All About Autism

“Autism – What We Know” by Wendy Chung

Posted on April 29, 2014 by all about autism

For today’s blog, I originally planned to take a look back on the month of April and our activities.

However, I just watched a TED Talk titled “Autism – What We Know (And What We Don’t Know Yet)” by Wendy Chung, the Simons Foundation Autism Research Initiative (SFARI) Director of Clinical Research. Dr. Chung’s presentation is a concise, informative review of what we know about autism, what we don’t know, and what definitely has been proven false.

Dr. Wendy Chung

Some of the information that I found fascinating included:

– Genes play a larger role in autism than they do in cancer, heart disease, or diabetes

– 25% of cases with autism are caused by a genetic mutation that was neither possessed nor transmitted by the parent but occurred in the egg, the sperm, or both

– There is not one gene for autism but 200 to 400 different ones that can cause autism. Understanding how the genes work together will be the key to treating autism.

Full interaction network with ASD genes highlighted

– An eye-tracking tool measuring a baby’s eye movement as he/she watches a video of a person speaking is being used by researchers to analyze whether the baby has trouble making eye contact and thereby is more likely to develop autism

Interaction between ASD genes.

As Dr. Chung so clearly states, “as much as we know, there is so much more that we don’t know”. I’d encourage you to take the 15 minutes and watch the video, tell your friends about the talk, and together we can increase autism awareness not just in April but throughout the entire year. If you know a person or family living with autism, encourage them to join the Interactive Autism Network (IAN). Much more research and information is needed and if we are to help people on the spectrum live their best lives.

Posted in Uncategorized | Tagged asd, autism, bni, ELBS, SFARI, Simons Foundation Autism Research Initiative, special needs, Wendy Chung | Leave a comment

iPads have created a buzz among families raising a child with autism. A child who is unable to speak can only express his needs and wants through behavior. For example, a child could take a parent’s hand and walk him to the refrigerator or he/she could be a temper tantrum. With the explosion of technology many parents are asking the question “can a technology device such as the iPad help my child learn language?”

At the BNI we have seen significant improvements in language in our students when the iPad is used in conjunction with therapy. However, I am always looking to research to support educational practice. Therefore I was pleased to see that research teams at UCLA, Vanderbilt and Kennedy Krieger had tested a developmentally based behavioral intervention approach for teaching language using the combination of spoken language and speech generating devices (SGD) including iPads. They found that in a group of 62 children over a nine month period using the SGD the researchers saw significantly greater improvement in spoken language in comparison to the same intervention without access to the SGD. Over time many of the children decreased their use of SGD because spoken language was quicker and more efficient.

Here are some suggestions and tips to help you incorporate the iPad at home:

If possible have one iPad for communication and another for leisure skills/entertainment. We’ve done this in the classroom because we have found that if the child is using it as a reinforce it is very difficult to get him to maintain attention to a task. An inexpensive way is to have different colored covers for the iPad.
The application Proloquo2go.com was used in this study. We did not find this app to be appropriate for many of our students so this led us to explore LAMP, ArtikPix and this list of articulation apps. BNI’s speech therapist cautions that there are so many apps available to help children learn speech; however, many of them are not developed by speech-language pathologists. Parents should look for apps specifically designed by licensed and trained speech-language pathologists. These apps should not be used in place of a SLP, but should instead be used as a way for parents to work on generalization/carry over of skills.
Be flexible. Choose an activity that your child really enjoys and have an alternative in mind when he loses interest in the game and communicating.
Take advantage of this great opportunity for turn taking, a skill many children need to develop.
Verbalize or use your language to describe the pictures your child is seeing on the screen. Take advantage of using prepositions to describe the location of the object.
Limit the iOS device to stay on one app by disabling the Home button – please email me for step by step instructions on how to do this.

As someone who is taking baby steps to become technology literate I encourage you to do the same. There is a world of opportunity out there for our children. Just reach out and ask for help. Please share with us any of your thoughts on iPads and communication.

Posted on April 25, 2014 by all about autism | Leave a comment

Landmark Agreement Helps Adults With Disabilities Enter the Competitive Workplace

Posted on April 22, 2014 by all about autism

Last week the Justice Department announced a “landmark” agreement with the state of Rhode Island, which was found to have violated the Americans with Disabilities Act by segregating adults with disabilities in workshops and day facilities. Over the next ten years Rhode Island is required to:

Assist these adults in securing typical jobs in the community that pay at least minimum wage with the flexibility of remaining in the workshop if they so prefer.
Support non-work activities in the mainstream (i.e. libraries, recreational facilities).
Prepare high school students with developmental disabilities for competitive jobs in the community through internships and mentoring programs.

Public funding that had been utilized to support segregated environments is to be redirected toward services in integrated settings. It is anticipated that the settlement will provide a roadmap to compliance for all states.

This consent decree came as a result of an investigation of the Providence Training Through Placement program by the federal Labor Department. The investigation found abuse of a federal law that allows the payment of subminimum wages. In addition, many workers had expressed interest in securing employment in a competitive workforce but had been ignored.

On a similar note, researchers at Vanderbilt University and the University of Wisconsin/Madison examined 150 adults with autism. This study, published in the Journal of Autism and Developmental Disorders, found that more independent work environments may lead to reduction in autism symptoms and improvement in daily living skills.

For these reforms to be successful, businesses must support expanded training and employment of persons with disabilities. A positive outgrowth was the announcement that the U.S. Business Leadership Network, which includes Fortune 500 companies and Walgreens, will sponsor a summit meeting in June 2014 to engage the business world in these efforts.

Advocates for adults with disabilities will be closely monitoring these developments in the upcoming months. If you’re a business person and would be open to the possibility of hiring a person with disability there are a wide range of programs available to assist you. For more information on how our Employment Specialists can assist adults with developmental disabilities in finding employment & meeting the needs of employers contact: myself, Steve Davis at SteveD@barberinstitute.org or Maggie Dimitriadis at MaggieD@barberinstitute.org.

Here are just a few testimonials:

“The Barber Institute has a wonderful job coaching program that helps individuals gain their independence and become successful Wal-Mart Associates.” Lori – Wal-Mart, Human Resources Office.
“[The individual placed is a] conscientious employee that appreciates his job. Richard – Girard Dinor, Owner.
“I wanted to take a second to let you know how valuable your services are to our organization. Our employee that you have coached and trained is second to none . . . I would also strongly encourage any of my peers and colleagues to take advantage of the supported employment services offered by the Barber National Institute. They definitely won’t be disappointed!” Janet – Forestview Nursing Home, Dining Supervisor

Posted in Uncategorized | Tagged adults with disabilities, Americans with Disabilities Act, autism, bni, ELBS, employment, employment services, Rhode Island, special needs | Leave a comment

Hoppy Easter!

Posted on April 17, 2014 by all about autism

This blog may seem a little familiar. It was one of my first blogs posted on April 5, 2012 yet it is still relavent today so I wanted to share it again.

While holidays are filled with joyful memories, they can also bring added stress for parents. Changes in schedules, visits to unfamiliar sites and meeting new people can lead to challenging behaviors in some of our children. In thinking about the upcoming Easter weekend, I wanted to share a few tips that I have learned over the years:

– Avoid Easter Egg Hunts that involve hundreds of children. The noise, distractions, and unfamiliar faces can lead to anxiety in some children. What you hope to be a fun, positive experience, quickly can turn in the other direction.

– Make a reasonable schedule. One or two visits to relatives’ homes may be as much as your child can handle. Keep the visit time limited. If you are going for dinner, arrive right before and depart soon after. Don’t plan on spending 2 or 3 hours in unstructured time. Follow your usual schedule for most of the day and then go on your visit.

– Practice makes ease. Write social stories days in advance and practice the skills you want your child to demonstrate. This could be simply walking up to each person, shaking hands, and saying, “Happy Easter!”

– Use visual aids. Give your child a visual schedule of what the visit will look like. This could also be done with pictures.

i.e.: 4:30 p.m. – Leave home

5:15 p.m. – Arrive at grandma’s home

5:15-5:40 p.m. – Visit

5:40-6:00 p.m. – Eat Dinner

6:00-6:30 p.m. – Take a break. If it’s a beautiful day go for a walk, some outdoor play, or watch your child’s favorite DVD.

6:30 p.m. – Eat Dessert

6:30 p.m. – Depart

– Comfort Zone: Take your child’s favorite toy, book, or iPad to the party. Identify a quiet room in the house that your child can use for a break. When you arrive, show your child the room and explain the room’s purpose.

– Work as a team. If you and a spouse or a friend are attending the event together, drive two cars. If you need to leave early with your child, then the rest of the family can stay until the end. You won’t feel guilty that the rest of the family is missing out.

– Use a tag-team approach. Ask a few family members who understand your child’s situation if they would give you a break and stay with your child so that you can visit with your family.

– Take your time. If you are responsible for Easter dinner, take a vacation day or two prior to the holiday so that you can prepare while your child is at school. If family members offer to bring a dish, take them up on it. If you are going to someone’s house, be sure to explain to them your child’s diet restrictions, as well as preferences.

– Keep your child engaged. Involve your child in some aspect of dinner preparation, such as coloring place cards, writing a holiday prayer, hanging up coats, etc. Make a job list for your child to complete and have him or her cross jobs off as they are finished.

– If the day goes well, congratulate yourself. Make a list of what you did that helped your child to be prepared and any ideas you can use for future holidays.

– Forgiveness brings peace.

If the day is challenging when you go to bed:

Forgive yourself for any negative feelings you have.
Forgive your child for his or her behavior.
Forgive your friends and family for not having the patience and understanding you have.

Holidays will always bring stress. But with good planning, you may actually begin to look forward to them.

Next week I will be discussing the landmark court case in Rhode Island.

Happy Easter!

Posted in Uncategorized | Tagged activities, asd, autism, autism spectrum disorder, bni, easter, easter egg hunt, Easter Tips, eating, ELBS, food, Happy Easter, holidays, special needs | Leave a comment

There’s Nothin’ Better Than A Good Old Fashion’ Friend

Posted on April 16, 2014 by all about autism

The latest report released by the CDC indicating one in 68 8-year- olds has Autism Spectrum Disorder (ASD) has everyone talking. This 30% increase since 2012 tells me that every elementary classroom probably has one child on the spectrum. Looking back to Ryan’s preschool and elementary years in the mid-1990s this certainly was not the case. Yes, there were children with ASD and significant cognitive challenges in public schools, but typically they were in special education classrooms. Today, most children are included in regular education.

Even with a growing number of children with autism in our schools, I hear from many parents who are concerned that their child has few friends. This is an issue that Ryan and I experienced throughout his educational career. Children with ASD face many challenges including isolation from their peers. Having friends to help them through difficult times can boost their self-esteem, enhance their social skills and protect against bullying.

As this is Autism Awareness Month I wanted to share my thoughts on how to be a friend to someone with autism.

Take the initiative, find common interests, be patient. Friendship doesn’t happen overnight but will develop over a series of interactions.
Keep the first few interactions short as meeting with other people may cause stress and anxiety.
Talk at an even pace and volume. Allow your friend time to process your comments and form a response.
Eye contact is not needed to engage in conversation.
Ignore repetitive behaviors unless they are inappropriate for the situation. If that is the case, just tell him/her what the right thing is to do because he/she may not know that.
Celebrate your friend’s successes while accepting his/her differences.

As a parent I encourage you to:

Create a culture of acceptance within your family
Encourage your child to play with children who are different than he/she (culturally, differently abled)
Be proactive and initiate a playdate with a child with ASD.
Help a child with ASD by including him/her or simply hanging out one-on-one watching how you interact with people will help the child learn the rules for friendship and make it easier to develop friendships with others.

As we continue to celebrate Autism Awareness Month let’s establish a goal of creating and nurturing new friendships with people with ASD.

Posted in Uncategorized | Tagged asd, autism, autism awareness month, autism spectrum disorder, bni, bullying, ELBS, friends, friendship, parents, school, self-esteem, social skills, special needs | Leave a comment

How Do Thirty Million Words Affect Your Child?

Posted on April 10, 2014 by all about autism

Dana Suskind, MD (photo courtesy of Thirty Million Words Initiative website)

Did you know that by age 4 children living in poverty had heard 30 million fewer words than their counterparts in more advantaged families? This finding led Dana Suskind, M.D. to establish the “Thirty Million Words” Initiative to close the achievement gap and give children the best start in life. In this home-based program parents learn to enhance their home language environment utilizing an interactive multimedia curriculum. PNC announced at its recent Grow Up Great 10^th anniversary celebration in Chicago, a $19 million initiative supporting early childhood language development. This grant will include a five year longitudal study to determine the effectiveness of the Thirty Million Words initiative by following between 200 – 250 Chicago children from 15 months of age to kindergarten.

Nick Scott, Jr.

In our own state of Pennsylvania the success of every child is one of top economic priorities. Therefore, Pennsylvania established the Early Learning Investment Commission to build a private/public partnership of business leaders to advocate for quality early childhood education investment. We are fortunate to have local entrepreneur Nick Scott, Jr. lending his expertise to the commission. This morning he joined us to celebrate National Week of the Young Child by reading Brown Bear, Brown Bear What Do You See, by Bill Martin Jr. and Eric Carle to our students. It’s very encouraging to see that our business leaders are acknowledging that the future of our city, state and nation is based upon quality early childhood education.

Please share your ideas on how we can expand the network of business champions who understand the connection between early childhood learning experiences and a strong economy.

Posted in Uncategorized | Tagged autism, bni, Dana Suskind, early childhood education, ELBS, grow up great, Nick Scott Jr, pnc, special needs, Thirty Million Words, week of the young child | 2 Comments

Celebrating the Week of the Young Child

Posted on April 8, 2014 by all about autism

Last week I had the honor of attending PNC Grow Up Great’s tenth anniversary in Chicago. This week marks the Week of the Young Child. Both of these events focus public attention on the needs of our children under 5 and their families and recognize the essential role of early childhood programs. In 2004, PNC recognized the importance of these early years and committed $100 million to prepare America’s youngest children to be ready for kindergarten. In the last ten years that commitment grew to $350 million with 2 million children served and 39,000 employees participating.

The National Association for the Education of Young Children (NAEYC) began the “Week of the Young Child” over 40 years ago in recognition that the early childhood years lay the foundation for children success in school and later in life. Today we know that for every dollar spent on high-quality early education, society stands to gain up to $16 in long-term savings. Why? Because we know that children who participate in quality early childhood education are more likely to graduate from high school, avoid drugs and incarceration and go on to own their own homes, cars and savings accounts.

What can you do to support the “Week of the Young Child” and early childhood education?

Volunteer at the children’s section in the library.
Read to a young child in your life.
Make your legislators aware of the importance of early childhood education for the success of our country.
Host a book club for parents and young children.
Tutor a child at a local school.
Check out Sesame Street’s new Muppet, Buzz Word, who is promoting “Words Are Here, There And Everywhere” a bilingual vocabulary program.
Stop by a PNC branch and pick up a “Words That Help Me Grow” vocabulary tree poster.
Explore the PNC Grow Up Great website which offers a new online lesson center featuring early education lesson plans.

On Thursday I will share with you information on Thirty Million Words, a multi-million dollar language development initiative supported in part by a $19 million grant from PNC.

Free the child’s potential, and you will transform him into the world. ~ Maria Montessori, Italian Physician and Educator

Posted in Uncategorized | Tagged autism, bni, book club, Buzz Word, early childhood education, ELBS, legislature, library, pnc, PNC Grow Up Great, preschool, read, school, sesame street, special needs, Thirty Million Words, week of the young child, Words That Help Me Grow | Leave a comment

See Amazing In All Children – Sesame Street Style

Posted on April 4, 2014 by all about autism

Photo Credit: Sesame Workshop

On World Autism Day Sesame Workshop announced its latest initiative “See Amazing in All Children.” Partnering with Autism Speaks, this new venture will aim to increase understanding, reduce stigma and demonstrate the commonalities that children with Autism Spectrum Disorder (ASD) share with other children. In

Sesame Street – Abby Cadabby

addition, the workshop will also develop tools and resources for families of children with ASD to help reduce the stress of everyday routines such as getting dressed, brushing teeth and interacting with peers. Digital media tools featuring Sesame Street characters will assist parents in breaking down these routines into simple steps. One of our Sesame Street favorites, Abby Cadabby, kicked off the initiative along with Autism Speaks

Sesame Street – Elmo

cofounders Suzanne and Bob Wright by lighting the Empire State Building blue.

All of us parents of children with ASD and other disabilities have experienced challenges when our children are not accepted by their peers. Often it is a lack of understanding about the disability that causes fear and uncertainty, which can lead to isolation and exclusion. I’m hopeful that Sesame Street’s “See Amazing in All Children” initiative will lead to greater understanding and thereby acceptance and inclusion with their peers and the community at large. As I said in my op-ed, it is important to support an inclusive community by welcoming people with ASD to your events, health clubs, churches and schools. This can only be a win / win opportunity for the person with autism and for all of us.

Posted in Uncategorized | Tagged Abby Cadabby, asd, Autism Awareness Day, autism awareness month, autism speaks, autism spectrum disorder, bni, ELBS, LIUB, See Amazing In All Children, sesame street, sesame workshop, World Autism Day | Leave a comment

Recognizing Three Ground Breaking Developments in Autism Research on World Autism Day

Posted on April 2, 2014 by all about autism

research2

I wrote an op-ed piece for the Erie News Times and I wanted to share it with you.

As communities around the globe prepare to celebrate World Autism Day, we look back on a year that has been unprecedented in advancing the diagnosis and treatment of Autism Spectrum Disorders (ASD). More and more studies continue to make headlines as we build upon a foundation of knowledge established over the last twenty years. As the Autism Speaks chief science officer states, “When it comes to scientific discovery in autism research it just keeps getting better and better.” I would like to share a few ground breaking developments in the areas of eye gaze, folic acid and technology.

With one in 68 children diagnosed with ASD, many parents are asking the question “could

Ansley Brane, a typically-developing 5-month-old participating in eye-tracking research at Marcus Autism Center.

my child have autism?” Fortunately, we no longer have to wait until a child turns preschool age to answer that question. Reliable screening tools can be used with children as young as 12 months of age. In a new study, researchers used high tech eye tracking to discover a subtle but consistent decline in eye contact that begins around two months of age in babies who go on to develop autism. If the initial results are confirmed, this finding would provide the earliest biomarker of ASD. Intervention could begin earlier than ever before possible, leading to real improvements in brain development, learning and social engagement.

For years, we’ve known that taking folic acid during pregnancy played an important role in producing red blood cells and helping the fetal neural tube develop into the brain and spinal cord. However, in 2013 we learned that maternal use of folic acid supplements around the time of conception was associated with a lower risk of autistic disorder. The findings support previous research that shows children of mothers who take folic acid in the four weeks before and eight weeks after conception had a lower risk of developing autism.

Nao, a robot used in Autism research at the Notre Dame Psychology Department’s Center for Children and Families…Photo by Matt Cashore/University of Notre Dame

Closer to home, the Barber National Institute began collaborating with the University of Notre Dame to ensure that advances in the research lab translate to the real world of school and home. We are examining whether including an interactive robot in therapy sessions improves the development of social skills over traditional methods. We know that many children with ASD have a natural interest in technology and are very motivated by the robot.

Preliminary results compiled in Erie and at Notre Dame indicate that a majority of children with autism are more successful learning new skills when working with the robot as compared to just a therapist. More importantly, the children are able to generalize the skills they are learning with the robot to communicate better with their parents and other children in their lives.

We began diagnosing increasing numbers of children with autism in the early 1990s. These children are now in their early 20s and may be in college or post-secondary training programs and / or in the workforce. Unfortunately, we also know that young adults with ASD are less likely to continue their education or get a job after high school when compared to young adults with other disabilities. Only about 35% of young adults with autism attend college and only 55% have a job during the first six years after high school. Overall, they face a greater than 50% chance of being unemployed or not attending college when compared to those with other disabilities. For many families of children with autism, leaving high school is compared to falling off a cliff because of the lack of services and jobs for adults with ASD.

How can you be involved in the next wave of helping autism “keep getting better and

Ryan working at BNI through the TWS program.

better?” If you are a business owner, hire a person with autism. Contact our Supportive Employment office, tell us about your job and we will find the right candidate for you. There is no expense to you and we provide a job coach to train the candidate on the job. If you are an employee, welcome and encourage diversity in your workforce. If you are a citizen, support an inclusive Erie community by welcoming people with ASD to your events, health clubs, churches and schools. This can only be a win / win opportunity for the person with autism and for all of us.

Posted in Uncategorized | Tagged 1 in 68, advocacy, asd, aspergers, autism, autism awareness, autism issues, autism research, barber institute, barber national institute, bni, ELBS, eye contact, folic acid, infants, light it up blue, research, robots, special needs | Leave a comment

How Are You Going To Light It Up Blue?

Posted on March 27, 2014 by all about autism

Light it up blue for my son What are you going to do to shine a light on autism? Each April 2^nd we celebrate Light It Up Blue in commemoration of the United Nations sanctioned World Autism Awareness Day. This is a unique global initiative that kicks off Autism Awareness month and helps raise awareness about autism.

sydney-opera-house1 Last year more than 8,400 buildings and landmarks on all 7 continents illuminated bright blue on the evening of April 2^nd. Locally the Bicentennial Tower and Mercyhurst University went blue. As I drove throughout our community it was amazing the number of families who changed their white porch lights to blue.

light-it-up-2 You can register your participation with Light It Up Blue (link) and upload your photos of participation to the LIUB photo gallery. At the BNI we will be taking a Wear It Blue group photo of our students and faculty. I am going to turn my Facebook and Twitter profiles blue as a quick way to show my support for the program. Please share ways that you are showing your support for Autism Awareness Day and Month.