All About Autism

One of the fundamental building blocks in education is reading. So perhaps it’s no surprise that the “Back to School month” September carries holidays like National Library Card Month and International Literacy Day (September 8^th).

There are many theories surrounding how best to teach reading. One of the most prevalent practices is “Learning to Read and Reading to Learn.” The fundamental premise of this philosophy is as follows:

“Learning to Read” happens in the early grades (K–3) and consists primarily of decoding and memorizing basic sight words. “Reading to Learn” begins in fourth grade and consists mostly of reading for information.

Today, research suggests that for all children “learning to read and reading to learn” should be happening simultaneously and continuously, from preschool through middle school — and perhaps beyond. In fact, teaching comprehension has now emerged as a critical piece of learning to read.

My experiences with Ryan would certainly suggest that this is true. By 3^rd grade, Ryan was an excellent reader; teachers frequently remarked about his advanced reading level. My concerns centered on comprehension. I really didn’t think he understood what he was reading. Perhaps if there had been more efforts to include comprehension along with fluency, he would not have struggled as much with this component as he aged.

Because of the importance of reading skills, International Literacy Day is celebrated across the world on September 8^th. First started nearly 50 years ago, this day highlights that reading is not only a basic human right, it can be an empowerment tool as well. As Frederick Douglass said, “Once you learn to read, you will be forever free.”

Strong, engaged readers become knowledgeable, strategic, motivated, and socially interactive persons. Thankfully, because of public libraries across our country, literacy no longer needs to be something that only the privileged and educated can access. During this month, the American Library Association and libraries across the country join together to remind parents and children that signing up for a library card is the first step towards academic achievement and lifelong learning.

After all, “A book is a gift you can open again and again.” (Garrison Keillor)

Resources:

http://www.ala.org/conferencesevents/celebrationweeks/card

http://internationalliteracyday.org/

Every September, National Childhood Obesity Awareness Month, gives elected officials, educators, physicians, and you the opportunity to take a stand and fight childhood obesity. In the Erie Times News recently, there was an editorial that reported that more than half of the Erie County school children are either overweight or obese.

Although obesity rates have soared among all age groups in the United States, obesity is a particularly grave concern for children. With more than 23 million children and teenagers in the U.S. obese or overweight, childhood obesity is a national epidemic.

Childhood obesity puts nearly one third of America’s children at early risk for Type 2 diabetes, high blood pressure, heart disease and even stroke – conditions usually associated with adulthood.

I wasn’t quite sure how obesity is defined so I looked on the CDC’s website, and learned:

“Body mass index (BMI) is a measure used to determine childhood overweight and obesity. Overweight is defined as a BMI at or above the 85th percentile and below the 95th percentile for children and teens of the same age and sex. Obesity is defined as a BMI at or above the 95th percentile for children and teens of the same age and sex.

For example, a 10-year-old boy of average height (56 inches) who weighs 102 pounds would have a BMI of 22.9 kg/m2. This would place the boy in the 95th percentile for BMI, and he would be considered as obese.”

Children with disabilities stand a greater risk of being overweight due to potential physical and behavioral challenges they might face that prohibit them from exercise, and joining a team or a gym. Medications are another complicating factor, as some medicines cause weight gain. When Ryan began Risperdal many years ago, the physician cautioned me to monitor closely his weight, as 75% of children on this medication experience significant weight gain. Fortunately, he was one of the lucky ones and did not experience this side effect.

Of course, there are many things parents can do to help their children get fit and stay fit. Below is a list of the CDC’s best resources, as well as a Toolkit from the National Childhood Obesity Awareness Month website. I encourage you to check them out and consider what might work for your child.

CDC Resources: http://www.cdc.gov/obesity/resources/strategies-guidelines.html

NCOAM Toolkit: http://www.healthierkidsbrighterfutures.org/about/

On Sunday, in St. Patrick’s bulletin, Fr. Kriegel posted a letter that is widely believed to have been written by Abraham Lincoln to his son’s teacher. 150 years later, it still rings true. As many of us prepare for a new school year, I felt it was great advice to share.

~ Maureen

As we get ready to welcome students back this Monday, I can’t help but reflect on so many of the years gone by. With our first classroom at Lakeview Hospital in the early 50s, to our original school building in the 70s, we have had so many wonderful memories and achievements within these walls! I am looking forward to creating many more this year.

Over the past three years, I’ve written a number of blogs on tips to prepare your child for going back to school (You can read them here, here, and here). Today I thought I would focus on how you as a parent can prepare for this momentous day, and help make the year successful.

• Establish a file for the new school year.

As most of the material you’ll be receiving from school will be paper, it is helpful to create a space to organize daily notes, progress reports, report cards, IEPs, and the multitude of paperwork that you receive throughout the year. I had a file drawer that was “Ryan’s” and in it I kept separate folders for each of these types of information by school year. This is a sure way to easily access a file or report whenever needed. I recently went through these files at home in an effort to declutter. I still had notes from kindergarten!

• Decide how you wish to communicate with the teacher(s).

Email, paper, phone calls, and meetings are all important and require documentation. I always spoke with the teacher at the beginning of the year to find out what system worked best for him or her. For most of Ryan’s school career, I met weekly with his classroom team. I found this to be extremely helpful to allow for consistency between home and school.

• Establish a before and after school routine.

Waking up, getting dressed, eating breakfast, waiting for the bus… these are all things that need to occur seamlessly each morning. Similarly, there are a number of activities that need to occur each night. Bus drop off, homework, exercise, dinner, bedtime routine… you will know what activities are on your list, but by establishing a set routine you will make your life less stressful.

• Positive attitude is key.

Perhaps the previous year may have been challenging for both you and your child, but it’s essential to remember that each year is a new year, and that each person involved in your child’s education deserves a chance to demonstrate their commitment. The beginning of the year is also a wonderful time to express your gratitude to your child’s school and his or her teachers. This will surely set a positive tone to the new school year.

Any other tried and true “back to school” tips that have been successful in your home? I would love to hear about them! Please share your thoughts below!

Did you know that kindergarten-aged children who share, cooperate, and are helpful are more likely to have a college degree and a job 20 years later, compared to those who lack these social skills in early life? In the past, there was a significant push to begin academics prior to kindergarten. It was not unusual to see preschool children sitting at tables completing worksheets. Fortunately, we no longer believe this is the case. We now know that the acquisition of social and emotional skills helps the child to do well in school, pay attention, establish relationships, and learn empathy.

As many children with ASD have deficits in their social-emotional arena, it becomes even more important to begin to teach these skills at a very early age. Today, there are a number of social skills curriculums available at all age groups and skill levels. However, a group that has been ignored, to date, is young adults with autism.

That’s why I was especially interested in reading about the “Program for the Education and Enrichment of Relational Skills” (PEERS). A recent study, published in the Journal of Autism and Developmental Disorders, took a closer look at the success of this program. The results were overwhelmingly positive.

22 young adults, 18-24 years of age, with autism and without intellectual disabilities, were participants in a group study over a period of 16 weeks. Those who completed the classes offered by PEERS had significantly greater improvements in social skills and in their frequency of social engagement, compared to the control group who was on the wait list. In addition, those who took the class had a significant decrease in autism symptoms that were related to social responsiveness.

Even more encouraging, four months after the training participants returned for another evaluation. These results showed that they continued to demonstrate significant gains in social skills and engagement.

I have always said that learning is a lifelong endeavor; I’m pleased that there are now opportunities for continuing social skill development for adults with autism!

For further information on PEERS, visit their site: http://www.semel.ucla.edu/peers/teens

As this week is National Friendship Week, I thought I would use this topic to take a deeper look into autism and friendship, specifically some of the challenges many children and families experience. Of course, the first caveat is “if you know one child with autism, you know one child with autism.” Certainly, what I’m sharing does not apply to all, but hopefully I can offer some general considerations that you may find work for you.

Yes, some children with autism experience communication challenges and have trouble with social interactions. They may shy away from the simplest conversation, avoid eye contact, and appear to be “uninterested.” However, that does not mean that they don’t want to have friends. They may simply lack the social skills for developing friendships.

In reviewing a number of studies, results consistently show that compared to typically developing children, children with autism experienced significantly more loneliness than their typical peers, and that their quality of friendships was poorer, in terms of companionship, security, and help.

I know that in Ryan’s case, developing friendships was something that was important to me but not as important to him. He was most content in interacting with adults who were patient enough to take the time to listen to him and ask thoughtful questions. They were not bothered by his repetitions, nor by his desire to speak about his interests only. Looking back on his school years, I am hard-pressed to even identify one peer who was a friend, a sad commentary on his school career.

What can we do as parents and educators to meet this challenge?

• Be patient when the person speaks. It may take him/her longer to express a complete thought. Auditory processing difficulties are present in many children.
• Communicate clearly, in short sentences, with a reasonable pace and volume. If the child is non-verbal, use a picture or a communication board.
• Plan ahead by making play dates, if possible with typical peers.
• Investigate the Best Buddies program – bestbuddies.org. If there is not a chapter at your school, consider working with administration to start one. Ryan participated in ebuddies (ebuddies.org), and thoroughly engaged with his buddy via the computer.
• There are also numerous activities that you can do with your child to help improve his/her social skills: LINK. Ryan and I, during his preschool years, would have staring contests – Who could look at each other the longest without turning away?

During this National Friendship Week, think about the friendships that you and your child may have, and identify ways to strengthen them!

Malva Freymuth Tarasewicz is an accomplished author and mother to Benjamin, a young adult with autism. Her book, Benjamin Breaking Barriers: Autism – A Journey of Hope, is compelling and full of great ideas. She has since started a blog of her own: www.BenjaminBreakingBarriers.com. I had the opportunity to interview her about her experiences with Benjamin. I hope you enjoy getting to know her; I know I did!

 ~ Maureen

Q: Malva, what prompted you to write this book?

A: I’ve been Benjamin’s primary therapist throughout his life and, being a professional musician and educator, I’ve come up with many creative ways to bring forth Benjamin’s personality and strengths – while also working on his problem areas. Autism therapy is expensive, and parents can do so much to help their children at home. You don’t have to be an expert to be effective, and there’s always a need for fresh insight and inspiration.

My book reads like a novel, and I share the nuts and bolts of what I came up with to help Benjamin. Since we’ve been on this journey for nearly two decades, there’s a lot to share! Many books focus on the crucial early years, but I continue on from there into the problems, ideas, and solutions that have carried Benjamin through elementary, middle, and high school issues.

Since life is a work in progress, I’ve extended the book into a collaborative blog that includes essays by Benjamin. For example, he has expressed his current views on romantic relationships, and has written about music and how it helps him when things are difficult. The music essay, by the way, was picked up by Autism Speaks and was also featured in the Art of Autism awareness campaign this past spring.

Q: For you, the arts are key to enlivening the therapeutic process. Can you give an example?

A: Being a musician, I naturally gravitate to musical sounds and rhythms – music accesses something primal within us. Oliver Sacks, eminent brain researcher and psychologist observes, “Music occupies more areas of the brain than language does—humans are a musical species.” Anyone can clap a rhythm and sing; even a tone-deaf person can use a sing-songy voice that is clearly different from their ordinary speaking voice. And music will often get a response from someone with autism when a spoken directive will not. For example, when first encouraging Benjamin to give eye-contact at age two, I’d put him in a hammock and, while swinging him back and forth, I would sing. Then I’d stop in the middle of the song and Benjamin would inevitably glance up at me, wondering why the music had disappeared. To reward his eye-contact, I’d resume singing, and this gradually became a sort of game, a back-and-forth interaction. Getting that eye-contact was a big deal because Benjamin was so lost in the fog of autism – thus, music became a primary gateway to engagement. My book gives many examples of how to use music in day-to-day therapeutic engagement.

Q: Benjamin has exceptional public speaking skills, and you’ve mentioned his long-time involvement in theater. Can you recount the beginnings of this path?

A: First, let me say that theater, by its very nature, lends itself to being therapeutic: you get to practice lines and body language over and over again, and you learn to be part of a team as well, so you are working on social skills. But long before a child with autism might participate in drama, you can create little mini-plays that dovetail with your therapeutic goals. I did this a lot with Benjamin when he was little. For instance, I would take one of those four-line verses like, “Jack and Jill went up the hill…” I’d work it in all manner of ways. Using dolls/figurines, we’d practice play skills and reinforce comprehension. We’d act out the verse using props and costumes, working on speech issues and physical gestures. We’d draw pictures – thus addressing fine motor and visual/spacial skills. We’d sing the verse too, clapping, marching, or dancing along. Mother Goose rhymes are precious seed-material—you can do so much with them!

If you are interested in purchasing Malva’s book, you can find a copy on Amazon here.

Benjamin has given a TED talk titled Breaking Barriers of Autism: The Power of Kindness and Friendship. Watch it here: https://www.youtube.com/watch?v=r05BUkOfOk8

Although it may not always seem to be the case, scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. After the positive response I received when I posted Top Research Stories of2014, I thought I would start to share some of the current research articles that I read on a monthly basis. Below are three stories that caught my eye this month.

Study Picks Up Autism Broadcast in Tiny Antennae on Cells

A new study suggests that some symptoms relating to autism may be connected to a mutation in a section of Chromosome 16, which is linked to autism. Cilia, which are essentially miniscule hairs on the surface of all cells, are altered as a result of this chromosome mutation. The study also raises the possibility that drugs that target the cilia may ease symptoms of autism.

Read the full article here.

Study Finds Autism, ADHD Run High in Children of Chemically-Intolerant Mothers

A new study from the University of Texas Health Science Center at San Antonio found that mothers with chemical intolerances are two to three times more likely than other women to have a child with ASD or ADHD. Chemical intolerances include sensitivity to engine exhaust, gasoline, smoke, fragrances, cleaners, nail polish remover, and air fresheners, to name a few.

Read the full article here.

Contrary to Previous Studies, Children Born By Ceasarean Section Are Not At Higher Risk for Autism

Two Swedish siblings have provided the best evidence to date that there is no causal link between birth by C-section and autism, contrary to older studies that suggest that C-sections raise a child’s risk by up to 20%.

Read the full article here.

Tune in next month for an update on autism research!

In July, Maria Shriver’s foundation released The Shriver Report Snapshot: Insight into Intellectual Disabilities in the 21st Century. This report shared the results of an online poll, conducted within the United States, after surveying a total of 2,021 adults ages 18+, of whom 1,103 were identified as knowing someone with an intellectual disability. The poll was conducted by Harris Poll, on behalf of The Special Olympic Games in Partnership with Shriver Media.

The survey shows a nation in the midst of change. Overall, the survey reveals that the more than half of Americans who have personal contact with someone with intellectual disabilities are increasingly accepting and positive. It also exposes that lack of contact has left a legacy of misinformation, dated stereotypes, ignorance and fear in the other nearly half of Americans. When it comes to attitudes towards people with ID, experience is the game-changing ingredient. Despite gains in visibility, the estimated 3 to 9 million people with ID living in the United States remain isolated from the rest of society. Likely as a result of increased exposure and interaction, young adult Americans have more progressive attitudes toward, and expectations for, people with ID. Millennial women, ages 18-34, in general are the most compassionate, inclusive and progressive of any group surveyed.

Some Stats:

Increased Exposure

• 56% of Americans personally know someone with an intellectual disability
• 42% of Americans have had no personal contact with someone with an intellectual disability
• 13% of Americans say they have a friend with an intellectual disability
• Only 5% know what it is like to work with someone with ID
• Nearly half of those who know do someone with ID (44%) say they have a family member who has an intellectual disability

The “R” Word

• 89% of Americans agree that calling someone with Down syndrome or autism a “retard” is offensive
• Nevertheless, a large number of Americans think the word “retard” can be used inoffensively in other situations. Many believe it is not offensive to call a friend a “retard” (38%) or to describe oneself that way after making a mistake (56%)

Life & Work

• Those who personally know someone with an ID are significantly more likely than those who do not know anyone with an ID to feel at least somewhat comfortable employing (84%) or working with someone with an intellectual disability (87%)
• An overwhelming majority of Americans (93%) believe that adults with intellectual disabilities should be encouraged to have jobs
• 62% believe that people with intellectual disabilities and their families should receive financial assistance from the federal government
• 84% say that adults with intellectual disabilities should be encouraged to live independently
• Still nearly 1 in 10 Americans (8%) believe that all adults with intellectual disabilities should be institutionalized

Education

• 4 in 10 Americans (39%) believe that children with intellectual disability should not be integrated in the same classroom as other kids their age
• 26% of Americans believe that parents of children with intellectual disabilities should lower their expectations about their child’s potential for success

Society

• 44% of Americans believe that a person with an intellectual disability who commits a crime where the death penalty is a possible sentence should be treated no differently than someone without an intellectual disability
• 22% believe that adults with intellectual disabilities should not be allowed to vote in elections
• 53% of Americans are comfortable with the idea of having their child date someone with an intellectual disability
• 91% said they would expect at least some parents to terminate a pregnancy or give the child up for adoption if they found out their child had an ID, but only 18% said that most would end pregnancy or give up the child

While I was pleased to read some of the statistics, I was quite frankly shocked by others. We certainly have come a long way in our attitudes towards individuals with intellectual disabilities. However, it is up to us to assure that we continue and expand our educational programs so that 100% of our society is compassionate, accepting, and understanding of persons with intellectual disabilities. The challenge is ours!