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In Celebration of Autistic Pride Day: Meet our Advisory Board

June may seem like any other month, outside of the Summer Solstice (which celebrates the coming of Summer), the first month without school, and Juneteenth (the celebration of the end of slavery). However, for those of us who are autistic, there is a special day that is celebrated on the 18th of June each year and that is Autistic Pride Day. Celebrated in 2005, by Aspies for Freedom (‘Aspie’ is a term of usage for someone with Asperger’s Syndrome, a form of autism), on the birthday of their youngest member, and modeled after the Gay Pride Movement, Autistic Pride Day is meant to be a celebration of the accomplishments and humanity of those with autism – as a response to those who saw autism as a disease or as a handicap to success. Coincidentally, Autistic Pride Day is one day before my birthday. So, it is neat to know that I almost share a birthday with this person of honor.

As many who have listened to the Els for Autism Fore! Autism podcast know, I do not doubt that there is validity in thinking that cases of severe – or profound – autism are very different than how many self-advocates see autism. I also have learned, that something so integral to my character is something I should feel proud about and not need to focus on some sort of solution to change who I am. It is not always easy to do, but it is something I remind myself of constantly, and something I encourage others to strive for. Needless to say, I celebrate each and every person who struggles with finding their pride for having autism spectrum disorder. I celebrate every accomplishment each person has made achieved, no matter how small. At Els for Autism, we celebrate this collectively and emphasize the importance of giving individuals with autism a voice through our Advisory Board.

I would like to profile the strides that each member of our Advisory Board have made in the autism community. We are so grateful for their participation in this group who we hold with very high regard.

Sue Abramowski has worked in a full field of human services for two decades now specializing in helping those with developmental disabilities and mental health diagnoses from her lived-in experiences. The term ‘peer counselor’ or ‘peer mentor’ isn’t often used, but her connection to the communities she serves and her experiences in her environments shows how important it is for someone with a relevant background to be engaged with populations of people who need serious help in their lives. She is also great at communicating when one needs a friend.

Andrew Blitman is an example of how one’s different neurology can inform and enhance the global portfolio of creative arts. He has credited his prolific output of artwork, poetry and other writings for prior blog articles and his books as helping him understand the world around him better as a self-advocate with autism. I would recommend his books that use poetry and illustrations to characterize the animals of our world from Andrew’s point of view.

Mike DiMauro shows how an unconventional life lived through the prism of autism can be very helpful. Through his Mike’s Mission Group, he has used his ability of transportation to help him carry out a goal to deliver UberEats orders in all 50 states and through this uncommon goal has used his freedom to blog about his travels while also serving the country, one meal at a time. He is also very passionate about his position as a self-advocate with autism as he is very vocal and very outspoken about the status it has with him.

Merrick Egber leads the Advisory Board as Administrative Assistant at Els for Autism. With pride for the autism community, he is a champion of the self-advocacy community and stands alongside them to amplify their voices. Merrick is interested in learning new things and always uses his time to help and support the community wherever he can.

Jim Hogan is an example of how the tech industry can accommodate workers with autism – especially by having him in a leadership role! He has served as a role model for so many who have followed him into a job at Google and as an anti-bullying advocate has made sure that working conditions there are comfortable and safe. He has even talked about Accessibility with the ‘father of the Internet’ Vint Cerf and how important it is to accommodate those with autism in the workplace.

Adam Jones is an example of taking that interest – in his case horses and running with it to create a productive, life-changing and transformative career path. Adam Jones works for Madison Fields – a division of the Madison House Autism Foundation – a Work Experience and Equestrian Resource for individuals with autism – in a full capacity as a graduate of the prestigious Meredith Manor International Equestrian College. He serves as an example of someone whose drive, determination, and hyperfocus serve as a great complement to his great character.

Dr. Kerry Magro is a beacon in showcasing the hopes and dreams of the autism community through his constant speaking engagements, his books and his consulting tasks with his latest one being for the U.S. version of Love on the Spectrum. He also has the KFM – Making a Difference Foundation where he has interviewed numerous individuals with autism to fit them with scholarships for college. But, sometimes the most important thing that a self-advocate can do, which is true of everyone on the list, is to not just be hard at work on autism education and awareness but also to be happy at work!

Paul Morris has been important in spreading awareness through the college campus scene, and especially into fundraising related to physical activities – like March Madness, or Marathon Running. Besides awareness he has also partnered up with organizations, like the Autism Science Foundation, to champion the cause of autism research. Lastly, what is important is that he also has worked in the Human Resources field at New York Medical College and the Office of Human Resources is a major cog in all of our goals related to finding people with autism jobs.

Isabelle ‘Izzie’ Piwnicki is a role model for other women with autism. With her mother, she has served in a leadership role for the Girl AGain initiative as part of the ‘Yes She Can’ Work Experience Program in upstate New York. Girl AGain teaches women with autism valuable work-related skills through American Girl Dolls and related accessories. Ms. Piwnicki also serves as a dancer par excellence. By using her life experiences, she has been able to serve as a model employee for Sephora – a famous set of personal care and beauty product stores.

Ron Sandison serves as a major inspiration in his community. His strong belief system in his faith which has allowed him the ability to teach countless congregations about autism has also allowed him to serve as a strong supporter of the mental health community where he is. He also serves as a strong proponent of journalistic outreach to many notable personalities on the autism spectrum.

Katie Santoro shows that organizational leadership matters. From her college days as a sorority figure to her days, now as Junior Board Chair of the Unicorn Children’s Foundation, invited guest to the FAU-CARD Mental Health Task Force, and also as Member-at-Large as part of the Els for Autism Advisory Board she loves championing people from the inside. She is especially supportive of championing women with autism and has been very important in the overall journey to make sure that women with autism are diagnosed properly and treated adequately.

It is important that a special education curriculum has at least one professor in the field be someone who has been through the system, themselves, and Dr. Stephen Shore is an example of it sending off future special education professionals with reputable knowledge from prestigious Adelphi University. Dr. Shore is also a writer and has had books published on navigating the college scene with autism and a guide on understanding the condition. Beyond that as a speaker and presenter, he, like everyone else on here, gives a voice to those who may find it harder to speak.

Connor B. Sturgis is our newest Board Member and serves as a pillar of our local community. In his capacity as a greeter at his church and as a full-time customer service employee at Publix (A regional grocery store chain) he shows how supportive people with autism are to the society around them. His zeal is in having his ear to the grindstone to find ways to support his local autism community through fundraising efforts, championing initiatives by Publix or even by being a good classmate to his fellow TLA students before he graduated from there.

James A. Williams is our international member. Born in England, at a very early age he noticed that he had many differences in his socio-communicative understanding of the world around him but he also considers his neurological difference to affect his processing of sound and sight. In 2010, he watched a Youtube video on playing piano and decided to become a self-taught virtuoso. Now he has memorized so many pieces by heart and has traveled constantly performing his music to further the cause of awareness and charity. What is striking is that when he was much younger he wasn’t as interested in learning the piano – but sometimes your passion can take hold of you at a much later age than you may have expected.

Why Does Creativity Matter? | May is Mental Health Awareness Month

Aren’t we all creative at something? Far be it from a group to be calling themselves ‘creatives’ because they feel that it is more important to them. Rather creativity simply is someone, or something, wanting to be heard. Beneath the layers of the diverse landscape of various humans, there will always be a rocking noise, using of spoons for rhythm, or quoting your favorite Television Show.

I think that creative outlets matter a lot. They keep us focused, when we are bored, allow us to understand the world better, develop skills we never knew, and hobbies we never thought of, and may even help us in career and educational planning. I’ve learned of the revelatory nature that creativity has played in our Reach & Teach Through the Arts Programs through Dance, Music Therapy, Musical Theater, and our Interability Chorus on individuals who are able to express themselves in unique and individualistic ways. But I also look at creative outlets as a means of survival, a means of adaptation and a means of expression if we need the tools to do so. I would recommend for individuals with autism and co-morbidities that lean into mental health challenges consider their inner creative being – no matter what it is about. Take me, for example:

When I was growing up, I may have seemed to have it all together in a way strangely copacetic but the things that bothered me were things I couldn’t explain or describe through oral communication. ‘Why did I feel lost? Who were my long-term friends? Why couldn’t I move on like my peers? Why do I feel so honest in explaining things I didn’t like or bugged me?’. I also had to get a hobby because I didn’t have one and needed one for greater mobility. At the time I was into music and my brain was really into writing, so naturally, when I needed to deal with the worst throes of my mental dystopia, I finally found salvation.

I think that what may be an unanswered mental health crisis is the lack of a creative outlet. How many people out there feel socially isolated or depressed but haven’t found a way to use an outlet to their advantage, perhaps to find a better way through such a challenging world that we live in? How many feel embarrassed by it due to the stigma or societal pressures of conforming to expectations. I would like to ask our reading audience, especially those with autism, how a few more seconds of self-stimulatory behavior, which can be a creative force, in my opinion, can help one’s life? When I was younger, I would sing to myself, in high school, whether it was appropriate or not – I would even sing while a teacher taught – which was probably the closest thing to auditory self-stimulatory behavior for me because it allowed me the ability to still myself, to concentrate and focus and to self-manage and regulate my behavior while still getting great grades. I do remember it annoying some people, though and I’ve stopped doing it.

Having a creative core is helpful but it is one part of a puzzle. My domain, www.MerrickEgber.com, hasn’t given me a living but it has served as a beacon. My practice of thinking creatively has allowed me to do well with the Foundation in my many roles. It is really up to others to use this inspiration or spirit to see how they can use it professionally or even create new paths.

Since this has been such a personal article, I would like to welcome feedback through Merrick.Egber@elsforautism.org

THINK CREATIVELY!

The “Sea of Possibilities” Microbusiness Has Expanded

In 2020 after the COVID-19 shutdown, the Adult Day Training (ADT) program launched a microbusiness “Sea of Possibilities”. This program was designed to empower participants to learn; product design and development, staying on task, communication skills, community inclusion, money skills, motor skills, and vocational skills.  While in the program, participants create a variety of ocean-themed art projects using materials from the beach such as shells, driftwood, coral, sand, and sea glass.

Participants, under the direction of the ADT program Coordinator, Julie Lobdell, have been busy, not only creating the art projects but getting out into the community to sell them, too. They have been displaying and selling the art projects at a number of locations around Palm Beach County including Jupiter’s Love Street, PGA National Resort and Spa, Greenacres Extravaganza Art Fair, Jupiter Police Autism Awareness Day at Carlin Park, The Gardens GreenMarket, and The Tennis and Pickleball Center in Palm Beach Gardens.  They have also expanded beyond a local offering by creating a Facebook page, and by launching an e-commerce webpage on elsforautism.org. No matter where you are in the U.S., you can purchase the creative “Sea of Possibilities” art projects and have them shipped to you.

Please shop by visiting www.elsforautism.org/sea-of-possibilties. Follow them on Facebook for the latest updates, too! https://www.facebook.com/SeaofPossibilitiesElsForAutism

Honda Classic, You Made Shaun’s Day

Nothing is better than being asked to volunteer at The Honda Classic when you love golf! In August of 2021, the PGA TOUR visited The Els Center of Excellence campus for a feature story on Ernie Els who had received the Payne Stewart Award in 2015.  The Els for Autism team introduced several families to the TOUR staff, one of whom was Shaun Deason, a devoted and enthusiastic participant of the Foundation’s Adult Services programs. Shaun is a big golf fan and had called upon his experience at a previous Honda Classic where he learned golf skills under the guidance of Ernie Els at the Ernie Els #GameON Autism® Golf Clinic offered to individuals with autism spectrum disorder and other developmental disabilities. Shaun spoke highly of his experience and advocated for himself about his desire to go back to The Honda Classic. Shaun is a man of big dreams, and he explained to the TOUR producers his desire to hang out with some of the golf professionals at The Honda Classic “someday”.

In February, that is exactly what happened. Shaun was one of 1,300 volunteers at The Honda Classic and had several jobs including replenishing water bottles on the field.  To make the day even more special, Shaun had the opportunity alongside Volunteer Chairman, Jim Coleman, to interview The Honda Classic player, Joshua Creel, from Cheyenne, WY.  Shaun got to learn some personal things about Joshua including his favorite dessert.  When asked what his favorite part of volunteering was, Shaun replied, “All of it.” He cannot wait to volunteer next year.

To see Shaun in action as a Honda Classic volunteer, visit https://twitter.com/pgatour/status/1498383781350232073

We are Grateful: Our Employer Partners

Employment is necessary for individuals with autism to have a sense of independence, become part of their community, and share their strengths and talents. In addition to earning an income and gaining independence, Els for Autism Foundation supports businesses in the recruitment and onsite training of qualified and talented individuals with autism and other developmental disabilities. “At Ibis, we have always been an inclusive and diverse organization, and having individuals on the spectrum has been absolutely positive for not only the individual, but also the staff, and the entire club,” said Stephen LoGiudice, Chief Operating Officer, The Club at Ibis. “Seeing these young adults come to work with a smile on their face and seeing their sense of accomplishment once they get the task down, in some cases, they become our best employee. It has been really rewarding for everyone.”

Individuals with autism and other developmental disabilities tend to excel in the areas of attendance, punctuality, job tenure, and adherence to policies and procedures. “For about the last six or seven years we have been involved with The Els Center of Excellence,” said Ryan Munder, Chairman/Owner, Next Level Distribution. “We have employed people with autism, and it has been an amazing journey. It is the greatest win-win situation where there is a tight labor pool. The Center has made it easy to hire people and we are providing employment opportunities to people who have had a hard time finding a job. They happen to be some of our best employees.”

If your business would like to partner with Els for Autism, it would be supported in the hiring of employees with autism and other developmental disabilities whose talents align with your business goals.

To learn more about becoming an employer partner, visit https://www.elsforautism.org/get-involved/employer-partners/

A Momentous Occasion: Celebrating the Groundbreaking of The Adult Services building

On April 4th, 2022, Els for Autism Foundation® had a lot to celebrate and be thankful for. The momentous occasion was the long-awaited groundbreaking for The Stoops Family Foundation Adult Services building at The Els Center of Excellence® campus.  The groundbreaking was attended by the Foundation’s founders, Ernie and Liezl Els, and Marvin R. Shanken, major donors, the press, government officials, employer partners, and many of the Foundation’s Adult Services clients.  “When we heard what this new adult services building would offer, we knew we wanted to be a part of it,” said Jeffery Stoops, a major donor to Els for Autism®. “Usually after a person with autism ages out at twenty-one, services become very short in supply and so does funding to support them. We believe the services adults with autism will be offered in this building will have a miraculous impact on them and give new hope and encouragement to their families.”

The Stoops Family Foundation Adult Services building is targeted for completion in 2023. It will be a 21,000 square-foot facility to serve adults with autism spectrum disorder (ASD). “We are so proud that finally there will be a dedicated building where we can house the variety of services available. It will have the Adult Day Training, Work Experience program, vocational and life skills, and mental health support,” said Liezl Els.

“We are really doing what we can to make autistic kids’ lives very comfortable,” said Ernie Els. “Because we as a society go through our day-to-day stuff but we need to get into the lives of autistic kids, we need to understand what they need. We need this building to happen and with the help of the donors, people who have funded us, we can continue to make the lives of autistic kids as comfortable as they can be.”

The construction of the building comes at an important time because the need for Adult Services, offered by the Foundation, is very high. “With 1 in 44 children being diagnosed with autism every year, we must pause and say to ourselves, these children are going to grow up and they are going to become adults,” said Dr. Marlene Sotelo, Executive Director, Els for Autism. “They deserve a place to be able to continue to grow, to thrive, to connect, learn, be employed, and be able to live as independently as possible. And that is what this building is going to bring forth.”

To learn more about The Stoops Family Foundation Adult Services building or to share the information with others you feel would be interested, visit www.elsforautism.org/adults

Empowering Autistic Women: How one person can change the lives of an underserved community

As Chair of the Advisory Board, it is my purpose to field, nominate and choose who would be the right people for the Board. Our Board serves as a diverse body of individuals from all walks of life, representing a wide range of populations but the one commonality is that all are found somewhere on the autism spectrum. One of our newest members is Isabelle ‘Izzy’ Piwnicki from White Plains, New York who co-founded Girl AGain with her mother, Marjorie Madfis, which is a Microbusiness, of Yes She Can a Work Experience Agency, for women with autism who work on American Girl Dolls and Accessories. Since 2014, this program has been widely successful allowing Izzie the ability to not just advocate for herself, which she has been doing for years, but also for others.

When I read about her background and being in the trenches with all of the therapeutic programs that we treasure in the Clinical Field, I knew that she had to be one of the Advisory Board. It also helped that she became our Autism Spectrum Award Winner in 2021, which she was very excited about when we acknowledged her ability to transform and change the lives of others. Currently, at the age of 25, she is successfully working at Sephora and serving as a role model for anyone else who enters the workforce as a member of the autism community.

Because of her example, I decided to conduct a Zoom Interview with her and her mother to ask a series of pertinent questions related to Izzy’s life and her mother’s boundless love to see her child succeed. Below is a narrative built upon the strength of the answers to my questions.

Isabelle ‘Izzy’ Piwnicki was diagnosed with autism as a toddler during a time in which she lost a lot of her speech and some of her skills, but even before that moment, her mother – Marjorie Madfis – saw traits that could be considered to fit within autism including the ability to have great directional abilities in her stroller when going to different playgrounds. The diagnosis did not surprise Mrs. Madfis who proceeded to search for therapies, treatments, and services so that Izzy can regain lost language, have friends and create a sense of independence. Through Occupational Therapy, ABA Therapy, special educational programs, and speech therapy, Izzy was able to create more meaningful conversations, generate friendships, and manage her emotions better.

When Izzy was about 6 she had her first mainstream moment when she was introduced to a dance program, the only disabled individual there and the instructor was willing to accommodate her. Izzy ended up following the other girls and it had such an impact on her that her mother decided for her to have an inclusive education which meant taking classes with a variety of kids, disabled and not. Dancing also helped in that Izzy has been through a multitude of workshops and classes and is even on the Dancing Stars of Westchester Page, where on June 18th of this year she will perform in front of a large audience.

Going to high school Izzy succeeded in having a Teaching Assistant, or T.A. for her classes who would help her with her notes and would advocate with her to communicate with her teachers. At Westchester Community College, she had peer mentors who along with helping her take notes, and asking questions to her professors would also help her navigate from class to class. These accommodations helped her graduate from high school and from community college.

At Yes She Can, and the Girl AGain Boutique Microbusiness, Izzy has become a model employee for all of the other trainees teaching them, by example, how to be more flexible, how to accommodate other perspectives, how to work together as a team, and how to handle crowds and loud noises. She is also a model employee at Sephora, where she also works, due to her enthusiastic and positive personality. Despite her challenges, challenges that could feel overwhelming, she perseveres and sees things through, and is also very adaptive at trying new things, which her mother is very proud of.

Her words to other women with autism? ‘Always stand up for yourself, no matter if you’re disabled or not’.

Visit this page to learn more about Izzy Piwnicki and the other members of the Els for Autism Advisory Board.

Joe Baker

Joe Baker was diagnosed with Autism at 4 years old.  After intensive speech therapy and OT as well as supportive special education teachers he made tremendous progress. He encountered a setback at age 10 with the development of Epilepsy.  In 2019, Epilepsy cut his high school experience short, but he managed to graduate!

Throughout all of this, Joe developed a passion for drawing.  Art helps him make sense of his emotions and of the world. When COVID-19 happened in 2020,  our family decided to renovate a bedroom into an Art Studio.  Joe began to sell his Art online and our small business “Artfully Joe” was born.

Now at age 20, Joe has taken his passion and created a purpose.

To learn more about Joe’s artwork, view the gallery below or visit his website here. You may also follow him on Instagram @artfullyjoe.

Why We Could Use a Building for Adults with Autism

Every year, the prevalence statistics of individuals with autism spectrum disorder (ASD) get higher and higher. Earlier in the month, the CDC put out a new statistic indicating that 1 in 44 8 year-olds will have an ASD diagnosis. This new finding, probably due to greater advancements in technology and diagnostics, greater awareness of ASD, the broadening of symptoms, and a greater appreciation of what it could mean is an indication that supporting those with the diagnosis is one of the most needed human stories of this time.

Since ASD is a developmental disability, it brings to mind how much of the general public has had an understanding that these developmental delays will ‘work themselves out by adulthood. Remember that the first emergent work in the field, by Dr. Leo Kanner was termed ‘infantile autism’ for the longest period of time. It is also not too helpful for the adult population that the general focus on people with disabilities is when they are children and adolescents, probably easier to solicit support with a toothy smile from a young kid than a not-so-cute adult. Once the kid becomes an adult, it is expected for them to do so much on their own – no matter the level of support.

When I was growing up, I will admit that I needed greater support and greater understanding. I needed to see a speech therapist because my speech was basically ‘Sylvester the Cat’ and I had to solve my ‘TH’ impediment. My arms were so droopy when I moved that I became the butt of mockery. I would run after my peers to hug them as I had much fewer social boundaries at that time. I would stim by flapping my arms, would sing to myself during class times, and at a time had to use an AlphaSmart word processor because if I wrote more legible for a period of time, I would get hand cramps. I also ended up in an Independent Living Program after I graduated from high school.

Now, my symptoms are not as prevalent, but it is not like they’ve completely disappeared. I still have social-communication difficulties, speak with a monotone voice (which I use for a deadpan effect when telling jokes), and walk differently, more like dragging my feet. Yet, I also work for the Els for Autism Foundation doing a variety of tasks making me a role model in the eyes of many. While I may serve as a template for how so many people wish to see ASD, my example is a misguided one.

When people look at adults with autism they see Temple Grandin, Dr. Kerry Magro, Dr. Stephen Shore, and the rest of my Advisory Board Members. They don’t see individuals who really want to live fulfilling and essential lives but don’t have the supports or resources to do it. Individuals who really need a beacon that a bunch of semi-related offices cannot entirely give them.

In 2023, we really want to give the growing population of adults with autism, a place that they can consider their sanctuary. Where they can learn to advocate for themselves, where they can learn essential skills, greater ways towards independence and to feel empowered and a sense of pride in their daily lives. What better way to do that than to have the spirit of goodwill and charity towards engaging in our Capital Campaign to build an Adult Services Building on our campus!?

For more information turn to: https://www.elsforautism.org/ways-to-give/adult-services-capital-campaign/

I wish you all the best and happy holidays. I am pleased to write to you all and broadcast for the great new year that will be 2022!

Celebrating National Disability Employment Awareness Month – Perspective from Els for Autism Employee Merrick Egber

I would like to take this time to appreciate October’s National Disability Employment Awareness Month by recounting the importance of working for the Els for Autism Foundation, starting with the initial impact of my hire.

I started working through an exchange I had with our Executive Director, Dr. Marlene Sotelo when I wasn’t sure about what else I could do since I had graduated from college but was still working a retail job with very little hope in my future. While I had received the degree I wanted to have because my communication wires were crossed, I didn’t graduate feeling fulfilled that I could do what I really wanted to do: Host a Radio Show. I had also thought of a job in data entry, but that would’ve been impossible due to my lack of skills and experience.

What Dr. Sotelo and the Foundation saw in me was something that I saw in myself, a quick learner with the potential to maximize practical learning experiences into something that I could transform into one of my new strengths, someone who appreciated handling a variety of work-related tasks, and someone who could use some of my academic backgrounds, and talents left uncultivated elsewhere, into something transformative for myself and others. I couldn’t articulate any of this to anyone at a job interview, nor could I explain to individuals how, in my group of neurodiverse individuals, I was more of a rare breed. What felt like a series of character flaws building up inside of me, ended up feeling like a loss to any company that rejected me beforehand.

I have used my role to understand my condition better, and to understand other people who have the same, or similar, diagnoses in a much better way, to become more of a champion of those who can remind me of myself. It is a common feeling, in me, that when we succeed, we don’t just succeed for others, I feel that I succeed too. While I may be an Administrative Assistant, it doesn’t stop there for me, and while I may have been diagnosed with Asperger’s Syndrome, it doesn’t stop there for me too. My position has more layers than this title can possibly realize.

When I was first given the news of my diagnosis, which would explain a healthy amount of my earlier years, I was disheartened thinking of what I couldn’t do, rather than what I could do. I had worked, for a while, to be seen as the same as my peers but to also understand that I’ve had extremely intelligent, motivated peers who have the same condition as I do, even those I went to school with, may create a distinct perspective on my own world. There are futures for everyone with a disability, for everyone with autism, in the workplace, in the career field, and I’ve come up with a new inspirational quote to end this article with – if at least one person believes in you, you can do anything, and sometimes that one person, the only person you may need, is yourself.