Wednesday, August 4, 2021

AutismOnt: An Ontology-Driven Decision Support For Autism Diagnosis and Treatment

 Link to Complete Article



 Introduction

Autism Spectrum Disorders (ASD) is an umbrella term that covers a multitude of early-onset neurodevelopmental conditions characterized by a wide array of cognitive, behavioral, and social impairments [1]. The symptoms exhibited by ASD patients are diverse, as ASD is very heterogeneous in its manifestation, with a 4:1 male to female gender ratio and a wide range of symptom severity ranging from highly functioning individuals who can lead a relatively independent life as adults to severely mentally impaired individuals who would require constant caretaking and supervision throughout their lives [2], [3]. Despite the diversity of symptoms, however, most ASD individuals suffer from a reduced quality of life, as even high functioning individuals still face social challenges, which can be a source of distress; furthermore, ASD also incurs a tremendous emotional and financial toll on the family of ASD individuals as well as society as a whole [4].

Research on ASD has progressed rapidly over the past two decades [5]. ASD research, however, is extremely multi-faceted, ranging from basic scientists seeking to understand the molecular and cellular underpinnings of the disorder through utilizing animal models and molecular neurobiology approaches to behavioral scientists working with patients in order to develop new approaches to help the parents and educators better take care of individuals afflicted with this disorder. This diversity in research makes it particularly challenging to bridge the gap between such disparate disciplines; furthermore, as the research environment grows increasingly complex, the development of techniques ensuring the accessibility of this research output to practicing physicians and primary caretakers becomes of paramount importance [6], [7], [8].

Biomedical ontologies have recently witnessed a remarkable increase in popularity as the tool of choice for bridging interdisciplinary gaps and ensuring the widespread accessibility and exchange of information between researchers and professionals with diverse backgrounds and a broad range of specializations [6], [7], [8], [9], [10], [11], [12], [13], [14]. The striking success of biomedical ontologies stems from their ability to provide a comprehensive framework through which investigators can share their findings and where professionals can easily access the studies upon which their diagnostic and treatment approaches are based.

While several biomedical ontologies have been made for autism, they suffer from their focus on specific aspects of ASD diagnostic and risk factor information; therefore, their uses are limited in the scope of their potential applications [6], [7], [8]. In order to address the limitations of the currently available autism ontologies, we sought to develop a universal autism ontology (AutismOnt) that overcomes the existing limitations through exhaustively covering all aspects related to autism researchers and primary caretakers. The expanded hierarchical organization of AutismOnt, makes it one of the most reliable and versatile ontology for the development of future text annotation and decision support systems for ASD researchers, physicians, and caretakers.

Ontologies are used in the medical domain mainly for representing and reorganizing medical terms and terminologies. Building medical ontologies is a challenging task that requires a deep analysis in the medical domain; nevertheless, this analysis is the core of building the medical ontologies that handle issues in the medical field. In this study, the main contributions of AutismOnt ontology are:

•  Developing a universal autism ontology that holds a large amount of the most useful autism knowledge from various sources and covers different autism research directions.

•  Conceptualizing the available knowledge in different aspects of autism and enabling it to be shared and used by the clinical and research community.

•  Providing a comprehensive semantic map for domain terms.

The autism ontology developed in this study unifies some domain terminologies and help practicing physicians and primary care providers in their diagnosis and treatment decisions, which will reflect positively on the autistic individuals' lives.

The rest of the paper is organized as follows: Section 2, summarizes related work. Section 3, methodology is explained. Section 4 the AutismOnt ontology is proposed. Finally, we conclude by pointing out some future research lines.

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Friday, July 2, 2021

Missing Long Island teen with autism found in Virginia, 1 arrested


 YAPHANK, Long Island (WABC) -- A 15-year-old boy with autism who went missing on Long Island has been found in Virginia, and a 19-year-old man is now charged with kidnapping.


The boy, who also has a history of depression, was reported missing by his family on June 29 at approximately 1:30 p.m. and had been last seen leaving his Sayville residence at approximately 11:30 a.m.

Police say what began with the video game Minecraft on a public server several months ago led to an alleged kidnapping -- and that every parent should take note.

"So at some point, they moved into this private chat room where they could speak in complete privacy," Suffolk County Police Commissioner Stuart Cameron said. "And again, this particular application is not monitored."

They say the teen left his home on his bike, telling his mom he was headed to a nearby Carvel. There, police say he ditched his bicycle.

"He had partially disassembled his computer, to make it more difficult," Cameron said.

Following an investigation, detectives determined the boy had been communicating with a 19-year-old man residing in Tennessee through an instant messaging app and had possibly been taken out of state by the individual.

Police were able to track the pair to a rest stop in Virginia, where multiple law enforcement partners were able to locate them sleeping in a vehicle at the rest stop in Montgomery at approximately 1 a.m.

The suspect, James Howard Thomas, of Cookville, TN, was taken into custody and will be extradited to New York to face kidnapping charges.

The boy was released to the custody of family.

The investigation is ongoing, and anyone with information is asked to contact the Fifth Squad at 631-854-8552.

Police are using the case to urge parents to become more informed about what applications their kids are using, and with whom they interact.
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Thursday, July 1, 2021

Autistic individuals more likely to use recreational drugs to self-medicate





While autistic individuals are less likely to use substances, those who do so are more likely to self-medicate for their mental health symptoms, according to new research from the University of Cambridge and published today in The Lancet Psychiatry.

There is significant debate about substance use of autistic adolescents and adults. Some studies indicate that autistic individuals are less likely to use , whereas others suggest that autistic individuals are at greater risk of substance misuse or abuse. The team at the Autism Research Centre in Cambridge used a 'mixed methods' design to consider both the frequency of substance use among autistic individuals, as well as their self-reported experiences of substance use.

Overall, 1,183 autistic and 1,203 non-autistic adolescents and adults (aged 16-90 years) provided information about the frequency of their substance use via an anonymous, online survey; of this group, 919 individuals also gave more in-depth responses about their experiences of substance use.

Autistic adults were less likely than non-autistic peers to use substances. Only 16% of autistic adults, compared to 22% of non-autistic adults, reported drinking on three or more days per week on average. Similarly, only 4% of autistic adults reported binge-drinking compared to 8% of non-autistic adults.

There were also some sex differences in patterns of substance use: autistic males were less likely than non-autistic males to report ever having smoked or used drugs. In contrast, the team did not find differences in the patterns of frequency of smoking or  between autistic and non-autistic females.

However, despite lower rates of substance use overall, the qualitative findings of the study provide a much less hopeful picture: autistic adults were nearly nine times more likely than non-autistic peers to report using  (such as marijuana, cocaine and amphetamines) to manage unwanted symptoms, including autism-related symptoms.

Drugs were used to reduce sensory overload, help with mental focus, and provide routine, among other reasons. Several autistic participants also indirectly referenced using substances to mask their autism. Past research has shown that this behavioural management (also known as 'camouflaging' or 'compensating') has been linked to emotional exhaustion, worse mental health, and even increased risk of suicide among autistic adults.

Autistic adolescents and adults were also over three times more likely than others to report using substances to manage mental health symptoms, including anxiety, depression, and suicidal thoughts. Several participants specifically noted that they used drugs for self-medication. However, this  was not always viewed as negative by participants, and several noted that using recreational drugs allowed them to reduce the doses of prescribed medications for mental health conditions, which was a welcome change due to the sometimes significant side effects from their prescribed medications.

Another area of concern was the strong association between vulnerability and substance use among autistic teenagers and adults. Previous work from the Cambridge team suggests that autistic adults may be much more likely to have adverse life experiences and be at greater risk of suicide than others. The findings of the new study indicate that autistic individuals are over four times more likely to report vulnerability associated with substance use compared to their non-autistic peers, including dependence/addiction, using drugs to deal with past trauma, and substance use associated with suicide.

In addition, the study identified two new areas of vulnerability not been previously reported: being forced, tricked, or accidentally taking drugs; and childhood use of substances (at the age of 12 years or younger).

Elizabeth Weir, a Ph.D. student at the Autism Research Centre in Cambridge, and the lead researcher of the study, said: "Whether or not the substances currently classed as 'recreational' could be used medically remains an open question. It is evident that the current systems of health and social care support are not meeting the needs of many autistic teenagers and adults.

"No one should feel that they need to self-medicate for these issues without guidance from a healthcare professional. Identifying new forms of effective support is urgent considering the complex associations between substance use, mental health, and behaviour management—particularly as camouflaging and compensating behaviours are associated with suicide risk among autistic individuals."

Dr. Carrie Allison, Director of Research Strategy at the Autism Research Centre and a member of the research team, said: "While some of our results suggest lower likelihood of substance use overall, physicians should not assume that their autistic patients aren't using drugs. Drug use can be harmful so healthcare providers should aim to establish trusting relationships with autistic and non-autistic patients alike to foster frank and honest conversations about substance use."

Professor Simon Baron-Cohen, Director of the Autism Research Centre and a member of the team, said: "We continue to see new areas in which autistic adults experience vulnerability: mental health, physical health, suicide risk, lifestyle patterns, the criminal justice system, and so on. Substance use is now another area that we need to consider when developing new forms of support for . It is essential that we ensure that autistic people have equal access to high quality social and healthcare that can appropriately support their specific needs; and, unfortunately, it seems clear that our current systems are still not meeting this mark."



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Tuesday, April 6, 2021

Amid Pandemic, ‘Sesame Street’ Aims To Help Children With Autism Adapt

 

Amid Pandemic, ‘Sesame Street’ Aims To Help Children With Autism Adapt




Julia, left, is a muppet with autism who appears in an upcoming episode of "Sesame Street" and in videos and other materials that are part of the show's online initiative "Sesame Street and Autism: See Amazing in All Children." (Sesame Workshop)

“Sesame Street” is turning its attention to helping kids with autism cope with change.

The venerable children’s show is introducing a new episode and a slate of online videos and activities featuring Julia, a 4-year-old muppet with autism.

The collection of materials is designed to address challenges that families face adjusting to changes in routine and uncertainty generally, something that has become all too familiar during the ongoing COVID-19 pandemic.

“All children depend on consistent routines, which help them feel safe and secure. Disruptions to routines can be challenging, especially for children with autism,” said Jeanette Betancourt, senior vice president of U.S. social impact at Sesame Workshop, which makes the show. “The new resources … feature Julia and her family using strategies to navigate everyday moments and life’s surprises. Together, we can help families manage the stress that comes along with the unexpected.”

In a series of online videos, Julia along with her family and her “Sesame Street” friends work through various obstacles like a pizza that arrives with the wrong topping and a picnic that gets rained out. Similar themes are explored in an accompanying storybook and interactive game. And, there are articles for parents with strategies to help children handle changes in routine.

The latest materials are part of the “Sesame Street and Autism: See Amazing in All Children” initiative, an online array of resources that originally debuted in 2015.

Julia will also appear in a new episode of “Sesame Street” called “Match It!” premiering April 8 on HBO Max and PBS KIDS.

Amid Pandemic, 'Sesame Street' Aims To Help Children With Autism Adapt - Disability Scoop

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Monday, March 8, 2021

For Many With Autism, Masks Are Unbearable. Two Organizations Teamed Up To Change That.

 

For Many With Autism, Masks Are Unbearable. Two Organizations Teamed Up To Change That.

For Howard McBroom, comfort is crucial. Since the Covid-19 pandemic began, though, McBroom has found himself uncomfortable far too often. 

 The culprit? Masks—like millions of Americans, he’s been wearing them to help stem the tide of the coronavirus.  

 McBroom has autism, a developmental disability that impacts a person's verbal and non-verbal communication and social interaction. Many people with autism experience sensory sensitivities, and for McBroom, covering his face with a traditional mask has made it difficult to speak, often causing feelings of claustrophobia.

 This is a reality many people with autism and other sensory needs have faced since the pandemic began. Several months ago, Easterseals Southern California (ESSC), an affiliate of Easterseals national, a nonprofit that provides services to people with disabilities and their families, set out to do something about it. 

 Towards the end of 2020, ESSC heard about a new socially conscious lifestyle brand, Rafi Nova. Rafi Nova, which launched mere weeks before the pandemic began, pivoted from making handbags and accessories to masks. They created the smile mask, featuring a clear panel, for people who are deaf and hard of hearing, restoring the ability to see visual cues and communication. In October, ESSC reached out to see if Rafi Nova would be willing to partner and develop a sensory-friendly mask for people with autism and other disabilities. 

 Immediately, a partnership was formed. 

 "We started to design this mask hand in hand with their team, and it's really been incredible," said Marissa Goldstein, cofounder of Rafi Nova. 

 Rafi Nova pulled together a team that included their core members and designers. ESSC did, too, including speech and occupational therapists, board-certified behavior analysts, and Dr. Paula Pompa-Craven, Psy.D., ESSC's Chief Clinical Officer, who also happens to be a clinical psychologist. At first, they would meet virtually every week to discuss what was inhibiting many of ESSC's participants and other people with autism from wearing traditional facemasks. 

 "We said, here are the things that we have heard, and we've experienced with the individuals that we support," Dr. Pompa-Craven said. "They have difficulty when something is sitting against their face, when there's a lot of like seams and materials that scratch the face, or feel uncomfortable. Many say the masks make them feel like they can't breathe, fogged-up glasses, those types of things. They [traditional masks] sit around your ears, and there's a lot of discomfort and sensitivity around the ear area."

The team at Rafi Nova got to work. They would create a mask and send it to ESSC, who would have children and adults on the spectrum and with other disabilities try the masks. After around five prototypes, they finally created a mask that, according to Dr. Pompa- Craven, "was it." 

The masks align with four S's: soft, structured, secure, and safe. They are made with 100% mulberry silk lining, reducing friction and feeling comfortable on the face. The straps are adjustable jersey knit straps that clasp behind the head instead of pinching the ears. The masks have minimal design and limited seaming. There is an adjustable nose bridge ensuring the perfect fit and decreasing glasses fogging. Plus, the design lifts the mask off the mouth, making it breathable and more comfortable to speak while wearing. 

 But the most unique feature? With every child's mask purchased, a social story is included.

 "With our kids with autism, one of the things that we do a lot in therapy is we use social stories as a way to teach them. We use a combination of stories and photos, and usually they're fairly short, like four or five pictures," Dr. Pompa-Craven said.

 "And so with this one, we said, 'Here's why I need to wear a mask. I need to wear masks because it helps to keep me safe, and it helps to keep people around me safe.’"

 According to the CDC, about one-in-54 children have Autism Spectrum Disorder. About one-in-six children aged 3–17 years (17%) were diagnosed with a developmental disability as reported by parents during a study period of 2009-2017, including autism, attention-deficit/hyperactivity disorder, blindness, and cerebral palsy, among others. 

 On top of that, ASD is the fastest-growing developmental disorder in the U.S., according to the Autism Society.

 Overall, though, autism is a spectrum, and is different for every person diagnosed. 

 That's why ESSC and Rafi Nova set out to create an inclusive mask that would benefit anyone and everyone—disability or not—something McBroom is thankful for. 

"It's great, it's soft, it's comfortable, and it fits on the face well," McBroom said. "They are doing great work together. I wish it would happen more often—that companies would work together to provide products that people need. That doesn't happen nearly often enough."

 Note: The sensory friendly masks featured in this story can be purchased on Rafi Nova's website. Use promo code ESSC and Easterseals Southern California will receive 25% of the purchase.

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As Remote Work Becomes the Norm, Vast New Possibilities Open for Autistic People


 

As Remote Work Becomes the Norm, Vast New Possibilities Open for Autistic People


Technology like Zoom and Slack that eases the pressures of social contact could make jobs much less stressful for people on the spectrum

I’ve long worried about how my autistic son will fare when he enters the workforce. He’s got the sort of autism that used to be known as Asperger’s syndrome: On the one hand, he’s extraordinarily brilliant, incredibly friendly and can do anything he sets his mind to.

Yet his sensory challenges and unique style of social interactions mean that the traditional workplace could be difficult for him. From the overload caused by ambient noise and fluorescent lights to the anxiety of constant conversation, there is a lot about conventional offices that can be challenging for people on the autism spectrum.

It always seemed my son would be more comfortable working on his own, in an environment and on a schedule he could control—but those are options that many people don’t get.

Covid, though, has rewritten the possibilities. By normalizing remote work for everybody, the pandemic has made it easier for people who don’t adapt well to office environments to thrive. The longtime resistance to supporting remote accommodations for disabled employees evaporated when neurotypical (i.e., not autistic) people had to work from home.

At the same time, the growing awareness of neurodiversity—the idea that humans aren’t all wired the same way, and that differences like autism and ADHD also come with unique strengths—means there is more appreciation for what neurodivergent employees can contribute.

A decade spent navigating the medical and educational system with an autistic child has immersed me in the world of autism advocates and researchers, and driven my own work on the interaction between neurodiversity and technology. That is why the shift to remote work has made me newly hopeful: It is not only a positive change in itself, but it has sparked a revolution in remote-collaboration technology that could transform the long-term opportunities for neurodiverse workers like my son.

The shift to remote work has changed the kinds of technologies we use in our working lives; it has changed how readily we embrace and adapt new gadgets and applications; and it has changed the nature and structure of work itself. All of these dimensions bode well for neurodiverse workers—and for the many organizations that stand to benefit from their talents.

A new wave of tech

Just think about all the tech that has blossomed in the past year, thanks to the mainstreaming of remote work. For instance, as messaging platforms like Slack and Teams replace hallway conversations or office drop-ins, they remove a major obstacle for people who struggle with distraction or social interaction.

“Being autistic, there’s no such thing as a welcome surprise,” says Hunter Hansen, a business analyst who is autistic. When he was working in an office, he says, “I had to keep myself from bristling: I couldn’t triage the interruption if someone sneaked up behind me. It really did affect my ability to lock in and focus.”

Share Your Thoughts

What additional opportunities do you think remote work has created for people who don’t adapt well to office environments? Join the conversation below.

In the 12 years in which he’s worked remotely, his home office has become his “sanctum sanctorum”: the fortress in which he can sequester himself from his wife and children and create the sensory environment he needs to work effectively.

Some autistic people experience a similar benefit from the shift to video meetings.

When people are physically sitting around a boardroom table, there are all kinds of nonverbal cues, like the way people shift in their seats, that constitute an important part of the meeting. That nonverbal communication can be hard for autistic people to parse, so it can end up shutting them out of the dynamic or leaving them confused about how decisions are reached.

When meetings move online, we all lose access to most of those nonverbal cues. What leads to “Zoom fatigue” for neurotypical people—who often find the loss of nonverbal communication disorienting and exhausting—can actually be liberating for neurodivergent workers.

“People can be in their own spaces, meeting virtually, but still be at the table,” says David Worling, a psychologist who specializes in autism and a director of Spectrum Works, a consulting firm that specializes in workplace inclusion. “You don’t necessarily have to spend all your time around people; you can still get work done and not have to have intense social contact.”

The rise of remote, often audio-only networking is another boon. Conferences and cocktail parties may work great for people with strong social skills, but they can be a nightmare for people who can be overwhelmed by all the sensory input in a crowded room, struggle with eye contact or are simply introverted. In an audio-only meetup, participants can curate their own physical environments. If you like to do your networking while seated in a quiet room, you can. And for autistic workers who use physical movement as a way of managing anxiety or overload, audio networking provides useful freedom of movement.

Indeed, this shift to a self-curated environment may be the single biggest benefit of remote work—not only for neuroatypical people, but for all of us. I recently interviewed Soren Hamby, a user-experience designer and accessibility advocate.

“If it’s a day where things are overwhelming,” the designer told me, “I can turn down the volume of a conference call—but I can’t do that in a live meeting.”

Learning to learn

The overnight increase in digital collaboration offers another benefit for neurodiverse workers: Not only are lots of new tools available for remote work, but they are becoming the norm.

When we all sat side-by-side in a physical office, it was still possible to opt out of virtual collaboration. In a distributed team, it is a lot harder to wriggle out of collaborating via Google Docs. The assumption that face-to-face interaction is the norm created a power imbalance that worked in favor of people who were more comfortable with in-person, real-time conversation, and disadvantaged people who were more comfortable online or who need time to think and process before responding.

“I don’t like to be asked questions on a whim, or have people pop into my office,” says Joy F. Johnson, a behavior analyst who works with autistic families, and is herself autistic. “Now, because I’m working remotely, most questions come via email, and I can take 24 hours to process and respond. I don’t have to worry about the way instructions are delivered to me vocally or verbally.”

Remote work means that neurodivergent people no longer have to justify or even disclose their communications preferences: Digital is now the default. People who are more comfortable online, and more adept at learning new technology, now enjoy the opportunity to shape the terms of team collaboration.

For many years, I worried that my son’s fondness for all things tech, and his frequent struggles with the give-and-take of in-person social interaction, would limit his professional opportunities. Covid has revealed the opposite: His comfort working, playing and existing online has spared him the stress that many other people have experienced during this period of relative social isolation. And his ability to not only learn but teach new technologies will make him a valuable colleague for people who struggle to adapt to new tools.

Changing the nature of work

The rise of remote, digitally enabled collaboration will mostly profoundly affect the prospects of many neurodiverse or disabled workers through its transformation of the nature of work. That is because it will move us away from the 9-to-5, centrally organized model of employment and toward new types of hybrid workplaces and flexible employment.

“Coming from a neurotypical point of view, we have the assumption that work needs to be a social place, and that is how things get done,” says Dr. Worling. “In the past year, we’re proving otherwise: There are a lot of people going crazy at home, who can’t wait to go back to the office. But if you’re really happy at home, stay there!”

As long as work was something that had to be done at a specific time and place, employment options were limited for anyone who couldn’t sustain a 40-hour workweek in a central office. But as soon as you move to a distributed team, or even a hybrid model in which only some portion of your workforce is in the office on any given day, you open up other possibilities.

Since remote work makes it harder to work together in real time, but easier to get stuff done separately (without the interruptions or distractions of the office), it can and should shift us away from teamwork as the default, and toward what my co-author and I call punctuated collaboration: working solo for long stretches, and then checking in with the group. For people who thrive when working solo but struggle with team dynamics, that shift makes it a lot easier to contribute and deliver value.

The rise of the distributed team also blurs the line between employee and contractor in ways that make work more accessible to people who may not succeed in the conventional employment model.

Now that everyone is meeting by phone or video, there is very little difference between an employee who’s calling in from across town and a contractor who’s calling in from across the country.

While that shift has worrying implications for job security and income inequality, it may be good news for people who can thrive as freelancers in ways they might not as full-time employees.

Good news for everyone?

No doubt my optimism about the impact of remote work stems from the fact that my son is a tech enthusiast, like me. But I wonder if I’m being a bit too sanguine.

Ms. Johnson, the behavioral analyst, offers an alternative scenario: that instead of creating more options, the rise of remote work could roll back hard-won accommodations for disabled and neurodivergent employees. “Pre-corona, people were at least attempting” to accommodate neurodivergent employees, she says. “But now we can solve that problem by banishing them to their homes.”

That scenario is worrying precisely because not every autistic child or adult is like my son, who has blossomed through remote learning. Rather, autistic people vary in their social drives, just like neurotypical people. “If you’re the kind of person who needs more stimulation, or struggles with routine and executive function,” then going into the office may be a much better option than remote work, Dr. Worling says. A world that treats remote work as the default option may be great for some autistic people, and harmful to others—if it reduces accommodations for those who would prefer to be at the office, excludes neurodivergent people from face-to-face contexts in which key decisions (still) get made or pre-empts the opportunity for younger workers to get acculturated into the workplace.

The best way to avoid that? Ms. Johnson suggests hiring autistic experts to identify and address considerations that can exclude neurodivergent employees.

A workplace that reduces sensory stressors and embraces the neurodiversity of its workforce is a friendlier place not just for autistic employees, but for all of us. As we look ahead to the moment when employers and employees will be able to make choices about whether and how to combine office work and remote work, I hope we can create workplaces in which neurodivergent and neurotypical people can make their own choices about where and how they work best.

Dr. Samuel is a technology researcher and the co-author of the forthcoming book “Remote, Inc.: How to Thrive at Work…Wherever You Are.” She can be reached at reports@wsj.com.


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Sunday, March 7, 2021

A Community Hero Serving Her Special Needs Community

 

A Community Hero Serving Her Special Needs Community

Over the past year, so many people have had their daily lives change due to COVID-19. In January, the Pittsburgh Penguins created a new PPG Community Heroes program to recognize those who have gone above and beyond in our community helping others as essential workers.

Also, the National Hockey League celebrates March as Gender Equality Month. The Penguins have designated their home game on March 7 as Her Hockey Day presented by 84 Lumber; and we are beyond proud to honor Julia Konitzky this Sunday as one of our PPG Community Heroes!

Julia is an advocate for the special hockey and autism community, as she serves on the Steel City Icebergs Board of Directors as Treasurer. She is also a proud hockey mom, former nurse with UPMC and a future Certified Autism Specialist.

The Steel City Icebergs is an adaptive ice hockey program for both children and adults with developmental disabilities such as Autism, Down Syndrome and traumatic brain injury. The program teaches participants how to play ice hockey in an environment adapted to each individual's ability. This unique program combines sensory input, social interaction, self-reliance and a willingness to adapt to new experiences with a sense of accomplishment and pride.

In November 2018, she helped organize and execute the first ever USA Hockey "Special Hockey Classic" tournament held at UPMC Lemieux Sports Center in Cranberry. Over 300 athletes attended from across the United States and Canada.   

A true hero within the special hockey community, Julia is committed to her work of improving the lives of those with both physical and mental limitations. In addition to the USA Hockey "Special Hockey Classic," she has donated her time and efforts to many Penguins and Penguins Foundation initiatives including the Happy Hockey Days event. She also assisted in creating the Penguins sensory kits that were distributed to five special hockey teams throughout Western PA on the International Day for People with Disability.

Inclusion in sports for special needs individuals and creating a positive experience through hockey has been paramount in Julia's personal mission. And her efforts have not only helped the athletes; but have also focused on the special needs families and caregivers.

"While competition is beneficial to the athlete physically, emotionally, and socially; the benefit to caregivers and family is tremendous," stated Julia. "The opportunity to bond with other families for a weekend, sharing common struggles and concerns, is most beneficial for parents and caregivers. Events like tournaments provide a much-needed venue for informal peer support and sharing of experiences among families of children with disabilities." 

Julia has also hosted events to help bring opportunities of peer building and creating a neuro-diverse environment both on and off the ice including the Steel City Iceberg's Annual Spooky Skate and Try Special Hockey for Free events. She has also invited club and school hockey teams to participate in skills practices, creating a wonderful opportunity for both the special athletes and their mentors.

As the pandemic has disrupted so many planned events over the past year, Julia sites a huge missed opportunity as the USA Hockey Disabled Festival was cancelled. The Festival was set to be the largest event in the USA Hockey organization, with over 2000 disabled athletes from more than 130 teams throughout North America coming to Pittsburgh.

But times are changing and we can all look forward to when current restrictions are lifted and we can get back to the work at hand - using the great game of hockey to include everyone who has the dream of playing.

And so, the Penguins Foundation salutes Julia Konitzky for her tireless work on behalf of all the special athletes, their families and caregivers… and for her unwavering determination to create inclusion in the exciting sport of hockey.


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