All About Autism

This past Monday, an op-ed piece I wrote was featured in our local newspaper. I thought I would share it below, for anyone who may have missed it!

~ Maureen

Every July, we celebrate two anniversaries of independence. One is, of course, July 4^th. The second is less well known. On July 26^th, 1990, President George H.W. Bush signed the historic Americans with Disabilities Act, a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.

While the ADA has led to changes throughout society, perhaps the greatest area of impact is in the area of employment. With passage of the ADA, employers were required to give all qualified individuals equal opportunity in the workforce, regardless of any disability they may have.

Now, 25 years later, we have seen so many wonderful achievements for individuals with disabilities. And we have seen incredible growth in the overall community’s attitude and mindset regarding people with disabilities. No longer are persons with intellectual disabilities hidden away in institutions; rather, we hear more and more success stories every day about what people with disabilities are accomplishing. It really is a joyous thing.

Across the Erie community, scores of businesses have opened their doors to hiring people with disabilities. Over the last several years, the Barber National Institute has assisted hundreds of individuals in securing employment. Currently, 25 local businesses employ adults with intellectual disabilities who have been trained through our supported employment program.

Still, we know that there is always more work that can be done. Too often, I hear of people who are considering opening their doors to offer employment opportunities, but have concerns. I want to debunk some of these more common myths about employing individuals with disabilities.

Myth: Hiring workers with disabilities increases workers compensation insurance rates.

Fact: Insurance rates are based solely on the relative hazards of the operation and the organization’s accident experience, not on whether an employer has hired workers with disabilities.

Myth: Providing accommodations for people with disabilities is expensive.

Fact: Did you know that many accommodations or special equipment are available at absolutely no cost? And for the minority of workers with disabilities who do need some sort of special equipment or accommodation, 56% of these cost less than $600. Employers should know that available tax incentives make it even easier for businesses to cover accessibility costs.

Myth: Employees with disabilities have a higher absenteeism rate than employees without disabilities.

Fact: Studies show that employees with disabilities have a lower absenteeism rate and a lower turnover rate when compared to employees without disabilities.

People with disabilities are wonderful assets to a business. They are typically prompt, work until the job is complete, are not searching for alternative employment, and are dedicated to doing a thorough job.

I can’t think about the passage of the ADA without recalling a remarkable woman who was seated in the audience.   Dr. Gertrude A. Barber was a member of President Kennedy’s commission on Mental Retardation, involved in crafting and promoting the ADA, and, of course, known for her life’s work on behalf of creating opportunity for individuals with disabilities. In recognition of her efforts, Dr. Barber was invited to the White House to see this landmark legislation passed into law.

I can recall how happy she was to see this step taken to end discrimination, and how proud she was that the Erie region was on the forefront of this battle.

Each year, approximately 50,000 individuals with disabilities turn 18. Nearly half of these individuals will have average or above average intellectual capabilities. Whether you are a business owner or an employee at a business, consider contacting the Barber National Institute to see what steps you can take to become a place of employment for adults with intellectual disabilities.

A recent Autism Speaks blog discussed serving the refugee resettlement community in Rochester, NY. Our own Erie community has a refugee population beyond 10,000. Over the past decade, approximately 350-475 new refugees have annually resettled in the city, thereby making Erie one of the largest resettlement destinations for refugees in PA. In our school, we have over 20 refugee students enrolled who have emigrated over the last several years from Eastern Europe, Asia, Middle East, and Central America.

As I read this blog, I couldn’t help but think about the challenges the parents of these children have experienced, not only in moving to a new country, but also in possibly not knowing the language, the customs, the education or social services systems. Most of them have expressed to me that the primary reason they came to the United States was to receive services for their child with a disability. They were willing to live in refugee camps for years if only they could resettle in the United States in the future. Their experiences underline how fortunate we are in America to have the wealth of support services for children and adults with disabilities and their families.

With the 25^th anniversary of the Americans with Disabilities Act coming up this Saturday the 26^th, I applaud the leadership role the United States has taken in securing equal rights for citizens with disabilities. While there’s always room for improvement, it’s important to acknowledge how privileged we in the United States are, in so many ways.

Eye contact – a simple concept, but a challenge for many children on the spectrum. From my perspective, eye contact is an important method of communication in social interaction that can provide a wealth of information. Often, many of us don’t even think about making eye contact, it happens so naturally. However, this is not the case for some children and adults with ASD. In fact, it can even be a source of great anxiety and stress. There are many who suggest that we should teach eye contact, as it is an essential life skill. I would say that it all depends upon the child.

Take Ryan for example. When he was two years of age, we would work on the drill: “Look At Me.” If he did, he received a reinforcer. It sounds very basic, but it was a starting point. This was pretty easy when he and I were sitting at home practicing. However, with unfamiliar surroundings and people, Ryan had trouble applying the skill. Over time, he improved in his eye contact with others, especially if the topic being discussed interested him. His eye contact definitely decreases when he’s nervous, anxious, or stressed. When he’s “silly,” his eye contact is perfect, because he knows he’s doing something he’s not allowed to do.

Today, I’m not concerned about whether or not he maintains eye contact; I am more interested in his level of conversational engagement, his attention to task, and if he is demonstrating appropriate behaviors. Fortunately, most adults will stay engaged with him even if he chooses not to give eye contact, although this is not always the case with peers.

For parents who are facing issues with eye contact, I encourage you to read this Autism Speaks blog: http://bit.ly/1Kc6LVZ. One tip I’ll pass along that I found helpful with Ryan is to encourage him to look at a person’s shoulder while he/she is speaking, if direct eye contact was too uncomfortable. This worked for him when he was in a job interview situation and was quite nervous. He would look at the employer’s shoulder and it would appear that he was actually giving him/her eye contact.

What has worked in your house? I would love to hear your tips and stories!

What a whirlwind start to our week! It may be summer vacation for our students, but we are working hard on several exciting opportunities for the organization this month. As the 25^th anniversary of the Americans with Disabilities Act approaches, we have been giving a lot of thought to the wonderful changes this has brought about, as well as the areas where we could continue to grow and push forward. Look for an op-ed in the Erie Times News to appear soon!

Nationwide, we are starting the celebrations early with the arrival of #DisabilityStories on Twitter this Wednesday. We will participate in the conversation by sharing #DisabilityStories in the form of photos, facts, links, videos, and conversation on social media. Read more about this fun mission here: http://bit.ly/1eytOir.

Did you know that TEDx Conferences are coming to Erie? For those of you unfamiliar, TED, which stands for Technology, Entertainment, Design, is a set of global conferences that includes talks by professionals, entrepreneurs, educators, business owners, and thought-leaders on topics ranging from science, culture, academics, and more. These presentations, known as TEDTalks, are available to watch for free on their site, ted.com. TEDx conferences are independent TED-like events, which can be organized by anyone who obtains a free license from TED, agreeing to follow certain principles. I am happy to report that we are in the process of submitting an application to the upcoming TedxErie.

Stay tuned!

Ann Ellison, MA BCBA, and Maria Brown, MS BCBA, presented “The Next Generation: Social Skills and Video Modeling in the Digital World” for the National Autism Society of America in Denver, CO, this week.  They were honored to be selected from the hundreds of proposals that were submitted!

Key objectives of the presentation were:

• List essential features of effective social stories and video modeling
• Identify three digital tools which can be used to create a project
• Create a basic story board for a project

Social stories and video modeling can be used to teach, as well as reinforce, any skill area. At ELBS, we use these methodologies to develop social/ communication skills, functional/academic skills, and employment skills, just to name a few.

As defined by Carol Gray (1991), Social Stories™:

• Teach new behavior or strengthen existing behaviors
• Define expected behaviors (social rules)
• Explain the behavior of others (perspective)
• Present information in a concrete, literal way
• Support sequencing, organization, and planning
• Provide structure to unknown situations

As part of the presentation, Ann and Maria will discuss how to develop a social story, take effective videos, and develop tutorials. Their motto is: “Be inspired… Create, share, and teach!”

If you would like to view their entire presentation, click here: Denver.

Meltdown? Tantrum? This decision can be tricky, but it’s really important to differentiate between the two because your approach to handling the behavior will greatly differ. After many years of experiencing both and trying to discern what is happening, I wanted to share with you some tips about how to tell the difference and what to do for each.

For those unfamiliar, a meltdown is considered “an involuntary reaction to over-stimulation, whether cognitive or sensory,” while tantrums are “voluntary reactions in order to manipulate someone.”

To help determine if your child is in fact having a meltdown, look for a few of these key signs:

• Is your child watching you to see your reaction?
• Are they aware of their surroundings?
• Are they concerned with their own safety?
• When the episode ends, do they calm down quickly?

A child having a meltdown will typically not be aware or concerned with their surroundings, safety, or even your reaction to them. It’s just the opposite with a tantrum: the child is often trying to manipulate either you, his surroundings, or both in order to get what he wants. With meltdowns, even after the episode is over, it may take a while for him or her to calm down. Whereas, following a tantrum, the child will quickly move on to something else.

Once you have determined whether your child is having a meltdown or a tantrum, your response will likely be very different for each. For meltdowns, here a few ideas:

• Remove your child from an area where they could harm himself or others
• What comforts your child typically? Try to use that during the meltdown
• Be calm and reassuring
• Have a plan in place if the meltdown occurs in a public area
• Noisy, crowded spaces are often the setting for meltdowns due to sensory overload. Keep your trips short and reward your child for good behavior throughout the visit

Because temper tantrums are really power struggles between you and your child, be sure you have a behavior plan that addresses what you should do if this behavior occurs. Consistency is the key. Some other tips that might help are:

• Understand why the behavior is occurring
• Role-play/practice appropriate responses to difficult situations
• Use language that focuses on what you want your child to do, not what you want them NOT to do
• Calm first, teach second

As a parent, I find truth in this quote from Fred Rogers: “I think of discipline as the continual everyday process of helping a child learn self-discipline.” After all, it’s never too early to start building appropriate positive behaviors in your child!

Today’s blog is brought to you by friend and colleague Dr. Sarah Howorth.

Dr. Howorth is an Assistant Professor of Special Education at Mercyhurst University, and a 2015 graduate of the Joint Doctoral Program in Special Education and Digital Leadership at the State University of New York at Buffalo. Her doctoral research focused on the use of technology for instructional purposes in special education, reading comprehension, and students with Autism Spectrum Disorder, and was funded by a grant from the Office of Special Education Programs (OSEP) of the Federal Department of Education.

Recently, Dr. Howorth was awarded the Herb Prehm Student Presentation Award by the Division of Autism and Developmental Disorders (DADD) at the 2015 National Council For Exceptional Children Conference in San Diego. Dr. Howorth has presented nationally on reading instruction for students with disabilities, digital technology integration for instruction, behavior management, and virtual rehearsal for teachers using TeachLivE.

A former special education teacher, with certification in both New York and Pennsylvania, she has taught in Michigan, Pennsylvania, and the Shanghai American School in China. In 2001, Dr. Howorth served as a behavior specialist at the Gertrude A. Barber Center. She is a new faculty member at Mercyhurst University here in Erie, Pennsylvania and has recently returned to live here with her family.

~ Maureen

Reading Comprehension Instruction for Students with Autism without Accompanying Intellectual Disability

As indicated in Dr. Barber-Carey’s last blog post, reading comprehension instruction can be a struggle for teachers of students with Autism. Although many of these individuals learn to read quite well, they often struggle with making inferences and understanding the main idea of both narrative and expository text. This can have negatives implications on their academic success in both middle school and high school.

Block et al. (2009) indicate that focus on academic reading for understanding is emphasized after grade three, rather than learning to read. In order to comprehend what they are reading, learners need to process the information embedded within the text, integrate it with their own prior knowledge, and monitor their own understanding of what is being read in order to make inferences about what is not explicitly stated in the text (National Institute of Child Health and Human Development, 2000). Cognitive processing styles of students with ASD must also be taken into consideration when designing instructional interventions.

Skilled readers must use information from their own background, the text clues, and the context in which they are reading (e.g. leisure, academic, instructions) in order to make meaning. Students with ASD have many areas of cognition impacted by their neurological differences, including metacognition, abstract thought, and interpretation of language (Boutot & Myles, 2011) Only three studies have investigated literal and inferential reading comprehension and students with high functioning autism spectrum disorder (Kamps et al., 1989; Kamps et al., 1994; O’Conner, & Klein, 2004).

However, in the Thinking before, While, and After reading (TWA) strategy used by Mason (2004; 2013), accessing prior knowledge is taught first, then the student is guided to think and verbalize what they want to learn from what they are reading. Students with ASD require support such as this to make connections between abstract ideas (Wahlberg & Magliano, 2004). The final step of the TWA strategy (Mason, 2004; Mason, 2013) involves summarizing what has been learned, and retelling of the information in the students’ own words.

Again, making global connections such as this is a skill that requires explicit instruction, especially for students with ASD (O’Conner & Klein, 2004).   I have conducted two studies that investigated the functional relationship between learning how to use the TWA strategy and the reading comprehension of middle school students with high functioning autism spectrum disorder. One of them is currently under review for publication in an international special education journal.

The results of both studies indicate that students with autism need to be explicitly taught self-regulated reading strategies such as TWA, and also benefit from the task analysis style list of steps involved with this strategy. When paired with highlighting of text to provide a visual guide for summary retells, reading comprehension greatly increased for all of my participants. The strategy can be taught using either paper-based or digital (i.e. PDF) texts.

*Images copywright Sarah Howorth, 2015

References

Block, C. C., Parris, S. R., Reed, K. L., Whiteley, C. S., & Cleveland, M. D. (2009). Instructional approaches that significantly increase reading comprehension. Journal of Educational Psychology, 101(2), 262-281. doi:10.1037/a0014319

Boutot, E. A., & Myles, B. S. (2011). Autism Spectrum Disorders: Foundations, Characteristics, and Effective Strategies. Pearson: NY.

Howorth, S. (2014). Effects of TWA strategy on expository reading comprehension of students with high functioning autism spectrum disorder. Manuscript submitted f   or publication.

Kamps, D. M., Dugan, E. P., & Leonard, B. R. (1994). Enhanced small group instruction using choral responding and student interaction for children with autism and developmental disabilities. American Journal On Mental Retardation, 9960-73.

Kamps, D., Locke, P., Delquadri, J., & Vance Hall R. (1989). Increasing academic skills of students with autism using fifth grade peers as tutors. Education & Treatment of Children, 12(1), 38-51.

Mason, L. R. (2004). Explicit self-regulated strategy development versus reciprocal questioning: Effects on expository reading comprehension among struggling readers. Journal of Educational Psychology, 96(2), 283-296. doi:10.1037/0022-0663.96.2.283

Mason, L. H. (2013). Teaching students who struggle with learning to think before, while, and after reading: Effects of self-regulated strategy development instruction. Reading & Writing Quarterly: Overcoming Learning Difficulties, 29(2), 124–144. doi:http://dx.doi.org.gate.lib.buffalo.edu/10.1080/10573569.2013.758561

Mason, L. H., Hogan, H. P., Walter, A. A., Meadan-Kaplansky, H., Hedin, L., & Taft, R. (2013). Self-regulating informational text reading comprehension: Perceptions of low-achieving students. Exceptionality, 21(2), 69–86. doi: 10.1080/09362835.2012.747180

National Institute of Child Health and Human Development. (2000). Report of the National Reading Panel. Teaching children to read: An evidence-based assessment of the scientific research literature on reading and its implications for reading instruction (NIH Publication No. 00-4769). Washington, DC: U.S. Government Printing Office. Retrieved from https://www.nichd.nih.gov/publications/pubs/nrp/Documents/report.pdf

O’Connor, I., & Klein, P. (2004). Exploration of strategies for facilitating the reading comprehension of high-functioning students with autism spectrum disorders. Journal of Autism and Developmental Disorders, 34(2), 115–127. doi:10.1023/B:JADD.0000022603.44077.6b

Wahlberg, T., & Magliano, J. P. (2004). The ability of high function individuals with autism to comprehend written discourse. Discourse Processes, 38(1), 119–144. Retrieved from http://www.erlbaum.com/Journals/journals/DP/dp.htm

I was fascinated to learn about a reading program that improves brain connectivity in students with autism. Ryan was an early reader. He had a very large sight vocabulary by age 4. However, as he moved into primary grades, I was very concerned about his comprehension skills. He was a great reader, but did he truly understand what he was reading?

Unfortunately, he did not. Difficulties with comprehension were a problem for Ryan throughout his school career. That’s why I was excited to read about a program that capitalizes on the strengths of students with autism. Not only does it improve comprehension, but it establishes new connections between the areas of the brain that are involved in understanding language.

In a study of 13 children with autism who were between the ages of 8-13, students participated in 200 hours of instruction using the Visualizing and Verbalizing Program. An age-matched group of children who also had autism but did not participate in the VVP acted as the control group. Reading comprehension tests and a fMRI, tracking brain activity and connectivity, were administered as both a pre-test and a post-test, to measure results. Investigators found increased brain activation and connectivity between two of the brain’s core language areas as well as improved reading comprehension for the children in VVP. By contrast, the children in the control group showed no significant changes in either area.

I was excited about this program because it speaks to one of my favorite quotes: “If a child cannot learn in the way we teach, we must teach in a way the child can learn.” I plan to look into VVP to see about incorporating it into our school program. Who knows, maybe Ryan would still benefit from it. It’s never too late to learn!