly against promoting the medication for pediatric use. The FDA maintained that Janssen promoted Risperdal as safe and effective in treatment of attention deficit and hyperactivity disorder, obsessive-compulsive disorder, oppositional defiance disorder and autism despite ‘known health risks to children and adolescents’ taking such medications. Rapid weight gain and metabolic disturbance have been seen in many young patients taking drugs in the same class as Risperdal.”

Risperdal has been prescribed for people with autism with mixed results. This case shows us that we have to be diligent when it comes to medications and do our own research. The side effects of medications can be negative and detrimental to our children’s health.

A new study by researchers at the UC Davis MIND Institute found “children with autism experience gastrointestinal (GI) upsets such as constipation, diarrhea and sensitivity to foods six-to-eight times more often than do children who are developing typically, and those symptoms are related to behavioral problems, including social withdrawal, irritability and repetitive behaviors.”

Understanding the impact of GI problems could lead to more effective and appropriate autism treatments, decrease GI difficulties, and in turn have the potential to decrease problem behaviors. “The GI problems they experience may be bidirectional,” lead author Virginia Chaidez said. “GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems. One way to try to tease this out would be to begin investigating the effects of various treatments and their effects on both GI symptoms and problem behaviors.”

Because girls exhibit different symptoms than boys with autism, girls are going undiagnosed. Figures show that boys are nine times more likely to develop autism than girls. It was believed this was due to genetics. Experts now believe girls hide certain symptoms – such as being able to recognize people’s emotions as happy, sad or fearful.

Dr. Kothari, whose research is published in the Journal of the American Academy of Child and Adolescent Psychiatry, said: ‘The lack of association between social communication difficulties and facial emotion recognition in girls suggests girls might learn to compensate for facial emotion recognition difficulties.’

Girls are more prone to depression and eating disorders if they go undetected. More observation and study is needed in order to understand how autism manifests itself in girls as opposed to boys. To read more on this research, click here.

Plaza Familia did a post about the best math apps for those with special needs. What you may find helpful about this site is it is in both English and Spanish. Although not a dedicated autism or special needs site, the authors do touch on a wide range of educational and family-related topics that apply to all families.

The blog A Quiet Week in the House is written by Lori who is an adult in her 40’s with Asperger Syndrome. Her story is an interesting one because in 2009 her son was diagnosed with autism, the following year her father was diagnosed with Asperger Syndrome, and then Lori was diagnosed. I discovered her writing when I was researching prosopagnosia, or face blindness. Her recent blog post highlighted the signs of prosopagnosia. Lori covers parenting topics, being an adult on the spectrum, and Tourette’s parenting. She writes well and her posts are articulate and well thought out.

Although not a new publication, Walk Awhile in My Autism is a book that deserves praise and attention. The two authors have created activities that put neurotypicals into the shoes of someone with autism. The activities could be used at school, in community settings, and could potentially be a great way to train staff. Temple Grandin says, “The main thing is all the exercises people can do so teachers, parents, and others can experience how a person with autism senses and feels the world.”

Tony Attwood has a new book out entitled From Like to Love for Young People with Asperger’s Syndrome (Autism Spectrum Disorder): Learning How to Express and Enjoy Affection with Family and Friends. If your child rarely shows you that he or she loves you, it can be profoundly distressing. This is the experience of many parents of children with an autism spectrum disorder (ASD), and most fear that it reflects the truth. In fact the truth has generally more to do with the difficulty that young people with an ASD have in communicating like or love for someone physically and verbally. They may not know how to go about expressing themselves in these ways, or understand that family members and friends can find the absence of demonstrative affection upsetting.

This book addresses this issue in practical terms. It provides carefully designed activities for parents to work through with their children to help them to understand and express affection. Their child will learn to identify his or her own and others’ comfort and enjoyment range for gestures, actions and words of affection and the different ways to express feelings for someone, appropriate to each relationship and situation. The activities are simple, straightforward, and very carefully structured, so that they can be undertaken at the pace that works for the individual family.

The book also guides the adult through the challenges faced by the child, leading to greater understanding and confidence in their relationship with their child, and increased ability to nurture the child’s ability to form engaged relationships and friendships with others.

These are the highlights of what in the world is going on in autism for December 2013.

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