It’s Cool to be Kind!

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?

IAWA445-RED-TH-DESIGNThis 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?

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Top Research Studies of 2019

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.

research

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.

autism

“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.

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Expanding Communication Opportunities

Amy M

Amy Moczulski, M.A., CCC-SLP

I sat down with Amy Moczulski, M.A., CCC-SLP, speech-language pathologist at the Barber National Institute. Amy’s role in the classroom is to assist students in learning to use augmentative and alternative communication (AAC) devices, and this past year, she began a project with Tobii Dynavox’s Marleah Herman-Umpleby, M.S., CCC-SLP working with adults in our group homes.

Amy told me the idea began at one of our monthly Technology Device Committee meetings, where discussion had shifted from what we were accomplishing in the school to replicating those efforts in the adult division.

“Learners with complex communication needs requiring AAC typically receive the necessary services to meet their language needs while in a school-based setting,” Amy stated, “however, there is a lack of continuity and support when transitioning out of the school systems.”

Three participants were chosen, two in Erie and one in Pittsburgh. Thanks to a grant from Erie Insurance, the group homes already had Microsoft Surface tablets available. Amy’s objective was to determine if communication opportunities could increase by utilizing the Surface tablets and Tobii Dynavox’s software, Snap Core First.

Tobii Dynavox Snap Core First

The scope of the project was to provide training and support to group home staff in order to provide the residents with meaningful communication opportunities throughout their daily routines through the use of AAC.

Challenges included staff turnover, lack of staff communication between shifts, and overall limited staff training on complex communication needs and AAC.  Additionally, the selected residents did not have personal tablets, which limited communication opportunities.

Despite the challenges, there were major successes with two of the participants, Missy and Will.

Missy had a strong intent to communicate with the group home staff and visitors. Using Snap Core First, Missy had a clear understanding of selecting icons on the screen to activate the speech output. Through use of the device, she found topics that interested her and her social interactions with the staff and her housemates increased. Because of this success, Missy now has her own iPad.

Will

Will using Tobii Dynavox’s software, Snap Core First

Meanwhile, Will made a connection with his housemate on his first night using the device, and continued to connect with visitors while watching sports on television. With continued use, staff reported less behavior issues and an increase in Will’s natural speech and engagement. Will also now has his own personal iPad with the Snap Core First software.

So what are the next steps?

“Expanding AAC across all programs,” said Amy, “not just in their home, but in the day program, work and the community. We would like to continue building independence in teams, expand to other participants, and create a series of videos demonstrating use in the home for residential staff and families.”

Amy Moczulski and Marleah Herman-Umpleby presented the project’s success this past fall at the annual American Speech-Language-Hearing Association (ASHA) convention in Florida.

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Happy National School Choice Week!

Why are Elizabeth Lee Black School students unpacking their yellow fleece scarves, signs and other materials???? It is National School Choice Week!

Starting last Monday, National School Choice Week is the largest ever celebration of opportunity in K-12 education… Millions are participating in over 51,000 events and activities from coast to coast.

This week is inclusive, positive and welcoming with the goal of raising awareness of all educational options:  public, charter, private, magnet, online and homeschooling. Hopefully, families can find schools and learning environments that best meet the needs of their children.

In Erie Country, we have a number of options available which is not the case in many communities.

Our students made artwork showcasing why they love their school!

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The Playhouse Returns

passitThis is an exciting week for us at the Elizabeth Lee Black School because the Erie Playhouse again returns to us!

Today is our first play practice!

The Playhouse has been coming to the ELBS for nine years but this will only be the third year that we will be anticipating our finale on the LECOM stage at the Playhouse.

Trisha Yates, Erie Playhouse director, producer, and creative artist par excellence, has selected the book “Pass It On” by Sophy Henn.

“Pass it On” is the story of a young lady who spreads joy to others by sharing good experiences and feelings, whether it is a smile, a hug, a happy face or a moment of wonder.

Twenty six of our students between the ages of 6-16 will be on the stage on May 22nd as they attempt to become the next Meryl Streep or Brad Pitt.

Mark your calendars; you will be receiving a formal invitation.

I can guarantee you that the next 4 months will be a busy, exciting and happy time for our students!  Pass it on!

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Until next week…

Unfortunately, I have been “under the weather” with a bug this week and have not been able to write my weekly column. I am feeling much better.

See you next week!

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Updated Guidelines for Identifying and Evaluating Children with ASD

In past blogs, I have discussed Ryan’s diagnosis in 2005 at 18 months of age. Ryan had expressive language delays at 12 months, which I had discussed with his pediatrician, but as he was “on par” in his overall developmental skills, I never thought “autism.”

Instead, I enrolled him in a language play group. It was a few months later after testing by an audiologist (his aunt), that she recommended that “Uncle Joe,” a pediatrician/pediatric neurologist, evaluate him. And so Ryan received diagnosis of Autism.

autism

So jump forward 15 years until today. The American Academy of Pediatrics (AAP) recently released new guidelines as to the early diagnosis/treatment of Autism Spectrum Disorders as well as comorbid or co-occurring conditions through adulthood. Included in the report is a discussion of family support. The previous AAP publication was in 2007. In those 12 years, we have seen a dramatic increase in the diagnosis of ASD to 1 in 59 children.

AAP continues to recommend screening at 9, 18 and 30 months with ongoing surveillance performed by pediatricians/primary care providers through school age. Special consideration should be given to children who have risk factors such as older siblings with autism, preterm birth, and children who have been exposed to teratogens such as valproic acid.

20170119-autism-eventThe AAP also endorsed the plan of the Interagency Autism Coordinating Committee of the National Institute of Health to improve research efforts to better understand the origins of the disorder as well as clinical trials to test novel treatment strategies. I found it interesting that the AAP also now focused on the importance of preparing youth and families for transition to Adult services. I concur wholeheartedly with this goal. I remember when Ryan was 10 years old and Uncle Joe said, “It’s time to plan for transition.”

In conclusion, there were no “earthshaking” findings, but a continued emphasis on the early, intense, and family-driven treatment of Autism.

Yes, we have come a long way since 2007, but it is a journey that we must continue. The article in its entirety can be found at: https://www.medpagetoday.com/pediatrics/autism/83898?xid=nl_mpt_DHE_2019-12-16&eun=g419639d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Top%20Cat%20HeC%20%202019-12-16&utm_term=NL_Daily_DHE_dual-gmail-definition

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Ringing in the New Year!

As I began considering the upcoming new year and new decade, I thought about my New Year resolutions. I am sure that many of you, as I do, make them but quickly tuck them away into forgotten memories.

So I decided to go in a different direction.

I started researching inspirational quotes which could in fact be the resolutions I live by this coming year. There were so many, it was difficult to choose!

A few that I found especially meaningful are listed below.

“Act as if what you do makes a difference, it does.” –William James

“Believe that you can and you are halfway there.” –Theodore Roosevelt

“Love yourself first and everything else falls in place.” –Lucille Ball

“Every day may not be good, but there is something good in every day.” –Unknown

“Be the change that you wish to see in the world.” –Mahatma Gandi

“Nothing is impossible; the word itself says ‘I’m possible’.” –Audrey Hepburn

“You do not find the happy life, you make it.” –Camilla Kimball

So, my resolution for 2020?

I plan to establish the right intentions so that I stay positive and optimistic regardless of the challenges the fates may throw at me. I am going to embrace what I can control and let go what I cannot. I plan to celebrate the joys of life whenever and wherever I can.

Your resolutions?

2020

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Christmas Memories

As Christmas is now only two days away, I began thinking of Christmas past……

Christmas was always an important day in the Barber household.

Mother LOVED decorating the house for Christmas and she would take days to completePicture4 her decorating.

And, yes, we had lots of Christmas birthdays. Joe’s birthday is Christmas, mine is the 27th and JoAnne’s was the 3rd. Since we were close in age, we always had one large birthday party and for many years it was at Evan’s Skateland on West 8th Street.

On Christmas day we would go to Church at St. Peter’s after opening our presents. Then it was on to, as my father called it, the Barber ranch/family home. Santa (Uncle John) always made an appearance. We believed in Santa until we were quite old as we knew that it wasn’t possible for our parents to buy us birthday AND Christmas presents!

Picture5Once we were teenagers, we began going to Midnight Mass and then on to our great friend, Louise Behringer’s home for brunch. Looking back, I can’t even imagine brunch at 1:30 AM! But we did!

Our Christmas’ changed as we finished college and some of us moved out of town. However, you could always count on mother decorating every corner of the house and having a “live.” tree. So, fast forward until today.

I continue my Mother’s tradition of loving to celebrate Christmas!

Ryan and I begin by purchasing a tree on the Saturday after Thanksgiving, and decorating the tree and the house so that on his birthday, December 2, the house has “come alive” with the Christmas spirit!

I am sure that you, too, have many wonderful memories of Christmas.

Enjoy!

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Cause for Sainthood

Picture1The Most Reverend Lawrence T. Persico, Bishop of Erie, announced yesterday that he issued a decree on December 12, the feast of Our Lady of Guadalupe, opening the cause for canonization of Gertrude Barber. It is one of the first steps in a process that likely will take decades or longer.

“It is an honor to open the cause for sainthood for Dr. Gertrude Barber,” Bishop Persico said. “Her family members, and the thousands of families who have been touched by the work she initiated in her lifetime, are surely thrilled to be part of this historic moment. But I am particularly pleased that the good work of Dr. Barber, motivated by her Catholic faith and undertaken on behalf of those in need, will now be known more fully by those throughout our region and beyond.”

With the historic announcement, a formal inquiry will begin a review of her life, work and holiness. Dr. Barber left a legacy of deep compassion and groundbreaking advancements in educating and empowering those with intellectual disabilities in her nearly 70 years of service.

Merciful Father,

You guided Your servant Gertrude Barber
to a lifetime ministry of bringing hope to children and their parents
as they faced the often overwhelming challenges
of living with autism and disabilities,
while inspiring us to recognize all individuals
as people of God.

We know you hear our prayers as we gather in Your name:

If it is in Your design that Gertrude be glorified by the Church,
so as to further her extraordinary mission,
show us Your will. Grant us the grace to hear Your answer
and commit ourselves to take up her cause
by the merits of Jesus Christ, Our Lord, Amen.

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