All About Autism

Governor Wolf closed all PA schools for the 2019-20 school year. So, are you wondering what is happening for the students of the Elizabeth Lee Black School?

I wanted to provide you a very brief overview of what we are doing.

Every school district and Approved Private School were asked to develop a Continuity of

 Education Plan. There were two basic options, planned instruction via online learning or enrichment. Based upon our students’ needs, we determined enrichment is the most appropriate direction.

The goal of our plan is to support our students in maintaining and developing skills while they are away from traditional school environment.

Our Plan follows the mission of the Barber National Institute of “Making dreams come true.”

We are providing parents with weekly educational activities and therapies along with

ongoing contact with our faculty. Packets are being mailed to families who prefer not to access the materials electronically.

As we serve a very diverse group of learners, all of our programs are individualized and designed based on each students’ strengths and needs. We are consulting with parents to determine the most appropriate ways to meet their child’s learning needs during this period of closure. No two programs may look alike.

The Plan in its entirety can be found at https://www.barberinstitute.org/uploads/Covid19%20Updates/ELBS%20Continuity%20of%20Education%20Plan.pdf

Do you have some questions about the plan? Please give me a call.

During these challenging days, we remain committed to our children and families to provide them with the education and support that they need. We miss our students and families.

Stay safe and healthy!

Although The Random Acts of Kindness calendar was created for the workplace, I thought that it had some great ideas for us as we shelter in this holiday weekend.

Did you know that science shows that the positive effects of kindness are experienced in the brain of those who participated in, received or witnessed the act, improving their mood and making them significantly more likely to “pay it forward?” This means one act of kindness in a crowded area can create a domino effect and improve the day of dozens of people! You can be that person. Imagine if those small acts changed the culture of our community. Read on.

• Make kindness the norm
• Take good care of yourself
• Show a little love
• Be brave, be you
• We are one
• Move forward by giving back
• Do the right thing
• Explore your passions
• Together, everyone achieves more
• Today is a wonderful day
• Respect

From my household to yours, have a happy, healthy, and safe Easter!

A parent commented that they enjoyed reading my last blog regarding activities during these challenging times, but wished there were more for adults. I agreed and have given more thought to her suggestion.

Our adults are now experiencing:

• Sudden change in routines and activity
• Experiencing heightened anxiety and worry
• Fear of the unknown

What can we do?

Establish a new routine and schedule. Your son or daughter may not be going to work, to the gym or visiting his/her friends. So what does he/she do now?

Let your son or daughter create the schedule with your support and guidance as necessary. This should include some of his/her preferred activities, physical exercise, leisure skills, chores around the house and activities of daily living. Perhaps there are skills that you would like your child to learn?

For Ryan and me, it is cooking. Typically, we are rushing at breakfast; he goes out to lunch after his job and then usually gets home from the gym right before dinner. So now we are building in time for “chefing.” Also, as April is here, we can consider outdoor spring cleanup as both a physical activity and an outdoor chore that may use pent up energy.

To help deal with anxiety, work opportunities into the day to practice coping techniques. This may be deep breathing, mindfulness activities, or simply how your child best relaxes. Practice, practice, practice throughout the day!

Another consideration is that part of his/her anxiety may be fear of the virus. Approach this openly and provide answers on the level your child understands. But, if he/she chooses not to discuss the topic, don’t force him/her.

Don’t forget the internet – there are many virtual tours and live camera feeds of museums, zoos and famous landmarks around the world.  Ryan and I visited some together this weekend. The activities on the Barber webpage are also updated weekly. You can find them at www.barberinstitute.org under COVID-19, Online Learning Activities.

I hope that these thoughts provide you with some ideas during these very long days.

Stay safe and healthy!

Many families have asked if I had any tips for parents, so I wanted to share a few of my thoughts.

Daily Routine

• Create and maintain a daily routine. Use a daily activity schedule including visual prompts to help your child know what is coming next. Children are used to a set schedule when they are in school, so it’s crucial that they continue to have consistency and predictability at home. Write the daily plan on paper, a whiteboard, poster board – whatever you have available. Be sure to let your child participate in the scheduling.
• Set a timer – This keeps children on-task and focused. The timer will allow them to visually or auditorily track how much time they need to attend to an activity. You can use a timer for fun or free time activities as well as academics.

What should be on the schedule?

• Work on the academics your child is doing at school. This can be a great time to “practice” those skills as well as his/her daily living skills. Have your child assist with household chores. Certainly, include time for preferred leisure. Physical exercise is a must!
• Limit device use. Let them play their digital games and watch TV but put it on the schedule as a “free activity” and use a timer to help limit their use. Encourage use of educational apps and games.

Determine what he/she knows and feels about the virus.

• For those who are verbal, discover if they are worried and what they are worried about. Don’t dismiss their fears with an easy, “You’ll be fine.”  Listen and reflect back what they are saying.  Validate their feelings.   After you have listened, offer some support and coping mechanisms.
• Speak at a level that he/she will understand. For instance:  This illness is different because it’s new.   People are working really hard to make sure it doesn’t spread and make lots of people sick.  That is why we’re staying home, so no one gets sick.  If someone does get sick, the doctors will take care of them.  Doctors and scientists are working really hard to figure this out.

Coping Strategies

• Offer simple coping strategies such as counting to 10, taking deep breaths, making a list of the things we are grateful for or taking a walk. It is important to help your child feel a sense of control in managing his/her feelings. Teach coping skills when your child is calm. Follow up with daily practice at a set time.

Take care of yourself, eat well, get enough sleep and exercise.

• Keeping your own anxiety in check will help you to stay calm for those around you.

Where can I go to get information on activities?

• Each school district is approaching this differently, so I’d suggest you go to their webpage.
• We have many learning resources are available on the Barber National Institute’s webpage for preschool and K-12 for multiple subjects, including math, reading, and science: https://www.barberinstitute.org/online-learning-activities
• Another thought is to consider virtual tours, which are are also available online for many national and international museums, zoos, and even theme parks.

I care deeply about the wellbeing of our community and urge everyone to stay home, stay safe and stay healthy. These are challenging times, but we’ll get through together. We are here for you.

I invited Mom, Brianne McClellan, to share her thoughts in this week’s blog on World Down Syndrome Day.

-Maureen

I enter the door at daycare and see him sitting in his usual chair, by himself, listening to an audio story of “Pete the Cat” from the cd player. All the other kids are running around, screaming, playing and interacting with each other. “Hey Noah!” I say as I approach my son. He sees me and does his usual greeting; gets up and walks over to me, and then when I kneel down he hugs me for a while without letting go. When he finally lets go, he signs part of the alphabet for me to see, “a-b-c-d-e,” he’s so proud of himself. Then, he grabs my hand and takes me over to a book and points to a horse and signs, “horse.” So I sign “horse” back and make a horse sound. As we walk over to his cubby to get his coat, he towers over the other children in the Toddler classroom because they are probably 3 and he is 9. One child comes up to me and asks me, “Does he talk?” I smile at the child and say, “No. But he signs words.” That’s about all I could say as I was stepping over toys, gathering Noah’s school belongings, and chasing him out the door.

Noah was not only blessed to be born with Down syndrome, but he also has autism and is non-verbal. Before Noah was born, we knew we had an over 50% chance of Noah having Down syndrome. After the initial shock, I was ok with that and started getting educated and prepared. I fully expected Noah to attend public school, join the golf club in high school, have a job, possibly get married someday, and even live on his own with his family or a group home. Then when he was around 2, he was diagnosed with autism. It is said that less than 20% of people with Down syndrome are dual diagnosed with autism. I guess we were one of the lucky ones. My thoughts of the future definitely changed at that point and in the years following.

My thoughts may have changed regarding Noah’s independence as he ages, however, Noah’s uniqueness has shined through and taught me more than what I thought I knew or wanted. What I have found is that Noah brings more joy to life than I ever could. Noah walks into a restaurant and people smile. I drop Noah off at school and the Principal tells me that the staff always enjoys when Noah comes down to deliver papers to their office. Even though Noah doesn’t speak, he amazes people all the time. He shows his intelligence in so many ways, and he loves being praised for it! He shows his sweetness every day with hugs and smiles.

Anyone who knows Noah or someone like him is lucky. They will open your eyes to a kinder world. They will open your hearts to empathy. And they will open your minds to think beyond yourself and what you can do for others. We are lucky to have people like Noah in our world. We can learn so much from them.

Last Wednesday was “Spread the Word to End the Word.” Started as a simple website by the Special Olympics in 2008, it has grown to a nationwide campaign involving schools and universities across our country, all with the goal of ending the use of the R-word in everyday language.

Although some people might not consider the R-word to be a slur, to millions of individuals with intellectual and developmental disabilities, that is what it can feel like. We know that language has a huge impact on attitudes and actions. By eliminating the R-word from usage, we can work on creating more accepting attitudes and inclusive communities for all.

A bit of history:

In 2010, President Obama signed “Rosa’s Law,” which was inspired by a Maryland woman with an intellectual disability. The bill garnered unanimous support in passing both the House of Representatives and the Senate. Rosa’s Law was commemorated in a White House ceremony with an 11-member delegation of Special Olympics athletes, leaders and self-advocates present to celebrate the milestone. Starting that year, federal agencies dropped the terms “mental retardation” and “mentally retarded” in federal health, education and labor laws and replaced them with “intellectual disability” and since then, almost every state has passed similar legislation. Pennsylvania has done so.

My experience with the R-word goes back to my days as a special education teacher in the Erie School District. I was the teacher of the “R” students, so I could see on a daily basis how my students reacted to being called this. As this left an impression on me to this day, I am one of the most vehement advocates of abolishing this word from everyone’s vocabulary.

I encourage you to sign the petition to not use the R-word: http://www.r-word.org/r-word-take-action.aspx#.VPR5LfnF98F

…and tell your friends and family!

The first week of March is one of my favorite weeks of the school year. It is not only Read Across America Week, but also Dr. Seuss’s birthday and World Book Day. I love reading! As a child I was probably called “book worm” hundreds of times, because my favorite activity was reading…and still is as an adult.

Reading has the power to transport you to new places, learn new ideas, and become a true citizen of the world. But, there are a number of other reasons why reading is so important.

Reading:

• Trains your body/mind to slow down, relax and focus on what you are reading
• Improves your memory
• Builds a bond between you and your child as you provide him/her with 1:1 positive attention
• Expands your child’s language and literacy skills

So how do we get our children excited about reading? This can be a special challenge if your child struggles with reading. I have found nonfiction books that allow the child to relate to real life people, places and events are the best course. Another thought: What are his/her high interest topics?

The “2020 What Kids are Reading” from Renaissance is a great resource. It aggregates national reading data by grade level and provides nonfiction and fiction books that children are reading by state. Check it out at https://www.renaissance.com/wkar-report/

As I look back, Ryan started reading words when he was 3 years old and quickly moved on to the short “Bob” books. As he continued in elementary school, I realized that although he was very fluent, his comprehension skills were very weak. This was a struggle throughout his educational career. He never developed my “love of reading,” but I am still not giving up!!!

As Dr. Seuss said, “The more you read, the more things you will know, the more you learn, the more places you will go.” I concur!

I find it difficult to keep up with the latest advancements in educational technology when so many digital devices, educational software and mobile apps are in constant development. In 2012, Digital Learning Day began as a way to actively spread innovative technology throughout the nation and ensure that all youth have access to digital learning opportunities.

When we first began participating in Digital Learning Day in 2014, it was an “in-house” event with school staff and students showcasing the technology they used in their classrooms. Since then, the presenters have expanded to include other programs within the Barber National Institute, outside agencies such as Tobii Dynavox, and local high schools and universities. Eventually, the event became too large for the Barber Center’s North Lobby, so we relocated to our gymnasium!

Thursday will be the Barber National Institute’s 6th consecutive year celebrating Digital Learning Day. We are open from 11am-1pm and we encourage the public to come and see what’s offered! There are numerous prizes and giveaways, as well. If you aren’t able to attend, you can watch us stream live on Facebook.

A special thanks to Nina Wolfarth, B.S., Early Care Coordinator, and Zachary Bair, B.S., Technology Coordinator, for cochairing our event.

For more information about Digital Learning Day, visit, https://digitallearningday.org/

As I was walking through our hallway today, I noticed a “random act of kindness.”

One of our five-year-old students was in line behind a younger child. When the younger child dropped his paper, the older child picked it up and immediately handed it to him saying, “Here is your paper.”

I thought, how sweet!  Perhaps his Mom or Dad had encouraged him to help others? Was it his teacher who taught him the importance of kindness? Or had he seen others act in such a manner and he was modeling their behavior?

Perhaps, it was a combination of all of the above?

This got me thinking about how Ryan and I have talked about kindness over the years.  It is a discussion that we have had frequently, as I believe that what sets us apart as an individual is how we treat others.

But talking about kindness is only a part of the equation; kindness is best learned by feeling it and then reciprocating…being kind to others.

So, part of our nightly dinner conversation centers around what acts of kindness each of us did that day.  Who did the most?????

As I was writing about kindness, I was pleasantly surprised to read that Autism Speaks has declared 2020 as the Year of Kindness.  Their goal is to achieve one million acts of kindness before the year’s end to create a more inclusive, kinder world for the autism community.

They have created many resources, available on their website:  autismspeaks.org/kindness

Ryan and I are going to sign up for the kindness break…why don’t you?

Autism Speaks science leadership and Medical and Scientific Advisory Committee recently announced its top ten autism studies of 2019. These selections were based on more than 2,000 research reports published in scientific journals. Many I have discussed in previous months’ autism research reviews. Some amazing new directions to consider!

-Maureen

Note: Order does not imply relative importance.

Screening and intervention

A Pivotal Response Treatment Package for Children With Autism Spectrum Disorder: An RCT. Gengoux G, Abrams D, Schuck R, et al. (2019). Pediatrics. 144. e20190178. 10.1542/peds.2019-0178.
In this study, researchers compared a common behavioral intervention called Pivotal Response Treatment (PRT) with a version of PRT that included parent training in how to use PRT at home. PRT was more effective when parents were included, suggesting that consistency across a child’s environment supports greater progress in communication, social and behavioral skills.

A Multisite Randomized Controlled Two-Phase Trial of the Early Start Denver Model Compared to Treatment as Usual. Rogers SJ, Estes A, Lord C, et al. Journal of the American Academy of Child and Adolescent Psychiatry. 2019 Sep;58(9):853-865.
This test of a common early intervention technique, known as ESDM, compared its effectiveness with the existing standard interventions for young children with autism. One goal was to replicate earlier findings of ESDM’s effectiveness, which the study did find held true for language skills but not for autism behaviors.

“Both studies [of PRT and ESDM] demonstrate the progress being made in meeting standards for rigorous tests of early interventions: randomization, blinding of assessors, independent analyses, and most importantly attempts at replication of earlier findings,” said Connie Kasari, Professor of Human Development and Psychology at the UCLA Graduate School of Education & Information Studies and Professor of Psychiatry at the David Geffen School of Medicine at UCLA.

Improvements in the standard of autism care in community settings may have played a role in the partial findings in the ESDM study, Kasari suggested. “As the field of intervention science continues to mature, more attention to replication and deployment into the community is essential. Earlier effectiveness is much smaller when the same study is repeated years later due to improvements in community practices generally.”

Effectiveness of community‐based early intervention for children with autism spectrum disorder: a meta‐analysis. Nahmias, AS, Pellecchia, M, Stahmer, AC, and Mandell, D.S. (2019). Journal of Child Psychology and Psychiatry, 60: 1200-1209.

The meta-analysis of community practice suggested, however, that we are not doing very well in this regard, Kasari said.

“Nahmias and colleagues examined treatment as usual groups in early intervention trials to determine if over time we are getting better at improving child outcomes in the community. The result was discouraging, except for when trials were conducted near academic settings such as in the first two papers,” Kasari noted. “These conflicting interpretations require further investigation with the goal that we get a better handle on which treatments are effective for whom, and when.”

Advances in health equity and lifespan issues

Assessment of racial and ethnic bias in autism spectrum disorder prevalence estimates from a US surveillance system. Imm P, White T, Durkin MS. Autism. 2019 Nov;23(8):1927-1935
In this study of data from national autism monitoring sites used to calculate prevalence estimates, researchers found that children excluded from those estimates were more likely to be Hispanic or non-Hispanic black. For Hispanic children, exclusion was more likely to be due to lack of residency information, and both groups were more likely to have missing relevant health records. Although the exclusion of their data would not have affected estimates of prevalence, this study highlights the lack of access to care for developmental evaluation in underserved groups.

Accuracy of Autism Screening in a Large Pediatric Network. Guthrie W, Wallis K, Bennett A, et al. Pediatrics. 2019 Oct;144(4). pii: e20183963. doi: 10.1542/peds.2018-3963.
To test the accuracy of the M-CHAT, a common autism screening questionnaire, researchers at Children’s Hospital of Pennsylvania were able to get all pediatricians in their health network to use the M-CHAT as the recommended autism screening pediatricians are recommended to conduct at 18- and 24-month checkups. They found that it was less accurate with a broader population than it was tested in research studies. It also highlighted delayed diagnosis for children of color in the network.

“These two large studies identify disparities – in screening, detection, and diagnosis of ASD – associated with racial, ethnic, and socio-economic characteristics. So, we now have substantial empirical evidence of these types of health inequities in ASD,” said Stelios Georgiades co-director of the McMaster Autism Research Team, at McMaster University and Hamilton Health Sciences, in Hamilton, Ontario. “What is needed is action toward the development and testing of more comprehensive outreach methods to reduce disparities and increase access to services for all.”

Broken bridges-new school transitions for students with autism spectrum disorder: A systematic review on difficulties and strategies for success. Nuske HJ, McGhee Hassrick E, Bronstein B, et al. Autism. 2019 Feb;23(2):306-325.

This study analyzed the research of autistic students transitioning to new schools to uncover what was difficult for students, their families and teachers, as well as support strategies that were effective. Researchers found that anxiety and social pressure affected the students, while parents were similarly worried about their children’s well-being. Teachers were found to have inadequate resources to give appropriate support to transitioning students. Effective strategies to support new school transitions included personalized support, parent information on the transition process, and improved communication between schools as well as between school and home. This paper highlights the need to develop systems of support that guide students and families through school transition in a comprehensive, effective way to reduce stress and increase chances of successful transition.

Trajectories in Symptoms of Autism and Cognitive Ability in Autism From Childhood to Adult Life: Findings From a Longitudinal Epidemiological Cohort. Simonoff E, Kent R, Stringer D, et al. Journal of the American Academy of Child and Adolescent Psychiatry. 2019 Dec 18.
Simonoff and colleagues conducted the first longitudinal study of a group of children with autism through early adulthood that tracked cognitive skills and autism symptoms. They found that certain groups of children saw higher IQ scores as adults and was linked with their early language skills and type of school environment. Children who attended mainstream schools, rather than specialist schools, had fewer autism symptoms as adults.

“The use of population-level data to study trajectories in ASD allows for increased generalizability of research findings. At the same time, the relatively small sample size (n=126) of this study highlights the challenges associated with longitudinal research in ASD,” said Dr. Georgiades. “There is a need for the ASD community to work toward larger collaborative studies using a lifespan approach.”

Advances in Genetics 

Association of Genetic and Environmental Factors With Autism in a 5-Country Cohort. Bai D, Yip, BHK, Windham, GC, et al. JAMA Psychiatry. 2019 Jul 17.

Identification of common genetic risk variants for autism spectrum disorder. Grove J, Ripke, S, Als, TD, et al. Nature Genetics. 2019 Mar;51(3):431-444.

Inherited and De Novo Genetic Risk for Autism Impacts Shared Networks. Ruzzo EK, Pérez-Cano L, Jung JY, et al. Cell. 2019 Aug 8;178(4):850-866.e26.

“The first study examined genetic and environmental factors contributing to autism in Denmark, Finland, Sweden, Western Australia and Israel. Estimates of additive genetic risk ranged from 51 percent in Finland to 87 percent in Israel and estimates of environmental risk ranged from 13 percent in Israel to 35 percent in Finland,” said Ed Cook, Earl M. Bane Professor of Psychiatry, Director of the Program for Neurodevelopmental Disorders and Director of the Division of Child and Adolescent Psychiatry at University of Illinois-Chicago College of Medicine.

The second study, by Grove and colleagues, reported the largest genetic study to date, looking for gene changes that are linked with autism. It included more than 18,000 subjects with autism and more than 27,000 control subjects. “Five statistically significant loci were identified and relationships were found between polygenic scores for ASD and several other conditions, including ADHD and major depression,” Cook said.

Finally, Ruzzo and colleagues used a dataset featuring more detailed genetic information via whole genome sequencing looking for new genes that may contribute to autism. They performed WGS on samples from the Autism Genetic Research Exchange, supported by Autism Speaks, of people with two or more affected siblings with autism spectrum disorder. “They also contrasted the biological effects of genes found in these multiplex families to genes implicated by findings in families with only one child with ASD,” Cook said.

Taken together, these three studies represent a shift toward larger datasets, whether through collaboration or through more detailed sequencing available with more sophisticated genetic tests like whole genome sequencing. “ASD risk remains complex and multifactorial,” Cook said.