Archive for October, 2010

My child is nonverbal – what are some intervention methods that might help my child communicate better?

October 29, 2010 11 comments

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and will address the other themes we received in this weekly post.

Many individuals with autism do not use spoken language to communicate.  It is estimated that approximately 25% of individuals with ASD are nonverbal.  Despite early traditional approaches such as speech, occupational and behavioral therapy, some children still remain unable to communicate their wants and needs.  A recent study found that some children with ASD do not develop spoken language until after the age 5 years.  On-going speech and language intervention can promote the development of speech in nonverbal children who are of school age.  In addition, there exist specific intervention approaches that can be helpful for some individuals, such as PROMPT, an intervention approach especially designed for children with motor-speech disorders.

Speech and language specialists recommend a variety of alternative and augmentative communication (AAC) devices for individuals who are nonverbal.  A commonly used system is the PECS picture exchange system (PECS).   PECS has been used with individuals with ASD of all ages.  One advantage is that it doesn’t require expensive materials, relying on a set of picture symbols that can be used to make simple or complex requests and other statements.  The symbols are typically placed in a communication book.  After the child or adult learned to make spontaneous requests.  The individual can then learn to construct sentences.  . Other AAC methods include the following:

  • Gestures and sign language
  • Pencil and paper
  • Communication books or boards
  • Keyboards and other electronic devices

The iPhone and iPad are being used as ACC devices. These new interactive technologies have invited a wave of new applications to benefit individuals on the spectrum, especially those who are nonverbal.  Many of these applications incorporate the advantages of the PECS system of offering a stock of visual images as well as the ability to personalize using one’s own images.  Two of the most popular programs are Proloquo2go and iPrompts.

Although the use of these devices have not been tested in rigorous clinical trials, those trials are underway and early anecdotal reports are positive.  Connie Kasari, PhD. (UCLA) leads an Autism Speaks’ funded clinical trial comparing two different interventions for young nonverbal individuals.  Having previously used traditional keyboarding devices, Dr. Kasari has found that the iPad with speech generating software offers a great alternative to expensive AAC speech generating devices.  However Dr. Kasari also adds, that these devices “Work best in therapy sessions with a child who has not yet figured out that they can surf the web with it, too!”

Of course, this potential distraction is also an advantage. These new applications  are hosted on the multifunctional iPhone and iPad platforms.  HandHoldAdaptive, the creators of iPrompts, have launched AutismTrack, a new portable journaling tool that enables caregivers to track therapies, medication and behavior.  Developers continue to create new apps to address the challenges of those on the spectrum, making these new tools even more powerful for managing the everyday needs and desires for individuals on the spectrum.

Read a blog from Dr. Kasari about nonverbal autism and more information about Autism Speaks investments in nonverbal autism.   For more information about ACC, the following websites may be useful:

ACC Institute:

International Society for Augmentative and Alternate Communication

To locate a speech-language pathologist, visit

In Their Own Words – What Does Autism Mean to You?

October 29, 2010 6 comments

Derrick is the father of two wonderful children, one of which, Lucas, as autism. He is a devoted member to the autism community, and has been involved in activity for years. He and his wife, Sandrine, created the South Carolina Autism Services Directory to help parents locate services available for autism, and The LUCAS Network (Loving Unconditionally Children with Autism Support). He is also the Family Services Liaison for Autism Speaks in South Carolina. Derrick succeeded in getting two buildings in South Carolina to “Light It Up Blue” this year, and has worked to light up the BMW Zentrum Museum2011  Campaign.

What does autism mean to you?

What would your answer be if someone asked you this question? I guess it would depend on how you have been personally affected by autism. But instead of focusing on all the different answers someone else would possibly give, let me answer the question from my point of view.

Autism means so many different things to me. It is at the same time my salvation and my tragedy.  Autism came into my world back in October of 2001 when my son was diagnosed.  At that time, it was the end of all the dreams I had in my head of what my son might become.  It was a time of entering into an unknown world full of alien language and signs I could not read or understand. I entered into a completely new culture in which I had to learn by trial and error. Living in France and Austria in my early 20’s did nothing to prepare me for this new world.  The movie Rainman was so far from my reality. Every parent I met that had a child with autism had a child that was so different from mine. My wife bought books to read and asked me to read them as well. I would pick them up and start and then put them down again. I could not wrap my head around what I was reading. It was as if it was written in Chinese. I just could not accept this world that I had been thrown into and was being forced to be a part of. For two years I fought and refused to accept this thing called autism. I could not accept being told that my son would never talk or get a job or drive a car or go to his high school prom. I was tired of being told what my son would never do. How dare they! How the Hell could they know what he would become! Then finally, depression set in and although I tried my best to hide it from my wife and family, I gave up for a few months. I think that Lucas could sense the despair because just when both his mother and I would think he would never do this or that, he would do it the next day to show us that he could.  After about a year of ABA we finally started seeing some signs of progress. Slowly at first but then he would have a burst, as we would call them, of progress. I could see the real Lucas struggling to come out from behind the veil of autism and I saw for the first time my son, his desire to be seen and heard by his father and to have his father fight for him as he was fighting for himself. From that moment on, my way of viewing autism changed. It went from being my worst nightmare to my saving grace.  As I have watched my son grow in all senses of the word, I have seen a child so full of love, so innocent, and so strong of will attract one person after the other into his life and the impact has been enormous for all of us who have been lucky enough to have him in our lives. To know Lucas is to love him. His strong will to succeed has transformed me into a father that will have the same will and determination to advocate for Lucas and others like him until the day I die. Now, although I still wish my son did not have autism, I cannot imagine my world without Lucas as he is. Autism to me is that one piece of the puzzle that you know is there but have not yet found; but you know when you do find it and complete that puzzle, you will have the most beautiful and complete picture you have ever seen. For me and Lucas, together we are putting those puzzle pieces in place one piece at a time and although we are currently only half way to finishing that picture, together we will continue to put the puzzle pieces into place.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – Friday, 10.29.10

October 29, 2010 1 comment

Phony autism specialist sentenced to three years in prison (Stamford, Conn.)
The New York woman who used forged credentials to fleece more than $150,000 from families with autistic children and the Norwalk school system was sentenced to three years in prison Thursday morning. Read more.

Autism SpeaksTM Launches Puzzlebuilder, the First-of-Its-Kind Social Network Driven Fundraiser to Help the One in 110 Children Struggling With Autism Spectrum Disorders (Marketwire)
Autism Speaks™, North America’s largest autism science and advocacy organization, today announced the launch of Puzzlebuilder, the first-of-its-kind social network driven fundraising campaign that enables people of all ages to help solve the puzzle of autism — the fastest-growing serious developmental disorder in the U.S. Anyone can become a Puzzlebuilder by uploading their favorite photos to create their own digital puzzle or by buying a piece of a participating celebrity, friend or family member’s puzzle. Each puzzle piece is $10 and all funds benefit Autism Speaks. The campaign launches October 28, 2010 and will run through the end of the year. Read more.

Candidates want more focus on early childhood education (Lansing, Mich.)
Education is poised for some big changes and, as Michigan Public Radio’s Laura Weber reports, teachers and parents are wondering if Michigan will be ready for them. Read more.

UC Davis goes all in against autism (Sacramento Business Journal)
Sixteen years ago, at the age of 2, our firstborn began to lose his language, imitative ability and connection to the world. Read more.

Anger over cuts to speech therapy service for autistic children (UK)
The family of a severely autistic six-year-old are angry that a service which helps him communicate has been cut by the NHS. Notts Community Health say it will only provide speech and language therapy services for children with autism until the age of six. Read more.

The Most Challenging Aspect of a Job is Keeping it: The Importance of Flexibility in the Workplace

October 28, 2010 5 comments

Rebecca Malnisky is the Executive Director, Ken’s Krew Inc., an organization that helps individuals with autism function at their highest levels in jobs at The Home Depot and CVS Caremark pharmacies.

It you ask any of the 125 Ken’s Krew, Inc (KKI) participants currently working in The Home Depot or CVS Pharmacy, “What is the most challenging part of your job?”, you might get any range of responses, from dealing with difficult customer questions, having hours cut during a slow season, or becoming familiar with where all the products are in the store.  If you ask me what the most challenging piece of a job is for our participants, I would say, keeping it.  When it comes to working in retail, the most important characteristic of a successful worker is flexibility, a word that is often not synonymous with the work skills of an individual on the autism spectrum.  Nevertheless, with appropriate support, many of our young adults diagnosed with autism are rising to the occasion and demonstrating an impressive ability to adapt based on a strong desire to obtain and maintain employment.

In today’s difficult job market, our participants are competing for job with college graduates and individuals that have years of retail experience.   KKI vocational trainers are dealing with this by ensuring that all of our candidates understand that every employee needs to flexible.  Are you open to working after 1pm?  Are you willing to work in a department that you are not familiar with?  Do you have a desire to learn how to use new equipment, like a cardboard bailer?

Additionally, especially within The Home Depot, stores can be loud, distracting, and ever changing.  Again, not exactly characteristics that make for a strong job match when job developing for an individual diagnosed with autism.  However, KKI has trained several young adults who were initially characterized on their KKI applications as “structured” and “rigid”, who have been extremely successful on the job, making incredible contributions to the productivity and corporate culture at their respective stores.

For example, take Thomas Brown, who just earned his second “Homer Badge” for exceptional customer service.  During training, Thomas stated that he was very intimidated by the uncertainty of what a customer might ask and whether or not he would be able to supply the customer with an adequate response.  As a result, a KKI vocational trainer focused a significant amount of time on decreasing Thomas’ frustration level and increasing his self-confidence.  Thomas and his job coach role played, so that Thomas could learn to say “I’m not sure.  I’m in training, but let me get someone to help you” dozens of times during each shift.  Additionally, Thomas’ vocational trainer offered generous praise, practiced frequent customer service scenarios and ensured that Thomas identified a “buddy” within his department during each shift.

Besides discussing the inevitably ever changing environment of retail, vocational trainers provide KKI participants with a strong training foundation at The Home Depot and CVS Pharmacy.  After three months of side-by-side 100% job coaching from a KKI vocational trainer, our participants have the self confidence and product knowledge to work independently in these environments.  To address areas that might require development, KKI vocational trainers may develop a picture book, practice role plays countless times, devise a check list of task or attend online computer trainings with the young adult.

Without a doubt, job flexibility and ability to adapt to a changing environment are extremely important in busy, competitive job settings, such as The Home Depot and CVS Pharmacies.  Fortunately, our corporate partners make accommodations for our young adults, including providing consistent work schedules during intensive training, and allowing our job coaches to conduct job sampling across various departments.

While it is accepted in the field that structured environments serve as preferred work settings for individuals on the autism spectrum, I believe that with appropriate support, certain individuals diagnosed with autism can be successful in busy retail environments.  By building upon strengths, devising strategies that help support areas of development, and encouraging participants to be flexible, even the most challenging jobs can serve as good job matches for individuals diagnosed with autism.

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, selectFind a Local Resource and browse the Resource Guide.

Rats Rising: Using the Rat as a Model Organism for Autism Research

October 28, 2010 Leave a comment

Autism Speaks has partnered with SAGE Labs, a division of Sigma Life Science, to create and validate the first line of rat models of autism.  Previous rodent models of ASD, which are important for understanding the biological basis of autism and drug discovery, have used mice.  Such models allow scientists to examine the downstream effects of genetic mutations on brain development and behavior.    For studies of behavior, learning and cognition, the rat is the animal of choice due to its complex behavioral repertoire. With these new genetically modified rats, the richness of previous behavioral and physiological research can be leveraged and applied directly to autism.  These new rat models will now be validated in the laboratories of several scientists who will be studying brain development and behavior of the animals.

Edward Weinstein, Ph.D., director of Sage Labs

Edward Weinstein, Ph.D., the Director of SAGE labs, answers some questions about the new model animals and how they will benefit autism research.

1) Generally speaking, why do we need a rat model of autism when mouse models exist?

Dr. Weinstein: Researchers have been able to create genetically modified mice for the past 25 years, so a large number of mouse models have been created, addressing all sorts of human diseases and disorders.  But mice are not always the best model system for every condition.  For example, researchers who study ocular disease greatly prefer the rabbit.  And the rat is an excellent model for toxicology, cardiovascular, and cognitive research.  In the past, researchers would create the best genetically modified mouse model possible to answer their scientific questions. Now they can create the most relevant genetically modified model in whatever species best models the condition they are studying.

2) Why can’t the same technology that one uses to make a genetically modified mouse work with rats?

Dr. Weinstein:  Genetically modified mice, also sometimes called knockout mice, are created by making changes to the DNA in a mouse embryonic stem cell.  Researchers tried unsuccessfully for decades to develop rat models using the same technology. SAGE labs has developed a new technology, called  zinc finger nuclease technology, which allows us to create knockout rats without the use of embryonic stem cells.

3) Can you describe how the Sigma technology works in a manner accessible to our community?

Dr. Weinstein: The technology is actually fairly straightforward.  We create an enzyme called a zinc finger nuclease (ZFN), which has been especially constructed to target a specific gene.  We can then inject that ZFN into a one-cell rat embryo where it will bind the targeted gene and cause a break in the DNA.  This effectively “knocks out”, or inactivates, the gene.  The one-cell embryo is then transferred into a surrogate rat and 21 days later you have a genetically modified rat that is born.  This genetically modified rat will be exactly like every other rat, with the exception of the inactivation of that one specific gene that was targeted.  Part of the beauty of this technology is that it not only works for creation of genetically modified rats, but also mice and rabbits.  It should work in virtually any animal model system.

4) What do you see are the next steps in using genetically modified rats for autism research?

Dr. Weinstein: We have worked to create a suite of genetically modified rats that we hope will be useful for autism research.  The real challenging work, however, comes in the validation of the models.  Testing these rats to see if there really are behavioral differences in them will be key to determining their usefulness.

In addition, autism research is still at the stage where new genetic links are continuously being uncovered.  We hope to continue to serve the research community by expanding our platform of autism models as rapidly as possible.

5) Genetics is only one component of the autism puzzle.  Research has identified environmental agents that either alone or in combination with a genetic vulnerability lead to the altered neurodevelopment we see in autism.  Can environmental and gene-environment interaction questions be posed using these new rats?

Dr. Weinstein: We get kind of hung-up when we say “genetic model.” We absolutely can do these experiments. Using the genetically modified rats, we can carefully time exposures both in utero and during early post-natal life. Gene-environment interactions are extremely important to understand and we hope that researchers will seek answers to those questions with these new autism model rats.

6) Why did you partner with Autism Speaks for your foray into rat models of genes important in autism?

Dr. Weinstein: We have a lot of expertise in the use of Zinc Finger Nucleases and the creation of genetically modified animals.  However, we don’t have the in-depth expertise or background in autism that is necessary for determining which are the best models to create.  Working with Autism Speaks has been critical from a scientific aspect.  Also, members of Autism Speaks are so well connected to the research community, you know that when you get scientific advice from Autism Speaks, you are getting advice from an entire field of researchers.

We look forward to sharing the results of the behavioral and physiological evaluations of these new rats as scientists begin working with them.

Read a press release about the partnership.

Autism in the News – Thursday, 10.28.10

October 28, 2010 Leave a comment

Tampa mom lived to help her autistic son, family recalls (Tampa, Fla.)
She lived for her son. Most decisions Larsen Hunt made — from her career plans to living arrangements — revolved around what she thought was best for 5-year-old Aidric. Her life goal was to heal his autism, said her mother, Susan Hunt, 54, of Tampa. Read more.

Conference addresses autism (Seekonk, R.I)
In 1994, just 41 students were identified as autistic in Rhode Island. Today, 1,740 schoolchildren have been identified along the autism spectrum. Read more.

Knoxville program helps employ adults with autism (Knoxville, Tenn.)
Every Tuesday, Jennifer Wilkerson helps “Scrappin in the City” open up shop. “She vacuums. She dusts. She mops,” says Yvette Morris, Co-Owner of “Scrappin In The City.” Read more.

Carrick Mom Says Port Authority Driver Kicked Her, Autistic Daughter Off Bus (Carrick, Penn.)
A Carrick mother told Channel 4 Action News that a Port Authority driver kicked her and her 3-year-old daughter off a bus Tuesday while the child was having an uncontrollable fit. Read more.

Local woman turns love of photography into business (Canada)
It was a symbol and a message, but little did a girl at the tender age of eight realize how a camera she received as a gift represented her destiny. Read more.

Autism Talk TV – Episode 10

October 28, 2010 4 comments

This is a guest post by Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University.

In this 18 minute episode of Autism Talk TV I sit down with Lindsay Oberman at Harvard Medical School’s Beth Israel Deaconess Medical Center to talk about TMS, a technology that allows researchers to use magnets to affect the brains of individuals with autism. First we have an interview with Lindsay and then you can watch me undergoing TMS.

Lindsay discusses the details of TMS and how it relates to autism. She has been interested in autism since she was a graduate student and clearly has a passion for finding out how autistic brains differ from neurotypical ones.

I was surprised that the TMS researchers were able to use a magnet to move my hand and individual fingers. The region they affected on me was the motor cortex which governs movement. The idea that you can use a magnet to make changes to the brain sounds like science fiction, but it isn’t fiction at all.

Lindsay is close to conclusively figuring out exactly how autistic brains differ from neurotypical brains. There is great potential for TMS being used as a diagnostic tool as well as a theraputic tool. I think you will be fascinated by this episode of Autism Talk TV.

Check out Alex’s work on Wrongplanet here.


%d bloggers like this: