On Autism Awareness Day

1 Apr

Today is World Autism Awareness Day. To mark it I wanted to write about a subject regarding autism that is close to my heart.

Intellectual Disability (other wise known as Learning Disability, particularly in the UK). MENCAP say:

There are many different types and most develop before a baby is born, during birth or because of a serious illness in early childhood. A learning disability is lifelong and usually has a significant impact on a person’s life.

Learning disability is not mental illness or dyslexia.

People with a learning disability find it harder than others to learn, understand and communicate. People with profound and multiple learning disabilities (PMLD) need full-time help with every aspect of their lives – including eating, drinking, washing, dressing and toileting.

There are 1.5 million people with a learning disability in the UK. Like all of us, they are individuals who want different things in life and need different levels of support.

New science released states that just over 10% of people with an intellectual disability also have autism. That pertains to 150,000 UK citizens. One of those UK citizens is my autistic child.

On Autism Awareness day please be aware that people with autism often – very often – have other challenges, including Learning Disabilities, that significantly affect their daily lives. I’m aware that governments in the UK, in the USA and in Canada are implementing deep cuts to disability related spending. This does not exclude the most vulnerable members of our society, those with Learning Disabilities. Maybe, as we form an alliance to deal with the situation in Libya, and we come together to help the people of Japan (both things I wholeheartedly agree we should do) we might come together as an international body to make a pledge that on World Autism Awareness Day we will strive to not leave these world citizens behind and we will not take away their very means by which they can help themselves and be helped by others.

Release of the IACC Summary of Advances in ASD Research and Updates on Autism Awareness Month Activities

1 Apr

Below is a copy of the email the IACC sent out today with research advances and updates on Autism Awareness Month activities.

The Interagency Autism Coordinating Committee and Office of Autism Research Coordination are pleased to announce that the 2010 IACC Summary of Advances in Autism Spectrum Disorder Research was released and posted to the IACC website today in conjunction with Department of Health and Human Services celebration of “National Autism Awareness Month” and the United Nations designated “World Autism Awareness Day” on April 2, 2011. The 2010 IACC Summary of Advances is a collection of brief summaries covering the twenty research findings and associated publications that the IACC felt made the most significant contributions to autism biomedical and services research in 2010.

Please feel free to visit the pages below for more information on the IACC Summary of Advances and National Autism Awareness Month activities.

IACC and Department of Health and Human Services information:

-IACC Home Page: http://iacc.hhs.gov/

-IACC News Update on Release of the 2010 Summary of Advances

The 2010 IACC Summary of Advances in ASD Research

-Blog: IACC Chairman, Dr. Thomas Insel, highlights recent progress in honor of National Autism Awareness Month

-Department of Health and Human Services Secretary Kathleen Sebelius’ Statement on National Autism Awareness Month

-Department of Health and Services homepage spotlights Autism Awareness Month: http://www.hhs.gov/

Release of the Department of Health and Human Services’ Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006-FY 2009)

-Centers for Disease Control and Prevention (CDC) Announcement for Autism Awareness Month

Upcoming IACC Full Committee Meeting April 11, 2011, featuring special presentations in recognition of National Autism Awareness Month

Additional Autism Awareness information:

United Nations’ Secretary-General Ban Ki-moon’s Statement Regarding World Autism Awareness Day

We wish everyone the best as we reflect this month on the significance of our work together to improve the lives of people with autism and their families.

Sincerely,

The Office of Autism Research Coordination

Loving Lampposts video clips

1 Apr

Loving Lampposts is a new documentary film by filmaker and autism parent Todd Drezner. Here’s a blurb from their website to give you an idea about the film:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

I put it on my Netflix list (you can too: link) right after reading the review on The Thinking Person’s Guide to Autism and the interview with the director on Neurotribes. Netflix doesn’t carry it yet, but with luck I may have a copy soon. One can purchase a copy as well.

If you are interested in what Todd Drezner has to say, he has the first in a series of articles up on the Huffington Post: Learning to Embrace Autism.

For more on what the film is about, here are a series of video clips the produces have made available:

Opening sequence with director Todd Drezner introducing autism spectrum disorder through his son, Sam

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Understanding autism through “Rain Man” and as described by author of “Unstrange Minds” Roy Richard Grinker

Loving Lampposts Clip #2 from Cinema Libre Studio on Vimeo.

Sharisa Kochmeister, autistic adult with a genius level IQ, and her father, Jay – “I don’t have a disease. I have a disability that causes unease…”

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

Mothers Kristina Chew and Nadine Antonelli initially hoping to find a “fix” for their autistic children

Loving Lampposts Clip #4 from Cinema Libre Studio on Vimeo.

Simon Baron-Cohen, Director of the Autism Research Centre, explains definitions of autism and Asperger’s

Loving Lampposts Clip #5 from Cinema Libre Studio on Vimeo.

About the anti-childhood vaccination movement featuring actress and mother, Jenny McCarthy

Loving Lampposts Clip #6 from Cinema Libre Studio on Vimeo.

Blogger, mother, and activist Kristina Chew shares the joy of watching her son ride a bike

Loving Lampposts Clip #7 from Cinema Libre Studio on Vimeo.

Autistic adult, Dora Raymaker, using a computer to talk, explains how autism affects her ability to communicate

Loving Lampposts Clip #8 from Cinema Libre Studio on Vimeo.

Dr. Paul Offit discusses his involvement in the vaccine industry and the MMR vaccination

Loving Lampposts Clip #9 from Cinema Libre Studio on Vimeo.

Autism supplement in yesterdays Independent

31 Mar

An interesting supplement with contributions from Jane Asher amongst others. Download as a PDF right here.

Sexual abuse allegations by children with neuropsychiatric disorders

31 Mar

The sad fact is that children are often targeted by predators. Disabled children as well. What happens when a child with a developmental disability brings that accusation forward? Are the courts prepared? I hadn’t really thought about it until I read an abstract for a paper just released from a group in Sweden: Sexual abuse allegations by children with neuropsychiatric disorders. I haven’t read the full paper yet, and the abstract isn’t clear to me. One part of the abstract that I found troubling was the lack of psychiatric expertise available in many court cases, which raises the question of how ready are the courts to ascertain the reliability of witnesses with developmental disabilities such as autism, intellectual disability and similar conditions.

I’d be very interested if anyone could point me to sources of good information on these questions, especially within the US.

Loving Lampposts: synopsis and director’s statement

31 Mar

Loving Lampposts, the new documentary by filmaker Todd Drezner, takes a look at autism and parts of the autism communities in America today. After my initial piece on the documentary, I read the press kit again and thought that the synopsis and director’s statements really should be up here on LeftBrainRightBrain.

Synopsis:

As autism has exploded into the public consciousness over the last 20 years, two opposing questions have been asked about the condition: is it a devastating sickness to be cured? Or is it a variation of the human brain — just a different way to be human?

After his son’s diagnosis, filmmaker Todd Drezner visits the front lines of the autism wars. We meet the “recovery movement,” which views autism as a tragic epidemic brought on by environmental toxins. Operating outside the boundaries of mainstream medicine, these parents, doctors, and therapists search for unconventional treatments that can “reverse” autism and restore their children to normal lives.

We meet the ‘neurodiversity’ movement, which argues that autism should be accepted and autistic people supported. This group argues that the focus on treatments and cures causes the wider society to view autistic people as damaged and sick. Acceptance is the better way, but how do you practice acceptance of autism in a world where the very word can terrify parents? And we meet a too often ignored group: autistic adults. It’s these adults who show just how tricky it is to judge an autistic person’s life. Is an autistic woman who directs academic research about autism recovered? What if the same woman has trouble speaking and uses text-to-speech software to communicate? Is an autistic man who lives in his own apartment recovered? What if his mother must hire people to do his laundry and take him out in the evenings?

This wide angle view of autism makes clear what’s at stake in the autism wars. Will we live in a world dominated by autism conferences where vendors hawk vitamins and hyperbaric chambers to parents desperate for a cure? Or will we provide the support that autistic adults need to lead the best lives they can? And can these two worlds possibly co-exist?

Director’s Statement:

One afternoon in August of 2007, I was pondering possible documentary subjects as I brought my son Sam home. We had just finished walking the circuit of lampposts that Sam liked to visit in Prospect Park.

At the time, Sam’s diagnosis of autism was a few months old, and he was about to start at a special needs school in Brooklyn. His diagnosis still felt strange to my wife and me, especially because we didn’t seem to be reacting like many autism families that are depicted in the media. We didn’t feel like Sam had been “stolen” from us. He wasn’t sick. He hadn’t lost any skills. We didn’t think his life was doomed to be a tragedy. Certainly, we were concerned about how best to support Sam, but he was very much as he had always been. It was just that his differences from typical children now had a name attached to them.

My wife had been exploring the autism community on the Internet and had come across a group of autistic adults and parents of autistic children who supported “neurodiversity”–the idea that autism is both a disability and a difference, a natural variation of the human brain. This idea felt right to us, and yet I wondered: Sam did not have many of the most difficult behaviors associated with autism. Would we still believe in neurodiversity if Sam was banging his head on the wall or rocking endlessly in a corner? Was a parent’s view of autism simply a function of how difficult his child was? On that August afternoon, I realized that such questions would be a perfect subject for a documentary, and Loving Lampposts was born.

In the more than two years since, I’ve immersed myself in the world of autism at the same time that the world at large has paid more attention to autism than ever before. Never has a community been less ready for its cultural moment than the autism community. Indeed, there is disagreement about whether autism is a disease, about how to treat it, about whether it is an epidemic, about whether it can be cured, and even about what it is.

These disagreements are on full display in Loving Lampposts. And yet, at the end of the process, I can’t help but be optimistic. I’ve met parents of severely autistic children whose patience, acceptance, and support of their kids are truly inspiring. I’ve met autistic adults–whose voices are too often ignored in the autism debate–who lead rich, full lives even as they struggle with the challenges of their disability. And I’ve seen Sam progress in ways I couldn’t have imagined two years ago.

He’s still profoundly different from other children. But in making the film, I’ve seen that there may be a place in the world for Sam and those like him. I hope that audiences that view Loving Lampposts will see that, too.

Loving Lampposts can be purchased here.

Loving lampposts

30 Mar

Loving Lampposts is a film by an autism parent. I’m waiting for my copy (disclosure: I have asked for a review copy from the producer). In the meantime, reviews have come out by better prepared writers than I. Steve Silberman at Neurotribes has an interview with the filmaker: “Loving Lampposts,” A Groundbreaking Documentary About Autism, Love, and Acceptance. Shannon Des Roches Rosa at The Thinking Person’s Guide to Autism has Loving Lampposts: Accepting and Understanding Neurodiversity. Liz Ditz at I speak of Dreams has A Must-See Movie: Loving Lampposts.

I remember first hearing about this project some time ago when there was just a very sparse website. I had no concept of where the project was going. I was left with a couple of questions then, including: is this going to be a fairly shallow movie about a single quirk in a single autistic? (The idea for the title comes from the fact that the filmaker’s son, well, had a love of lampposts. )

From the reviews (above) and from the materials already available, this looks to be a good movie. A movie which presents some very important questions and gives thoughtful discussion to them. From the Loving Lampposts website:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

Here is a video clip made available:

Loving Lampposts Trailer from Loving Lampposts on Vimeo.

In this short clip we see the wonderful boy, Sam, Prof. Richard Grinker (anthropologist, author of the book Unstrange Minds, and autism researcher), I believe that’s Kristina Chew’s voiceover in a clip of her son Charlie riding his bike, Jenny McCarthy, and parents at a National Autism Association meeting.

Press materials for the book do what they should: they make me want to see the movie. Yes there are the excellent photos of Sam and Lampposts:

But there are also photos of Stephen Shore working with a student:

And a photo of Dora Raymaker:

To point out only a few of the photos.

From the Press Kit, here is the list of participants in the film. It’s a very big and rather diverse group of people.

Featured

Nadine Antonelli and Noah: A resident of Wilmington, N.C. and a medical doctor, Nadine initially believed that she should try to cure her son Noah’s autism. Over time, though, she came to accept his diagnosis and she now works to provide support to other families with autistic children in Wilmington.

Simon Baron-Cohen: The Director of the Autism Research Centre at Cambridge University and a world-renowned expert on autism.

Kristina Chew, Jim and Charlie Fisher: Professors at St. Peter’s College and Fordham University respectively, Kristina and Jim are raising their autistic son Charlie in Cranford, NJ. Kristina is a popular blogger writing about her experiences with Charlie and advocating for neurodiversity.

Paul and Jackie Colliton and Billy: Residents of New York City, Paul and Jackie adopted their autistic son Billy when he was ten days old. He did not begin to speak until age seven.

Todd and Erika Drezner and Sam: The filmmaker, his wife, and their autistic son.

Roy Richard Grinker: A Professor of Anthropology at George Washington University, Richard is the father of an autistic daughter and the author of Unstrange Minds, a history of autism and an examination of how it is treated around the world.

Lila Howard and Lyndon: The 87 year-old mother of a 60 year-old autistic son, Lila raised Lyndon as a single mother at a time when there was no support for parents of autistic children. Ignoring experts who blamed her son’s condition on her and suggested he be institutionalized, Lila helped Lyndon learn to live independently. Today, he lives in his own apartment in New York City, where he has lived for 13 years. Lila remains his primary caretaker.

Jay Kochmeister: The father of Sharisa (see below).

Sharisa Kochmeister: An autistic adult who does not speak, Sharisa was believed to have an IQ of 30 from the time she was two until she turned 13. Almost by accident, her family discovered she could read, and she now communicates with a computer with text to speech capability. Her IQ is at a genius level, and she is a graduate of Denver University who advocates for autistic people.

Eileen Muniz, Gianna, Marz, and Vincent: The mother of three autistic children in Mohegan Lake, NY, Eileen and her husband recently separated.

Paul Offit: A doctor who is the Chief of Infectious Diseases at Children’s Hospital of Philadelphia. He argues strongly against the idea that vaccines cause autism, and is the author of Autism’s False Prophets, which exposes scientifically unsupported treatments for autism.

Dora Raymaker: An autistic adult who communicates using a computer with text to speech capability, Dora is working on her graduate degree in Portland, Oregon. She is the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Johnny and Chris Seitz: An autistic adult and performance artist, Johnny worked with his wife Chris to develop “God Does Not Make Garbage,” a 30 minute show that goes inside the world of autism.

Stephen Shore: Diagnosed with autism in 1964, Stephen was said to be profoundly ill and was recommended for institutionalization. Today, he is a Professor at Adelphi University. He also teaches music to autistic children and lectures about autism all over the world.

Cindy Walsh, Eric, and Robbie: The mother of twin boys with autism in Chantilly, CA, Cindy believes she has “recovered” her children with alternative treatments.

ALSO APPEARING

Elizabeth Avery: An autistic adult living in the Boston area.

Kenneth Bock: A doctor who treats patients with autism using alternative therapies.

Nancy Cale: The co-founder of the organization Unlocking Autism.

Paul Collins: The father of an autistic son and the author of Not Even Wrong, a history of autism.

Doreen Granpeesheh: The Executive Director of the Center for Autism and Related Disorders.

Kristin Holsworth: The mother of an autistic son, Troy.

Peter Hotez: A doctor who is President of the Sabin Vaccine Institute, Peter is the father of an autistic doctor. He says that there is no scientific evidence that vaccines cause autism.

Karen Hubert: A sales representative for New Beginnings Nutritionals, Karen markets vitamins and supplements to parents of autistic children.Dan Joyce: A representative of the organization Autism Speaks.

David Kirby: The author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic.

Estée Klar: The mother of autistic son Adam, founder of the Autism Acceptance Project, and writer of a blog called “The Joy of Autism.”

Robert Krakow: The father of an autistic son a plaintiffs lawyer in vaccine injury cases.

Jenny McCarthy: The celebrity actress is the mother of an autistic son and a leading proponent of the idea that vaccines cause autism.

Arnold Miller: The Director of the Language and Cognitive Development Center of Boston.

Barbara Moran: An autistic adult with a special interest in steam locomotives and old GE refrigerators.

Bob Morgan: The owner of Heavenly Heat Saunas, Bob believes that saunas can “detoxify” autistic children.

James Neubrander: A doctor who treats patients with autism using alternative therapies.

Christina Nicolaidis: The mother of an autistic son and the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Laura Rose: The mother of a “recovered” autistic son, Jason.

Ralph James Savarese: Ralph and his wife adopted a six year-old profoundly autistic boy who had been severely abused. Today, although Ralph’s son cannot speak, he is a straight A student in an Iowa high school.

Bill Schindler: The director of the Mild Hyperbaric Therapy Center, Bill works with parents who treat their children’s autism by giving them treatments in hyperbaric chambers.

Phil Schwarz: The father of an autistic son and an advocate of neurodiversity.

Kassiane Sibley: An autistic adult and advocate for neurodiversity.

Autumn Terrill: An expert in special education who works with Billy Colliton.

Anju Usman: A doctor who treats patients with autism using alternative therapies.

Robert MacNeil returns to PBS NEWSHOUR to report on Autism Today

30 Mar

The PBS Newshour is one of the premiere news programs in the US. Many will remember it as the MacNeil/Lehrer NewsHour, for Robert Macneil and Jim Lehrer. Robert MacNeil is returning from retirement to present a series of episodes on autism for autism awareness month.

Aside: wow, has it really been 16 years since Robert MacNeil retired?

The press release is shown below:

Robert MacNeil returns to PBS NEWSHOUR to report on Autism Today

6-part series airs during Autism Awareness Month

April 18 – 26, 2011

ARLINGTON, VA (March 29, 2011) – Autism – it’s a developmental disorder that has become increasingly prevalent, affecting 1 out of 110 American children. Despite years of study, little is known about its cause and access to treatment varies. Meanwhile, hundreds of thousands of American families hungry for answers struggle to care for the unique needs of children with the disorder. Among them, Robert MacNeil, co-founder of the PBS NewsHour and grandfather of Nick, a 6-year old boy with autism.

“I’ve been a reporter on and off for 50 years, but I’ve never brought my family into a story … until Nick,” MacNeil said, “because he moves me deeply.”

MacNeil and producer Caren Zucker tell the story of Autism Today in a 6-part broadcast series beginning Monday, April 18, 2011 and a robust online component where viewers can join the conversation. Ms. Zucker has produced many stories on autism and is the mother of a 16-year old son with autism.

Monday, April 18 An introduction to Nick and autism as a whole body experience: MacNeil brings viewers along on a visit with his daughter and grandson Nick in Cambridge, Massachusetts, to see how autism affects the whole family, including his 10-year-old sister, Neely. Nick experiences autism not just as a disorder in brain development but also as physical ailments affecting the whole body.

Tuesday, April 19 Autism Prevalence: Why are the numbers of children with autism increasing? At the UC Davis MIND Institute in Sacramento, California, MacNeil sees the wide range of different behaviors that comprise the autism spectrum. Anthropologist Richard Grinker argues that the rising numbers of children with autism is explained because conditions previously given other names, like mental retardation, are now included in the autism spectrum. Scientist Irva Hertz-Picciotto says the wider definition only partly explains the increased prevalence, pointing instead to a variety of environmental factors.

Wednesday, April 20 Autism Causes: The rise in autism numbers has caused a surge in research to find the causes. For the latest thinking, Robert MacNeil speaks with four leading researchers: Dr. Gerald Fischbach of the Simons Foundation, Dr. David Amaral of the MIND Institute, Dr. Martha Herbert of Harvard University and Dr. Craig Newschaffer of Drexel University.

Thursday, April 21 Autism Treatment: Although children with autism see doctors periodically, they go to school everyday. It is the school system that bears most of the burden of treating children with autism because treatment means education. MacNeil visits two schools in New York – a public school in the Bronx teaching 700 children with autism and a charter school created in Manhattan as a model of possibilities in educating children with autism. With only 30 students, it can use one-on-one teacher/student ratios employing intensive Applied Behavioral Analysis – the gold standard treatment for autism.

Monday, April 25 Adults with Autism: Although federal law mandates educational services for children with autism, there are virtually no services when they become adults. MacNeil profiles Zachary Hamrick in Mahwah, New Jersey, about to turn 21. As his family contemplates the uncertain future now facing hundreds of thousands of young people like him, his parents ask themselves, “What will happen when we die?”

Tuesday, April 26 Autism Policy: The NewsHour series ends with a discussion of the public policy issues raised in the series, including the enormous discrepancy in the quality and availability of services for children and future adults in what the federal committee that determines research priorities for autism now calls a “national health emergency” with a panel of experts including: Dr. Thomas Insel, Director of the National Institute of Mental Health, Catherine Lord, Professor of Psychology, Pediatrics and Psychiatry at the University of Michigan, Ilene Lainer, Executive Director of the New York Center for Autism – a private advocacy group, and John Shestack, a Hollywood producer and the co-founder of “Cure Autism Now” a former advocacy group.

PBS NEWSHOUR will host an online content hub that will offer easy access to video of all the pieces in the series, as well as web-only features that are part of Autism Today, including:

§ First Look Online: In a brand new online-on-air cross promotion, check the NewsHour’s website after each night’s broadcast during the week April 18: We’ll post the next chapter in the Autism Today series online by 7pm ET.

§ Autism 101 – A primer on autism, how it’s diagnosed, the spectrum of disorders, and available resources. We’ll also look at the costs of austim, through the lens of the families profiled in the series and others.

§ The Story of Donald – A new look at Caren Zucker and John Donvan’s profile of the first child diagnosed with autism as reported in The Atlantic.

§ Live Chat with Experts – Viewers can ask their questions directly to the experts and doctors profiled in the broadcast segments via live text chat moderated by PBS NEWSHOUR digital correspondent Hari Sreenivasan.

§ Ask Robin MacNeil – Hari Sreenivasan will preview the series with Robin MacNeil in a special interview on the Rundown news blog. MacNeil will also answer viewer questions after the series concludes.

§ Join us on Twitter, YouTube and Facebook: We want to hear how you or those you know are coping with autism. Use the Twitter hashtag #autismtoday to ask questions or join the conversation on the series.

PBS NEWSHOUR is seen five nights a week on more than 315 PBS stations across the country and is also available online, via public radio in select markets and via podcast. The program is produced by MacNeil/Lehrer Productions, in association with WETA Washington, DC, and THIRTEEN in New York. Major corporate funding for The NewsHour is provided by Chevron, Bank of America and Intel, with additional support from the William & Flora Hewlett Foundation, the Corporation for Public Broadcasting and public television viewers.

Wired: iPads Are Not a Miracle for Children With Autism

30 Mar

Wired has a piece up that purports to go against the hype on the iPad: iPads Are Not a Miracle for Children With Autism. It’s a provocative statement (even he says so). I wanted to say that it is a big strawman. For the most part the hype isn’t so big as to place the iPad into “miracle” status. But, then again, consider these pieces:

A Cure for Autism? Apple’s iPad has an App for That

Another piece had a title that stuck in my mind: Could the iPad be a Cure for Autism? When I searched for it, I found that the title had changed to
Could The iPad Be Used To Help Autistics?

Wired makes good points:

While there are some apps that are more specific to use with children with autism (like AAC apps), all apps can provide developmental experience depending on how they are used and the child’s own developmental trajectory and interests. You can’t have a “Top 10 Autism Apps.”

But to bring this back to the start, is the iPad a “miracle” for autistics (children or adults)? Depends on your definition of miracle, I guess. Is it a cure? No. The iPad and the iPod touch are excellent pieces of technology and have a lot to offer some people with disabilities. I think that I will paraphrase Shannon Rosa: the iPad is a force for good. It isn’t magic. It isn’t a cure. It is for many a step towards greater independence. Is a step towards greater independence a “miracle”? I think so. I take my miracles big or small.

Social-sexual education in adolescents with behavioral neurogenetic syndromes

30 Mar

A recent paper abstract I read brought up a very important topic which I don’t see discussed much: sex education for adolescents with developmental disabilities. I don’t know how good the paper itself is, but I agree with the conclusion: “Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. ” On one level I don’t want to think about sex and my kid. But I also have run into a belief that sex isn’t a topic to consider for people with developmental disability and autistics in particular. Perhaps I am naive, but I don’t see this as a good approach. I think sexuality is too important a topic to leave unaddressed. The discussion is going on. Just rarely in the parent-oriented online world.

Isr J Psychiatry Relat Sci. 2010;47(2):118-24.
Social-sexual education in adolescents with behavioral neurogenetic syndromes.

Plaks M, Argaman R, Stawski M, Qwiat T, Polak D, Gothelf D.
The Behavioral Neurogenetics Center, Feinberg Department of Child Psychiatry, Schneider Children’s Medical Center of Israel, Petah Tikwa, Israel.

Abstract
BACKGROUND: Adolescents with developmental disabilities have unmet needs in their sexual and social knowledge and skills. We conducted a sexual social group intervention in adolescents with neurogenetic syndromes, mainly with Williams and velocardiofacial syndromes and their parents.
METHOD: Ten adolescents with neurogenetic syndromes and 14 parents participated in a Social Sexual Group Education Program. The program was delivered in 10 biweekly sessions to the adolescents and their parents separately.
RESULTS: The focus of psychoeducation in both groups was the adolescents’ self-identification, acceptance of the developmental disability, independence, establishment of friendship and intimate relationship, sexual knowledge and sexual development, and safety skills. Change in independent activities of adolescents and in their concept of “Friend” was measured.
CONCLUSIONS: Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. These programs should start already before adolescence and follow the children into young adulthood.

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