By Merrick Egber

One of the most critical roles in proving that a new program or service works is individuals conducting research, hence the term ‘evidence-based practice.’

Dr. Nate Shanok has been doing integral research with us for many years, including the Ernie Els #GameON Autism® Sports programs. His newest paper, which he worked on with Dr. Erin Lozott, Dr. Christine Honsberger, Dr. Magda Mostafa, Dr. Toby Honsberger, and Dr. Marlene Sotelo, called “The Impact of ASPECTSS®-Based Design Intervention in Autism School Design” about the design of The Els Center of Excellence®, was published in the prestigious Q1 International Journal of Architectural Research. 

I spoke with Dr. Shanok about his start with us, his interest in autism spectrum disorder (ASD), and his research interest. We also discussed what he has outside of work with us that still allows him to be a game-changer. Lastly, I asked him about the Fore Autism Podcast he cohosts with me. 

How did you get involved with the Els for Autism Foundation®? 

“As a Florida Atlantic University (FAU) graduate student in 2018, I conducted a thesis project examining facial emotion recognition and brain activity responses in preschool-aged children with ASD. As the project finished, I connected with Dr. Maryellen Quinn-Lunney and Dr. Jack Scott of the FAU Center for Autism and Related Disabilities (FAU CARD). They referred me to the executive director at Els for Autism, Dr. Marlene Sotelo, to become involved with her team as a researcher.” 

What interested you in researching for us? What research are you working on?  

“My interest in autism research dates back to my childhood in Chicago. In middle school, I had a friend with autism who amazed me with his ability to hyperfocus on anything about sports. He was the equivalent of a walking ESPN anchor and could impressively name the entire roster of all 30 NBA teams. This individual also had an interesting way of seeing the world, which helped to fuel my interest in understanding human behavior with the factors that make each of us unique. As I continued to get more involved with the field of psychology, autism became one of my primary interests because it is increasingly common, has a very diverse behavioral phenotype, and ties in well with the field of neuropsychology. 

I initially worked on a collaboration project between Els for Autism and the Seaver Autism Center, which examined EEG (electroencephalogram) and eye-tracking biomarkers in toddlers with ASD with the impact of an early parent-child interaction intervention on these traits. Since then, I have been primarily involved with studying the stellar program offerings at Els for Autism, including the Ernie Els #GameON Autism Golf program, Ernie Els #GameON Autism Tennis program, and the RUBI (Research Units in Behavioral Intervention) parent-training program. I also worked on a manual to help other autism learning centers adapt our recreational tennis program for their clients.” 

How has working with Els for Autism supported you as a researcher?  

“I am extremely grateful to Els for Autism for the opportunities and support they have provided me since I was a graduate student at FAU. They have allowed me to work on important autism research projects that developed into publications in journals, such as Research in Autism Spectrum Disorders and Journal of Autism and Developmental Disorders. Additionally, I have been very fortunate to work under the supervision of Dr. Marlene Sotelo and Dr. Erin Brooker Lozott. They have supported my advancement as a professional from day one and taught me many valuable lessons relating to leadership, communication, and diligence. I have also been a tennis coach and a podcast co-host with my good friend Merrick Egber.” 

You were our previous tennis coach; why did you feel tennis would be good sports-related therapy to help individuals with autism? 

“Coaching tennis at Els for Autism was easily one of the best experiences of my life. I’ve played tennis since I was five years old and competed at a high level until I finished college. Playing tennis puts me in a complete flow state, and I lose track of time when playing. It has always been therapeutic for me. When I finished my career, I lost a lot of my passion for the game, and I felt like something was missing in my life. Watching the clients involved with the tennis program jump for joy after hitting a shot into the target or winning a point against the coach was highly rewarding for me. Learning the game of tennis was such an enjoyable experience for these kids that it helped reignite my passion for the game, and I have been playing a lot more lately. Tennis is particularly advantageous as a recreational activity for individuals with autism because it offers the opportunity to learn fine motor skills while getting beneficial cardiovascular training. Additionally, tennis can alleviate a lot of stress. Because it is only a two-player sport, it allows the students a great opportunity to go out and hit with a parent or friend outside of the structured classes.” 

How have our programs impacted the autism community? 

“The Ernie Els #GameON Autism Golf program and Ernie Els #GameON Autism Tennis program have highlighted the importance of sport and fitness training for individuals with autism. We have found that these programs improve various health and fitness measures and fine motor functioning. Additionally, there are numerous psychological benefits for participants, including improved social skills, boosted receptive and expressive communication, and increased regulatory abilities. These programs are infused with autism-learning objectives, which offer a unique opportunity for students to train some of their social skills while participating in a relaxed, recreational setting. Most importantly, the program is fun, and students feel accomplished when they can improve their game.” 

 Can you tell us about the Fore Autism Podcast? Why was it valuable to co-host a podcast that is an official podcast for the Foundation?  

 “The Fore Autism podcast started as two friends (Merrick Egber and I) enjoyed speaking about pop culture, autism news and research, and Els for Autism events (almost as much as we enjoyed eating lunch). We believed that our regular lunchtime conversations could make a compelling podcast show where we could interview some of our coworkers and discuss the exciting developments at the Els for Autism Foundation while also having a “World of Autism” discussion segment. I am very proud to still be a co-host of the podcast along with Merrick. We have been able to cover many inspiring stories. We have also helped spread awareness of autism and the many resources in South Florida and nationally that individuals with this condition and their families can access. The podcast has gone through many iterations over the years, but I’m thrilled that Merrick and I still get to record these shows monthly. Please check it out when you have a chance!” 

What do you hope to do with us in the future?  

“I hope to continue collaborating with the foundation for many years to come. I want to continue to study our tennis and golf programs and their impact on participants and their families. I wish to continue to spread the word about Els for Autism to the broader autism community through research manuscripts, presentations, and podcasts.” 

When you are not working with Els for Autism, what are you working on?  

“I have been the director of the Delray Center for Brain Science for the past two years, an outpatient neuropsychology center specializing in depression, anxiety, OCD, PTSD, Alzheimer’s disease, and traumatic brain injury. We perform brain activity mappings and brain-based therapeutics such as transcranial magnetic stimulation and neurofeedback. I also recently published a book titled “Pursuing Purpose: A Neuropsychological Approach to Maximize Life and Enjoy the Process,” which offers a modernized approach to finding purpose in life and recovering from depression or existential crisis.” 

I want to thank Dr. Nate Shanok, who has brought significant wisdom and experience in the complex science of ASD. 

To view all of our published research click Here

By Merrick Egber 

 The Stoops Family Adult Services Building officially opened in late August on The Els Center of Excellence campus in Jupiter, Florida. The 21,000-square-foot building is a place for adults with autism spectrum disorder (ASD) to access the essential support and services needed during the transition to adulthood years and throughout life as an adult. 

 The building offers a range of specialized vocational labs and rooms, including the Stanley Black & Decker vocational training lab, the Sea of Possibilities Microbusiness, a sensory lounge, a hospitality & life skills suite, a grocery vocational lab, dedicated therapy rooms, and the Big Easy™ Cafe by Ernie Els. 

With a lot of excitement around the cafe opening, I sat down with the general manager, Jenn Wilson, to learn about her background and hopes for the cafe. 

Can you explain to us your background before working here? 

 “I grew up on a farm in New York, and food and family were always super important to me. I learned how to cook at an early age with my mother, and while I have a Bachelor of Arts in Classical Studies from Skidmore College, my passion is in the kitchen. Once I finished college, I attended the Culinary Institute of America in Hyde Park, New York. I worked in various hotels and restaurants before joining my husband to work alongside him at the Lazy Loggerhead Café in Jupiter.” 

How did you start your association with the Els for Autism Foundation®? 

 “I became associated with Els for Autism® because Karen Roberts, the Human Resources Generalist, lives next door to one of my sisters. She had known of our restaurant, and I was hired shortly after as the café manager.” 

 Can you explain the concept of the cafe inside the Stoops Family Adult Services Building? 

 “The concept of a cafe is to provide a fresh & healthy menu with a warm, comfortable cafe environment for staff, parents, students, clients, and guests of Els for Autism. We will focus on the autistic diet by serving gluten-free, dairy-free, and low-sugar-style foods with other delicious selections. After we have our systems in place, we will work with autistic adults in several capacities to help them develop skills to support finding employment in culinary and hospitality. I aim to empower them to make thoughtful and valuable contributions within our café, at home, and in the community.” 

What would be your favorite dish to serve in the cafe? 

 “We begin menu testing and plating this week, where we will be taking pictures of all the items for the menu on the Toast Point of Sale System. My favorite things to make are usually very colorful and flavorful. While they will always have the same ingredients, I can be creative and have fun. But if I had to pick one dish as my favorite, it would be the tropical fruit salad.” 

What are your hopes and dreams for the cafe? 

 “My hopes and dreams are simple: to create delicious, flavorful food at reasonable prices with kind, thoughtful service. It is the magic formula for keeping customers and turning them into loyal patrons.” 

What would be your advice for running a restaurant, especially employing people with autism? 

 “Years ago, my husband, Brian, and I started watching Hard Knocks on HBO. Every season, it follows an NFL team during preseason (this season was the NY Jets), where it gives you a window into what it is like to be a player, an owner, and a coach inside a specific pro football organization. In any restaurant, consistency is one of the hardest things to achieve and maintain. You must wake up daily to do the work and inspire your team to do it with you, learning to exercise balance, timing, and maturity while wearing many hats. In last week’s episode of Hard Knocks, one of the coaches quotes Vince Lombardi’s famous words: ‘Perfection is not attainable, but if we chase perfection, we can catch excellence.’”  

The Big Easy™ Café by Ernie Els will be open for all who will come on-campus on Monday, September 11, and will serve a variety of breakfast, lunch, and smoothie items plus a kid’s menu from 7:30 a.m. to 2:30 p.m.  

Many thanks to Jenn Wilson for participating in this interview, and I hope she will serve, along with her husband, Brian, many tasty treats for years to come! 

We are aware of certain professions having autism-sensitive professionals in the fields that they work in dentists, pediatricians, psychologists, and psychiatrists, to name a few. However, you don’t always think of a barber, so we spotlight one who provides free haircuts every third Sunday for children with autism.

Meet Joe Alfano, owner and proprietor of Barber’s Edge in Jupiter, Florida. Through the power of social media, in a few short-minute videos, he spoke about the need to accommodate kids with special needs, particularly autism, by having his barbershop open for them every third Sunday so there would be no noise, loud music, or distractions. Nothing that could irritate somebody who is very sensory-sensitive, and best of all, it is free!

Why did you want to become a barber?

 “Well, my mom was doing hair in the 70s and 80s. So when I was 15, in 1985, I started cutting hair in my garage for friends and family, giving them the worst haircuts you can imagine. As time passed, I got better and just kept cutting hair.”

How has autism spectrum disorder impacted you? 

“I moved to Jupiter in 2009 and started working at a barbershop. A couple of kids with autism would come to the shop, one of them being Ben, Ernie Els’ son, and another little child who suffered pretty badly. Myself and my colleague, Juan, felt that it was unfortunate, so we took an interest in taking our time with them, and seeing the reaction on the families’ faces made us happy because they could not get it done anywhere else, so that started it all.”

Can you tell us what you do every third Sunday of the week? Why is it valuable to open a barbershop just to cut the hair of children with autism? 

“I said every third Sunday, but we have been busy during July and have done it for the past two Sundays. It is valuable to open the shop when the barbershop is not open because it is quiet. The child has the run of the place with nothing going on: no music, no loud TVs, no loud conversations, and they seem to be adapting very well, so I want to keep this going because I am seeing progress with this.”

How long have you been accommodating children with autism in the pursuit of getting a decent haircut? 

“The goal is to give a decent haircut whenever someone is in your chair. It just happens that children with autism, who suffer from sensory issues, need a lot of extra time and effort, and they dislike doing it sometimes. The parents and I have to hold them a bit so the job gets done, but I am very successful when that child sits in my chair, and they learn to trust me.

What would you say to parents who would like a sensory-friendly barber to cut the hair of children with autism? What would you say to barbers interested in cutting the hair of children with autism? 

“Well, over the last 15 years, feedback from parents has been they have had bad experiences, so they try to give me fair warning about this. I don’t want to sound overconfident, so I tell them I will do my best and make it happen just like any barber wanting to attempt it. You must have plenty of patience and be very understanding so that the child is not at fault when you are trying to build a relationship of trust with them, and it seems to get the job done.”

What are your ambitions to allow more time to service the autism community by getting a haircut?

“As of now, I am the only one at the shop. It is my shop, so I took this responsibility upon myself. It seems like it will be every other week for now, but I already have the other barbers speaking to me about wanting to join in and do it, so we will see if we can increase the number of Sundays when we cut the hair of children with autism. There were kids with autism who came to the shop during the week when the shop was fully operational, and they didn’t do well. But when they come to the shop on a Sunday, when it is so quiet and peaceful, the job gets done, and the families love how well their child is under modest circumstances.

It motivates me even more when I see that big smile on the family’s face after finishing their haircut. It is another box checked off the list of something not to worry about, and I know I have a big responsibility when a child with autism comes to my shop. I make them my responsibility, so I care for them entirely. Every barber at Barber’s Edge has love and compassion for any child with special needs and on the spectrum. We do our best to get the job done and make the families happy with the results.”

Thanks go to Joe Alfano at Barber’s Edge, who has inspired other barbers to consider acknowledging the accommodations needed for children with autism. Many thanks to him for taking the time to answer our questions and spending a lot of Sundays helping the child with autism get the cut that they want.

Although most adults on the spectrum have the knowledge and abilities necessary for success in the workplace, most autistic adults remain unemployed or underemployed.  The Els for Autism Employment Programs team supports adults with autism in finding and keeping jobs that fit their interests, goals, and ambitions.

Westside Cleaners is an award-winning laundromat near our headquarters. After our Employment Team visited to provide all our accommodations to support their business, Christine Benoig, decided to become an Employer Partner of ours and hire one of our clients. I decided to ask her about her hiring experience and outcomes.

What made you decide to move forward with the hiring process?

“I wanted him to feel good; I liked the on-the-job training program. It seemed like a win-win scenario.”

How did the Els For Autism staff help you onboard the right candidate for your business?

“Both David Mendel, Employment Specialist / Job Coach, and Kaylan Wrightson, Employment Specialist / Job Coach, from Els for Autism assessed the need I had and matched me with Stephen.”

What were the most rewarding experiences of having an employee on staff with autism?

“So many compliments on him; Stephen does a better job than my regular staff.”

What message would you give to other employers about hiring employees with autism?

“They need to be part of society. There is a big need for employment for these individuals.”

After the interview with Christine, I wanted to get the perspective of the client that she hired to get the total impact of hiring someone with autism.

What was the feeling you had about getting hired at Westside Cleaners?

“I was waiting so long to get a job, and it finally came true on May 30. I felt excited and happy. How did your work experience with Sea of Possibilities help you with working at Westside Cleaners? I previously had no work experience before Sea of Possibilities. The work experience I had with Sea of Possibilities allowed me to greet and talk to customers, complete tasks, and work with a team. It was very valuable.”

What do you like the most about your job?

“I am proud of the uniform that I wear while I am at work, that way, I feel like I am a part of the team. I also really like the supervisor I work for and the colleagues that I work with. Everyone is pretty nice and accommodating there.”

What did you spend your first paycheck on?

“I went to Publix to get a snack, specifically the Flipz chocolate pretzels.”

I want to thank Christine of Westside Cleaners for taking an interest in one of our clients, Stephen, and acknowledging the gifts someone with ASD can provide to the workplace. I also would like to thank Stephen for vocalizing the pride that he gets from working at Westside Cleaners.

Be sure to listen to July’s Fore Autism Podcast, co-hosted by Dr. Nate Shanok and me. We are interviewing the Associate Director of Adult Services, Dr. Robin Jones, about the Stoops Family Adult Services Building opening next month and the employment services we offer as part of our selection of discussion topics. To become an employer partner with us, contact Dr. Robin Jones at Robin.Jones@elsforautism.org or call her at 561-320-9516

Ernie Els has many titles, including “World of Golf Hall of Famer,” “Four-Time Major Champion,” and “The Big Easy,” but to Samantha and Ben, he’s “Dad.”

He married his wife, Liezl, in 1999, and shortly after, a perfectly healthy baby girl, named Samantha (Sam), entered their world. A few years later, along came their son, Ben. “From a very early age, we could sense that there was something not quite the same. They all say boys are a little bit slower, we all understand that, but Ben was particularly slow even to start crawling and didn’t make a lot of eye contact.”

Since Ben was born in 2002, there was not a lot of information on Autism Spectrum Disorder (ASD). But when Ernie and Liezl started researching, they realized Ben checked every box. Ben was officially diagnosed with ASD at age three and a half years old.

They were living in England at the time and decided to enroll Ben in the same school as Sam. “He didn’t react well to the school, and, in fact, he absolutely despised going there. He couldn’t communicate with us, and it was tough on us all. Then, we started realizing, ‘You know what? Let’s try and find out what makes Ben happy.’ That is when our whole world started changing, and it’s because of a school we found in Florida.”

The Els family found a home in Palm Beach and enrolled their son in the school they had found. “He started loving it because he was going to school with his buddies; he was going to a place where he felt comfortable. He was so at ease, and he started smiling and just started opening up.”

The school was just what Ben needed; however, it was housed in an old commercial building with makeshift classrooms. “That’s when Liezl said, ‘It’s time to build something proper for kids with autism.'”

Using his golf platform, Ernie and Liezl, along with good friend, Marvin Shanken, of M.Shanken Communications, set out to establish the Els for Autism Foundation®, a 501 (c)(3), in 2009. They knew the best way to raise funds was through golf, and in March 2009, the inaugural Els for Autism Pro-Am raised $725,00, followed by the inaugural Golf Challenge in 2011, which raised $1.7 million.

In March 2014, they broke ground on a 26-acre property in Jupiter, Florida, to build the Els Center of Excellence® to serve individuals with ASD from age three through adulthood. The campus is now home to two educational wings, the Rupert Education Wing and the Shanken Education Wing, a Sensory Arts Garden, and the soon-to-be-completed Stoops Family Adults Services building. “At age 21, the system stops, either the child goes back into society or back home. Our adult services program strives to provide opportunities, such as employment and day programs, to these adults.”

But Ernie is far from done making the campus a haven for individuals with ASD. “Our next project is going to be building a recreation complex with a gymnasium, handicap accessible pool, and splash pad. We already have a little golf range and tennis courts on our property, and we do all kinds of recreation activities for individuals with ASD to come and just be themselves simply.” In fact, the Ernie Els #GameON Autism® Programs are changing the culture of sports and recreation by supporting individuals with ASD to feel included and confident to participate in recreational activities on and off our campus.

Even though Ernie has changed the game for thousands of individuals with ASD and their caregivers, he still reflects on the early years. “For those two years, I didn’t feel good about putting Ben in the same school as Sam. I kind of blame myself for some of the stuff, but now my relationship with Ben is fantastic. We’re best of friends. He loves golf, he’s not very athletic, but he loves coming to the golf course; he loves being outdoors; he loves people. He’s just a different guy.”

Els also commends the support of his daughter. “Samantha, she’s got to get so much credit, because, for a long time, she had to play second fiddle. And she’s come through it with flying colors. She’s a wonderful person, and she’s going to be looking after Ben when we’re not there, and she says she’s looking forward to that.”

To date, the Els for Autism Foundation team has raised more than $50 million to create a world of limitless possibilities for individuals with ASD and their families, thanks to the drive of Ernie Els, proud dad of Sam and Ben.

By Merrick Egber

We, as an organization, are dedicated to improving the lives of individuals with autism spectrum disorder (ASD), and our staff are on the gamut of helping to lead the way to a better future for them.

David L. Mendel, our Employment Specialist/Job Coach and Registered Behavior Technician, is one of them and also a father of two young boys with ASD. For this Father’s Day, I wanted to interview him on how the diagnosis of ASD for his two sons impacted him, why he started to work here, and what impact he is making daily to help others, like his sons, to understand their place in this big, beautiful world that we live in.

Originally from Philadelphia, PA, David obtained his bachelor’s degree at West Chester University where he had careers in retail management and being a middle school teacher. After the birth of his oldest son, Salvatore, in 2012, he moved to Florida in 2014 and made the career shift to Applied Behavior Analysis (ABA) therapy after his second son was born in 2015. David’s career in ABA therapy led him to be a Registered Behavior Technician (RBT) and is certified by the Behavior Analyst Certification Board (BACB). While working in the field, he also developed skills that would lead to him becoming an employment specialist allowing him to work with children and adults. David also volunteers in the community with his sons at various special needs events.

Before your sons were born, what did you know about autism?

“I didn’t know much about autism before my son’s diagnosis. I have a cousin who has autism, but it was never explained to me other than the way he spoke. When Salvatore (Sal) was diagnosed, I began to learn more about ASD. To build a connection and to have a better relationship with Sal, I also began my journey as an ABA therapist.”

Where did you first hear about the Els for Autism Foundation®?

“I first heard about the foundation when my wife and I were researching for a school for our son, Sal, when he was first diagnosed, but at that time we lived much further away.”

What services and programs did you or do you use at Els for Autism®?

“I work in Adult Services, as part of the Employment Team, and on occasion assist with the ADT program. My son attended summer camp last year, and Dr. Erin Brooker Lozott met Sal during that camp and saw he needed communication support. Dr. Lozott then collaborated with Claire Seefried, a Speech-Language Pathologist (SLP), and gave Sal an Augmentative and Alternative Communication (AAC) assessment which opened the door to him having his own AAC device. Now, he is thriving at communication. Also, my co-workers share the resources they found with their clients in the past that I did not know about, and I use some of those services to help both of my boys. I am forever thankful for their collaboration and the support they have given me.”

What made you want to become an employee of Els for Autism Foundation?

“In my career as an RBT, I always heard how well Els for Autism collaborates, teaches, and empowers the individuals they serve and their families. As a parent and an ABA therapist, I knew that I wanted to belong with an organization, like Els for Autism, so I can grow my career to help other individuals like my sons, Sal and Domenic.”

While working at the Foundation, how did your understanding of the condition grow?  

“I found, working in the Adult Services department, there is more than what I thought Sal could do after completing school. I have some clients that are like Sal in their communication and behavior. I now can see that Sal can have a bright future because of my experience with these clients. Sal can have a job, be productive in society, and have independence when he grows up. After all, isn’t that what every father dreams about their kid’s future?”

How has it impacted your family knowing that you are making a living improving the lives of those with autism, like your sons?

“Our family has become more hopeful, knowing more about the options Sal has for his future. Also, I know that there are people, like me, within the Els for Autism community that will strive for the best resources for a better quality of life for the community that my children are a part of.”

What’s the most rewarding part of raising sons with autism?

“My two boys are unique in their own ways. They have talents that some people take a lifetime to discover. However, for them, it’s natural, and it is rewarding to see them find their natural abilities.”

What does Father’s Day mean to you?

“Being a father is rewarding itself. I have two boys of my own that I raise with my wife. My boys may struggle, but I am so proud of their achievements and what they already have overcome. Father’s Day is a day that I can reflect on how lucky I am to have these two awesomely, awesome, of awesomeness boys that show me the enjoyments of life that I could only imagine until I had them. Father’s Day to me is a day I always reserve to hang out with the boys that call me Dad.”

We would like to thank David Mendel for taking his time and engaging with us about what matters about being a father and raising two sons with autism. We would like to wish everyone a happy Father’s Day and show appreciation for the fathers who have cared for you, supported you, and guided you when you needed to find a way through.

By Merrick Egber

May is Mental Health Awareness Month. From individual to group sessions, the Els for Autism Foundation® offers a suite of mental health services.

Start by asking yourself, “Am I feeling fine?” If the answer is ‘no,’ and you are affiliated with the autism community, then resources are available to you. As a follow-up to one of our latest news articles regarding the collaboration of Els for Autism and the National Alliance of Mental Illness (NAMI) to support individuals with autism and psychiatric diagnoses, we reached out to Cheryl Checkers, M.S., LMHC, the President of NAMI Palm Beach County, and Erin Brooker Lozott, BCBA-D, CCC-SLP, the Program Director at Els for Autism, about autism and mental health.

Why is Mental Health Awareness so important regarding treatments and therapies for the autism community?

Cheryl: “Children and adults with autism are likelier to experience a mental health condition than their neurotypical peers. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) 70 percent of autistic individuals are diagnosed with one mental health condition, and up to 40 percent are diagnosed with two or more mental health conditions. However, recent research suggests these numbers are even higher.

“A study published in the Journal of Clinical Psychiatry found that mental health conditions were already present in nearly 45 percent of preschool children with autism. In contrast, this study found that only about 14 percent of children without autism experience mental health conditions. In addition, several studies found that as individuals with autism grow older, the prevalence of mental health conditions increases.

“Despite these staggering statistics, there is a shortage of mental health professionals understand autism. In addition, the mental health and autism worlds can seem to be distinctly different systems of care, which often creates a barrier for individuals with autism to find the mental health support they need.”

Erin: “Due to 70 to 95 percent of children and adolescents with ASD having at least one co-occurring psychiatric disorder and 73 to 81 percent of adults with ASD meeting the criteria for at least one current co-occurring psychiatric disorder (Mosner et al., 2019), it is critical for providers working in the field of autism to have competencies in evidence-based practices for autism and mental health and mental disorders to make a change.”

As you both are mothers of daughters with autism, what could you tell me second-hand about your daughter’s experiences with mental health and autism?

Cheryl: “As a parent of a now adult daughter with autism and as a clinician who is an autism specialist, I continually witness the devastation untreated co-occurring mental health conditions cause. In many cases, these mental health challenges cause a greater impact on quality of life than autism challenges do and can lead to crises. This was the case for my daughter when she reached adolescence. Professionals continued to focus on her autism, and she received labels of ‘difficult,’ ‘defiant,’ and ‘manipulative’ rather than ‘overwhelmed,’ ‘depressed,’ and ‘anxious.'”

Erin: “From my daughter’s perspective, she is constantly trying to figure out why she must ‘feel the way she feels,’ ‘act the way she acts,’ and why she isn’t and can’t be like the ‘other girls.’ My daughter’s experiences with mental health have always seemed to take the front seat to her diagnosis of autism, with depression and anxiety causing her the greatest of struggles. In addition, she has experienced bullying and difficulty maintaining established friendships. My daughter has learned to look for the ‘yellow versus red flags’ to ensure she doesn’t misperceive levels of friendship or kindness. Finally, my daughter has had to experience going to multiple doctors and therapists continuously. During these appointments, people constantly discuss her areas of need versus her incredible strengths and talents. She now begs for the day she won’t have to see another doctor again. All this said, my daughter also understands the gifts her diagnoses bring and holds on to all the positives having a unique brain has to offer.”

What are some misconceptions about co-morbidities of mental health challenges and autism?

Cheryl: “There are several misconceptions about autism and co-occurring mental health challenges. Most are due to the lack of awareness and limited information on this topic. The most common, and perhaps most damaging, is the perception that any challenge a person with autism has is attributable to their autism. For this reason, the mental health of children and adults with autism is often neglected. This leads to untreated mental health conditions, which worsen and are harder to treat. In addition, as was the case with my daughter and many clients, it takes a mental health crisis to get the proper mental health support in place finally.”

Erin: “That medicine can fix the co-morbidities, one type of therapy alone will make the change needed for a life of happiness and success, and even with all the best doctors, therapists, and perfect pharmacological intervention, things will be fixed. Mental health and autism are about management; it is not about fixing anything. It is a lifelong journey that requires specialized care and a huge support system. Mental health and autism are about learning how to embrace the most challenging moments and celebrate the times of success, peace, and happiness. It is so difficult. The best analogy I can give is it is like having to work all day and night, and though you put all your effort and dedication into the practice, the difficulty level often (but not always) stays relatively the same.”

What are the resources in the community for NAMI and the Els for Autism Foundation for dual diagnoses of autism and mental health issues?

Cheryl: “I have strongly advocated for bridging the autism and mental health worlds for over 25 years. It brought me to my profession and continues to drive my professional and advocacy work. I lead the FAU Center for Autism and Related Disabilities (FAU CARD) co-occurring autism and mental health skilled task force. NAMI and Els for Autism are members of this vital initiative to increase awareness and mental health support for individuals with autism. This task force is a collaboration between CARD, community and private clinicians, mental health providers, universities, educators, and agencies working together to increase the capacity of professionals who can support individuals with autism spectrum disorder and mental health needs and their families.

“NAMI of Palm Beach County does an excellent job of increasing awareness of co-occurring autism and mental health conditions through community collaborations, speaker series, conference presentations, publications, and more. These exciting collaborations are helping to bring the autism and mental health worlds together. However, continued vigilance is needed to assure appropriate mental health treatment and support options are available for individuals with autism.”

Erin: “In addition to Els for Autism, NAMI, and FAU CARD, here are some additional resources: Jennifer Smyth (LMHC), Southeast Florida Behavioral Health, 988 Lifeline (formally known as 211), Vocational Rehabilitation, Agency for Persons with Disabilities.”

About the Interviewees:

Cheryl Checkers, M.S., LMHC, is the President of NAMI, PBC (National Alliance on Mental Illness, Palm Beach County). She is a Licensed Mental Health Counselor (LMHC) and the Founder of Checkers Counseling and Consulting. She is also the Clinical Consultant for FAU-CARD for the dual diagnosis of autism and mental health disorders.

Dr. Erin Brooker Lozott, Ed.D., BCBA-D, CCC-SLP is the Els for Autism Foundation® Program Director. Dr. Lozott is a doctoral-level board-certified behavior analyst and licensed speech-language pathologist. She is appointed to a scientific advisory committee and a clinical excellence committee for international autism organizations. She has co-authored several publications on autism spectrum disorder topics and has presented and consulted extensively nationally and internationally.

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A Post by Merrick Egber

With May 14 being Mother’s Day, we wanted to share the stories of three mothers from different backgrounds who have worked for the Els for Autism Foundation® to give people with autism better lives.

Our first mother is Liezl Els, the Co-Founder of the Els for Autism Foundation. She is the visionary of the one-stop-shop model for any autism treatments and therapies and the mother of Ben Els. Liezl is hard at work validating our Global Mission and Vision statement ‘Where Possibilities are Endless.’ In addition, her daughter, Samantha ‘Sam’ Els, runs a sibling support group called Sam’s Sibs Stick Together Room that meets every third Tuesday monthly.

Our second mom, Pam Minelli, founded the Autism Project of Palm Beach County. Without her presence, the wealth of autism services in Palm Beach County would be more impoverished. In addition, she serves on the Board of Directors at the Els for Autism Foundation.

Our third mother is Shelly Hedge, who has been our point person for accounting for eight years. She was hired around the time that I was and now has the position of controller. Her son, Collin Hedge, has participated in many of our programs and services. Her daughters also have supported him and other individuals with autism through their work with autism communities.

What were your first impressions upon hearing the son’s diagnosis of autism?

Liezl: “My reaction when Ben was officially diagnosed was not very dramatic as it was a mere formality for us at that stage. We already knew/suspected he was on the spectrum. But, for most parents, it probably comes as a bit of a relief as it gives you direction and support going forward.”

Pam: “It took us a while to diagnose Andrew. All the experts told us he didn’t have autism because he had excellent eye contact. We were finally relieved to get the diagnosis, so he could receive more services and enroll in preschool.”

Shelly: “Honestly, I was somewhat devastated to think he would not experience the same joys, love in relationships, and long-term independence. It was a flood of emotions.”

How did you adapt to your son’s new challenges?

Liezl: “We were lucky in the sense that Ben was an easy baby and toddler. Our lives didn’t have a        drastic change other than the interventions. Our changes came gradually over the years as he slowly fell further and further behind his peers in his development.”

Pam: “I speak for most parents in that your entire world revolves around caring for and advocating for your child. Those first few years of tests, assessments, ABA, speech, OT, and physical therapy were all-consuming. So early on, my husband and I established Wednesdays as our date night, which made a massive difference over the years.”

Shelly: “Collin was diagnosed at 13 months, so we immediately sought resources and programs to help him with his educational and therapeutic programs. We entered him in Early Intervention Program at St. Mary’s and subsequently found ABA, SLT, & OT for him as supplements. It was pretty overwhelming but gave us focus on his future goals.”

What was most rewarding about having a son with autism?

Liezl: “Ben’s laugh and constant wish to make others laugh was definitely the biggest blessing. He made all of us appreciate the smallest things in life. Things that before we took for granted, like crawling and walking, every milestone hit became a celebration.”

Pam: “Probably the unconditional love we receive from Andrew every day. I still get to snuggle and smother my 25-year-old son with kisses every day. We didn’t have to go through the terrible teens with Andrew. He hugs us every time he sees us!”

Shelley: “The community of individuals who have come into our lives, including therapists, teachers, parents, neighbors, co-workers, and even those in the community who have a unique understanding of or interest in autism and what the needs associated with it are.”

What advice would you give new mothers about having a child with autism spectrum disorder?

Liezl: “I think the most important thing to remember is that, just like no two individuals on the spectrum are the same, no two families will cope with it the same way. Forgive yourself for your mistakes and make peace with them. Love your child unconditionally and cope with life in the best way for YOUR family. You must find the rhythm for your family and make it work. We are all just trying our best to keep things together.”

 Pam: “I always advise Mom – get your child on the Medicaid Waiver waiting list with the Agency for   Persons with Disabilities!”

Shelly: “Consider the diagnosis a gift in understanding that not everyone is the same, allowing you to alter your goals for the future. Also, it is not the end of the world, as there are so many considerations to consider. You will find support along the way, and it will be manageable.”

What would you say if you came face-to-face with yourself in the beginning stages of motherhood?

Liezl: “If I saw myself, I would say, ‘RELAX,’ you will be OK.”

Pam: “If I came face-to-face with myself, don’t worry much about Andrew. You’ll all be OK.”

Shelly: “There is no time limit on the successes or growth of Collin. At the time, we thought if he did not speak before age 5, he would be non-verbal. However, each person has individual strengths, and even if he does not follow the ‘typical’ growth, he will still have a happy, joyful life that may not match the standards. Also, the people you will encounter on this journey will surprise you!”

What resources did you use to support you as a mom and your child?

Liezl: “At the start, just after being diagnosed, we used Autism Speaks. Over the years, we would try whatever worked best with Ben as we were living in the UK, and the resources were far more limited than in the US. We eventually moved to the US to start his school life at The Learning Center. Ernie had announced at one of his tournaments that Ben was on the spectrum, and from that point on, we had so many e-mails from people wanting to help. It was both heartwarming and overwhelming. A lot of excellent information came out of those letters, and if it weren’t invasive, we would try it. You quickly learn that you must ensure these suggested methods are evidence-based, or you will drive yourself and your child insane.”

Pam: “The Learning Center and The Learning Academy charter schools were a great source of support for many years for Andrew and our family. Andrew was supported in our home through Positive Behavior Support’s ABA services, and FAU-CARD was a great resource over the years. Our friends and family were also a loving support system!”

Shelly: “When he was little, our entire focus was to improve his learning skills. We enrolled him in over 30 hours of services for all modalities.”

What resources do/did you use that are provided by Els for Autism?

Liezl: “We, as a family, use just about everything we can from Els for Autism. Ben is a happy member of The Learning Academy and has also started with a few hours per week in the Adult Day Training program. Our favorite thing is the rec programs with dance being his all-time favorite.”

Pam: “Andrew attends Els for Autism’s Adult Day Training program Monday through Friday. We are all very excited about the opening of the new Stoops Family Foundation Adult Services building, where Andrew will have more opportunities to work on his communication, social and vocational skills. We are so grateful to Ernie, Liezl, Samantha, and Ben Els for everything they have done for our family and many more families in Palm Beach County and worldwide.”

Shelly: “So many, including the Adult Day Training program, speech language therapy, and all the rec programs (tennis, fitness, golf, yoga, kickball, music, and art). He has also participated in vocational rehab. We are so grateful and fortunate to have these programs available to him as an adult! We are so looking forward to the continued growth of the Adult Services with the new building and programs!”

Thank you Liezl, Pam, and Shelly for sharing your stories. Show your appreciation to the mothers who cared for you, showed you support, and guided you when you needed to find a way through.

This month’s podcast has a special guest, Gyasi Burks-Abbott, who wrote “My Mother’s Apprentice: An Autistic’s Rites of Passage,” where he will talk about being raised by a single mother. His journey as a child with autism is one of the many reasons he received the 2022 Autism Spectrum Award from Els for Autism. My Co-Host, Dr. Nate Shanok, will also discuss a study that measures the impact of mothers on children with autism.

Els for Autism® & NAMI Collaborate to Support Individuals with Autism & Psychiatric Diagnoses

West Palm Beach, Florida (April 13th, 2023) – April is World Autism Month. Recently, we partnered with the National Alliance on Mental Illness (NAMI) of Palm Beach County for the Lecture Series: An Overview of Autism Spectrum Disorder (ASD) & Mental Health.

Our very own Dr. Erin Brooker Lozott, Ed.D, BCBA-D, CCC-SLP, explored her expertise as the Director of Programs for the Els for Autism Foundation® while providing an in-depth review of the autism spectrum disorder condition, associated characteristics, and common co-occurring disorders.

Lozott said relationships with organizational partners, like NAMI, are crucial. “NAMI is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.”

With 85% percent of autistic children also having some form of co-occurring Psychiatric Diagnosis and 73-81% of adults with ASD meeting the criteria for at least one current co-occurring psychiatric disorder, individuals with autism, their caregivers, professionals in the field, and autism organizations must combine forces with NAMI, both in research and in practice for actual change to occur. “NAMI’s new initiative to begin offering education and resources on autism has the potential to be transformational as access to sound support and services for people with autism and mental health has been previously limited. Therefore, knowing I would be a part of combining the fields and resources available to people affected by autism and mental health was significant to me both professionally and personally.”

During the lecture series, attendees also heard from FAU CARD’s Cheryl Checkers, President of NAMI PBC, who spoke on the importance of females receiving a proper autism diagnosis. “Cheryl Checkers is a well-respected and seasoned licensed mental health counselor and NAMI board member. Cheryl has been a trailblazer in the field of mental health and autism. Her presentation on females on the spectrum was educational, innovative, and inspiring.

“I hope the information shared in both my and Cheryl’s presentations will spread beyond the attendees as this knowledge is necessary to maximize the outcomes of people with autism and mental illness.”

Progress in connecting mental health with autism has been made; however, there is still room for improvement. “We have university programs integrating information on autism into the training and licensure requirements of students working to become mental health professionals. And now global organizations, such as NAMI and Els for Autism Foundation, are collaborating and sharing information with families ensuring access to research-based information and resources.”

May is Mental Health Awareness Month, so it is important to continue working together to generate the best outcomes for our communities!

Sue Abramowski – Human Services Professional, Advisory Board Member

“The world needs all kinds of minds, we’re not all meant to be cookie cutters.”

Jessica-Jane Applegate – Professional Swimmer

“Ignore what anyone has to say. If you believe that you can, you can do it”

Rachel Barcellona – Pageant Professional, Autism Spectrum Award Winner 2017

“I show people that I can do anything despite my disability. Be yourself no matter what, and don’t let others define who you are.”

Andrew Blitman – Tutor and Mentor – Firewalls Centers, Advisory Board Member

“Asperger Syndrome
– Autism –
As I may have it,
Is a developmental disorder
That affects the way
People grow up
Psychologically
And neurologically.
We are, in most situations,
Completely intact intellectually.”

Everett Borislow – Morning Receptionist, DJ – Els for Autism Foundation

“I would say that my executive functioning is both a blessing and a curse. It can help or hurt in a way.”

Dani Bowman – Head of DaniMation Studios – an Animation Company

“English is my 2^nd language. Autism is my first”

Gyasi Burks-Abbott – Writer, Public Speaker, Organizationalist, 2022 Autism Spectrum Award Winner, Advisory Board Member

“In ASD success is a spectrum. You don’t need to be an inventor, author to be a success story.”

Tracey Cohen –Marathon Runner

“Despite societal norms, every individual, on and off the autism spectrum is unique. These differences should be celebrated, not feared or ridiculed. And despite these uniqueness’s, we are all really much more similar than we are different.”

Joshua ‘Deersey’ Deer – Assistant Equipment Manager at Lone Star Brahmas/NA3HL Texas Brahmas, 2015 Els for Autism Spectrum Award Winner

“As a golf instructor, I wanted to teach kids with no disabilities as well as kids on the autism spectrum to help them understand the different areas of the game of golf, so that the kids could become good golfers and I can help them with their talents. And for the kids on the autism spectrum, I work hard to give them the passion for the game of golf just like me”

Mike DiMauro – UberEats Driver, Advisory Board Member

“A person with ASD should be in a community that is loved, kind and with the encouragement to succeed.”

Merrick Egber – Communications Specialist – Els for Autism Foundation, Chair of the Advisory Board

“I was born with this, an integral part of my personality, but I will say that whenever you are down, I possibly will feel down with you, and whenever I feel up, I will feel up with you.”

Carly Fulgham – Technology Project Lead – National Bank, President of Autism Society of America

“When we’re desperate for oxygen, we all look the same.”

Dr. Temple Grandin – Professor of Animal Husbandry, Colorado State University.

“The world needs all kinds of minds”

Nick Hine – Royal Navy Second Sea Lord

“I am extremely focused, I love solving problems and finding the most efficient way to do things. I am excellent at making rational decisions based on data. I don’t ‘trust my gut’ – I need evidence before I make any decision. I have always been very honest and frank in my style of communication and have a relentless drive to find outcomes. Being in a nuclear submarine with no windows and very few distractions was the perfect place for me. I could just focus on my job.”

Anthony Ianni – Center – Michigan State Spartans, Motivational Speaker

“Remember we are all different in many ways, but in the end we are all the same because we are created equally and we ARE all people.”

Jim Hogan – Chief Innovation Evangelist & Accessibility Leader – Google, 2020 Autism Spectrum Award Winner

“When I say “I feel like I belong at Google,” that doesn’t mean that every day is my best day ever. There are things that happen here that can be very hard on people. Performance reviews can be humiliating, just because two people may not see the world the same way. The best advice I give to managers is to lead with their hearts – if there’s a problem, don’t cast people out, try to understand them. If you lead others with your heart, their outcomes will probably be supercharged.”

Adam Jones – Barn Attendant at Madison Fields, Autism Spectrum Award Winner 2018, Advisory Board Member

“It takes a whole community to help someone with ASD. It takes everyone as a whole.”

Dr. Kerry Magro – National Speaker, 2022 Autism Spectrum Award Winner, Advisory Board Member

“ASD doesn’t come with an instruction guide. It sometimes comes with a family that never gives up.”

Billy Mayfair – Professional Golfer

“I know it’s helped my game, and it explains why sometimes I am that athlete that can really focus better than other people and other golfers did. Of course, I used to think that was normal, but I know now that this helped me in that way.”

Gloria Mendoza – SAP S/4HANA Technical Quality Manager, 2016 Els for Autism Spectrum Award Winner

“Probably the best part about working {At the SAP Autism At Work Program} is that I can use the skills which I have studied whilst being among people that understand who I am and how I’m different from everybody else,”

Haley Moss – Attorney, Autism Spectrum Award Winner 2019

“I want to see a world where people with disabilities achieving things is a norm rather than an exception. It isn’t a surprise when you see a person with autism practicing law or doing something amazing in the world.”

Wentworth Miller – Actor ‘Prison Break’, ‘The Flash’

“This isn’t something I’d change … immediately being autistic is central to who I am. To everything I’ve achieved/articulated.”

Paul Morris – Assistant, New York Medical College of Human Resources – Advisory Board Member

“When I was a little boy I didn’t know I was different. I did not know how to handle friends. I was non-verbal till age 5. I had to be taught how to speak, how to listen, how to think. The years were hard. Sometimes I just didn’t understand, but look at me now!”

Elon Musk – Entrepreneur and Business Magnate

“I found it rewarding to spend all night programing computers, just by myself. Most people don’t enjoy typing strange symbols into a computer by themselves all night. They think that’s not fun. But I really liked it.”

Gary Numan – Solo Artist ‘Cars’

“You know, they talk about Asperger’s people as being obsessive, as if that’s a bad thing. I don’t think it’s a bad thing, it gives you skills, which in certain professions are incredibly useful, and I don’t know if I would be here without them, I don’t know if I’d have the drive.”

Isabelle Piwnicki – Retail Associate – Girl AGain, Operations Assistant – Sephora, 2021 Autism Spectrum Award Winner

“I was diagnosed with autism when I was two and a half. I have been dancing since I was 8 because dancing allows me to not only live but also to be myself with the freedom to be me.”

Alex Plank – CEO – Wrong Planet, LLC

“Social Skills training..like stories…don’t work….The best way to learn social skills is through trial and error.”

Katie Santoro – Medicare Clinical Note Reader – Cardinal Health, Organizationalist, Advisory Board Member

“The world should know that just because one is verbal and has a job, they still have challenges. Please recognize and respect our challenges.”

Ron Sandison – Professor of Theology at Destiny School of Ministry. Advisory Board Member.

“My dad at first told me, don’t tell people about your disabilities. Let them see your gifts and focus on those. But it was actually the disability in me sharing that where people were able to connect. Every person has some weakness or some limitation, but our limitations are a good thing because they make us an expert in other areas or areas that we’re stronger in. As we use our strengths, we compensate for our weaknesses.”

Dr. Stephen Shore – Clinical Assistant Professor of Special Education – Adelphi University, Board of Directors at Autism Speaks, Advisory Board Member

“Autism is really more of a difference to be worked with rather than a monolithic enemy that needs to be slain or destroyed.”

Dr. Vernon Smith – Experimental Economist, Professor of Economics – Chapman University

“Perhaps even more importantly, I don’t have any trouble thinking outside the box. I don’t feel any social pressure to do things the way other people are doing them, professionally, and so I have been more open to different ways of looking at a lot of the problems in economics.”

Armani Williams – Philanthropist, Motivational Speaker, NASCAR Driver  

“I was diagnosed with autism when I was 2 years old, but I didn’t know until I was older. It was around the time I was heading into middle school that my parents told me. It immediately made me think back on all of the experiences that I had as a young child. That’s when it started to make sense for me. Once I could put all those memories together, that’s when I realized just what it meant to be on the autism spectrum.”

James A. Williams – Philanthropist, Pianist

“If you want to be a musician, a desire or passion needs to be relevant or a self-interest. Find what your likes and tastes are regards to the music that appeals to you; find enjoyment and strive to learn, push yourself, and reward your progress. Communicate with instructors about what you want from learning and/or find ways to learn what works for your needs.”

Connor B. Sturgis – Philanthropist, Customer Services – Publix, Advisory Board Member

“People with ASD have jobs and can buy a house, it just takes us a little longer to get there but we can do it.”