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!

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.

Ever since the campus shut down last March, the two Palm Beach County public charter schools on our campus have had to slowly rebuild their infrastructure bit by bit. Originally, classes were going to be at least partially virtual, but by the time the new Fall Season rolled around, Palm Beach County School District announced that a decision was made to return to full in-person learning. It was thought that a transition to full in-person education may be the best way to teach the children, especially since it may alleviate social isolation, and it may also allow them to concentrate on their studies more. The classrooms in the Rupert Education Wing and the Shanken Education Wing were suited up and ready for in-person education, including air filtration equipment throughout the buildings. With live classes back, the Foundation’s Recreation Services Coordinator, Kelley, started back up all of the afterschool recreation programs that are open to the greater community including art, yoga, kickball, golf, and more. It has been great to have all the staff, students, and parents back at The Els Center of Excellence.

The last time I was in high school was close to 20 years ago, so I wouldn’t be a good person to talk about the facilities we have on campus for education. I managed to get time to speak with Melissa Levine and her son Jack Levine. Jack has been a student at The Learning Academy at The Els Center of Excellence (TLA). It was his birthday earlier in the month of September, and he has been used to seeing the changes going on with The Learning Academy. He is also attuned to the school environment around him, and thrives there, along with attending some of the Foundation’s programs and services. Since Jack is so involved with activities on campus, I decided to interview him and his mother Melissa about their experiences going to school at The Learning Academy and transitioning to in-person instruction 100%’….So, I sent them a bunch of questions to respond to. Here we go.

Q and A with Melissa Levine:

Merrick:  Before Jack went to TLA, which is a charter school, did he attend a regular public school?

Melissa: Jack attended a private school for Emotionally Disabled students back in New Jersey from when he was about 5-14 years old. By the time he left, he was in a self-contained classroom with a ratio of students to teachers that was approximately 2:1, in a classroom of 8 students. He transitioned to an Autism school in New Jersey about 6 months before we moved to Florida to attend The Learning Academy.

Merrick: What does Jack like about the environment of TLA?

Melissa: I feel that Jack has finally found a home in a school that truly understands who he is as a person and as a student. The teachers and staff celebrate him every day, from the minute he walks through the door in the early morning to the emails he receives nightly from the many different staff members that he corresponds with at our house. His self-confidence and self-esteem has dramatically improved, as a result of the love and support he receives from the staff at TLA.  You can actually see his confidence in the way he carries himself as he walks into the building. Jack is with a peer group in his classroom that provides emotional support for him as well. He has made very good friends that he video chats with nightly. Jack actually had his very first birthday party 3 weeks ago, with a small group of boys in his class. The TLA environment enables him to be exactly who he is.

Merrick: How did Jack feel about going back to school for in-person instruction in over a year?

Melissa: Jack was so excited to get back to school to see his teachers and friends, but at the same time he was very nervous. Jack took very well to the virtual learning environment. His independence within our home environment grew significantly. He took responsibility over his academic organization and learned how to effectively problem solve issues if they arose without seeking help from us. Communication does not always come easy for Jack, so I think working through the computer gave him a buffer. I feel that he did not have to be “on” all the time, which actually helped to develop his self-confidence when participating in classroom activities. I think he was nervous to go back in person because it takes more effort for him to attend and process what his teachers and peers say when he is in person. He has made a beautiful transition back to school and I feel that he has retained the skills that he gained from virtual learning.

Merrick: What does Jack want to do after graduating high school?

Melissa: Jack has had a complicated medical history. As a result, he has always been interested in watching videos about X-rays, MRIs, and surgeries.  So, he was leaning towards doing an internship in a hospital. However, since being a student at TLA, he has recently expressed interest in teaching. The teachers and staff at TLA have had such an impact on his life, that he wants to be able to do the same for other kids that have learning challenges. He really enjoys taking on that leadership role and mentoring other students.

Merrick: What would you like to tell students, and parents, about the two charter schools on our campus and the educational opportunities?

Melissa: My husband and I took a chance. We left our friends and family. We moved to Florida with hopes that TLA would be a good fit for Jack. We had heard from various people that The Learning Academy and The Learning Center were great schools for Autistic students. We at least knew that he would be better off in the warmer climate, as he always thrived during the New Jersey summers. We could have never imagined the social, emotional and educational growth he would have experienced through these two short years, despite this weird and challenging time in our lives. TLA has far exceeded our expectations. From the most amazing group of teachers and therapists Jack has ever worked with (and there have been MANY) to the after school programs he has been able to participate in through the Foundation. The staff at TLA has provided us with comprehensive information that is preparing us for Jack’s future, which is uncertain because he is constantly growing and changing every minute of every day. We have the staff at TLA to thank, as they are always challenging us to do more with and expect more from Jack.

Q & A with Jack Levine

Merrick: What do you like about TLA?

Jack: I like meeting new teachers, going outside with my friends and I like learning new things about physical education.

Merrick: How did it feel to go back to school for in-person instruction…

Jack: I was kind of nervous but also excited.  My first day back with my friends and teachers was awesome.

Merrick: What do you look forward to the most whenever a new school year starts?

Jack: I look forward to seeing my friends and teachers after a long summer break.

It is great to see an individual thrive enough to where they want to use the experiences they got from our educational system to inspire and educate others, right?

It is also good that Jack has managed to adapt to the realities of our educational system over the past two years, and has even used his newfound confidence in a virtual system to translate to in-person instruction, even if he was very nervous about doing so.

In the next article, because October is National Disability Employment Month, I will write an article about my experiences working with the Els for Autism Foundation!

As we get ready for the new school year to begin, re-open our lobby, and begin construction on our new Adult Services Building, let’s take a look back at what we’ve accomplished since we had our campus lockdown in March of last year……and how our programs and services speak well of us, the families and clients we serve, and our adaptability.

It was very important that while our campus was not in service, we were able to provide our clients with supports and services for the same kinds of needs at home that they sought out from our Clinical Department at The Els Center of Excellence. Through our conventional online platforms, we created a series of educational and social program developments to help our clients. We also developed a telehealth model and gave free access to a new virtual program called Storytime with Alternative and Augmentative Communication (AAC) so that everybody, from all over the world, could join in improving their vocabulary with social and visual supports.

We also developed programs around the social, mental health and life skill needs of our clients. The Spectrum Book Club and our Connections Club created an awareness of our community even within our own homes. We kept our Mental Health Support Group for adults, and even expanded it by providing it to Teens, along with a group for siblings of individuals with autism called ‘Sibs Stick Together’,, which expanded to “Sam’s Sibs Stick Together” led by our very own Samantha Els. We started offering our Daily Living Skills classes virtually, and brought the adults with autism social group (The Spoken Wheel Society) online for the very first time.

Our Recreation Programs also saw a change in the curriculums. Our Musical Theater Group would end up having our actors and actresses participate in film productions, and our Inter-Ability Chorus Group had their first virtual concert. Many of our traditional programs were brought virtually for the very first time with successful results! We even had our famous six week Movin’ and Groovin’ Summer Camp go virtual for 2020!

As the months went on, we looked at how we could start offering live in-person sessions again, but only with the best practices, following standardized protocols and procedures against the pandemic while exercising the greatest of cautions. Our Work Experience Program would have our clients doing work around the campus and eventually go around the community offering snacks and lunches as part of our new #WERFOODIES Microbusiness. Our Adult Day Training Program which serves to help some of our adult clients learn valuable skills, engage in recreational exercises and even work on another microbusiness known as Sea of Possibilities, also came back to campus.

Recently, we brought back the full Golf Challenge Series and also our on and off-campus Spoken Wheel Society Meetings along with having Live Spring and Summer Camps. We had a very successful Second Roots and Ruts 5K during Autism Awareness Month in April! We’ve also really buffed up our Youtube feed with more webinars and informative videos than ever before. And you may have heard about all of this on our new Fore Autism Podcast, which started in April of last year, co-hosted by Dr. Nate Shanok and I!

I would hope that if you’ve read this far, to read up on our 2020 – 2021 Community Report too!

We love to hear the stories of adults with autism as they embark on their employment journies. This diary was submitted to us by our friend Scott Smith about his first day of work at Walmart and gives a first-hand account of his experiences on the job. Thank you for sharing this with us, Scott!

At 12:40 I walked into Walmart excited and completely terrified. I get there and I go into this little room where they shine a blue light at my brain to check my temperature. After that, I met this man who I asked if I could keep my backpack in his office. I then made my way to the cash register and met my first coach, I say first because I had three. They showed me the basics and I was excited to try it on my first customer which happened to be my dad, buying running shoes. After that I captained the register I scanned items, mostly bananas, and tampons, a lot of tampons. They are the most popular at Walmart. After 2 hours of working, I was given a 15-minute break. During this break, I learned about the break room, and realize this is where people keep their stuff. So, I needed to find the guy whose office my backpack was in. There was only one thing I had to do, to do this. I had to page him on the intercom. I picked up the phone, and I asked for him, and my voice was being heard all throughout the store, and it sounded weird. Like an alien robot with a cold. That type of weird. After my break, I met my next trainer who let me scan items and put them in bags. it was pretty tiring. Also, Since I did not have the right training I could not check out beer or put any alcoholic beverages in the bags. That is why I let the trainers do that. Now, this one couple I was checking out had a case of Corona beer and a lot of food. So I look at the trainer and I say, ” I’ll do the food. I’ll leave you the corona.” She laughed. I think she found it funny. After four more hours of working, I had lunch in the break room for a half-hour since there weren’t a lot of people to talk to, and there was more life in a cemetery than in that break room. I just decided to sit down at the table, turn on Disney plus, and watch Phineas and Ferb. After a few more hours of working my shift was finally over. It was 7:30 and I was pooped, everything hurt. My legs, my bottom, my feet and my back. I couldn’t even walk right on the way home which was sadly up a hill. All in all, it was a really good first day that can only get better from here.

An Interview with Erin Lozott, M.S., CCC-SLP

By Merrick Egber

When I was very little, I had no sense of actual identity until I played the first Super Mario Brothers for the Nintendo Entertainment System (NES), from then on I wanted to learn how to read and to become a video game designer. Then I would make friends based on how enthused they were on the topic of video games, like I was. I still didn’t have a regular hobby, though, outside of roleplaying and drawing/coloring. I could never program, or design, a video game so that was off the shelf.

As I grew up, I needed something to make myself feel more purposeful, more worth it, and to make my life more meaningful. When I got introduced to The Beatles, in my teens, I was floored! The music was sensational, I wanted to be like them! So I started writing song lyrics and poetry, and I finally found my expressive vibe. I also found my little world that I could call my home, the ‘60s countercultural world, and there were people out there that I could relate to, it was so great!

It was thanks to all of that that I finally found myself. But anyone else could’ve called my interests ‘geeky’, ‘nerdy’, (funnily enough) ‘autistic’ which I’ll always wear with pride (who wouldn’t), but my interests, instead, were celebrated. My mother would create these graphic designs to fit my poetry, I would go to Beatles festivals, and I would constantly keep on writing and writing.

In celebration of Mental Health Awareness Month, I wanted to write about this symptom of having a ‘special interest’ as being a thing worth paying attention to, and, perhaps, worthy of being celebrated. A ‘special interest’ can be a strong identifier for a person with ASD and a strong mental health helper and nobody may know it better than our Director of Clinical Services, Mrs. Erin Lozott, who it was decided to interview for this article.

Can you introduce yourself and your position at the Foundation?

My Name is Erin Brooker Lozott and I am the Director of Clinical Services and Global Support at the Foundation.

How did you get involved with the Foundation? Especially in the Clinical Services Department?

I learned about the Foundation from our Executive Director, Dr. Marlene Sotelo when she, Mrs. Els and a few key members of the Foundation toured the autism center in Atlanta I used to work at in an effort to get ideas for the buildings. Dr. Sotelo had shared my work and background with Mrs. Els and at the end of the tour, they asked if I would want to come home (since I grew up in South Florida) to work with the Foundation and help open the Center. In learning more about the mission and vision of the Foundation, in taking a trip down to see the construction site, and in volunteering at a fundraising event, it was clear to me that Els for Autism was meant to be my new professional home.

The clinical services department was a given as I have been a clinician my entire career, I was coming in with several years of experience in building a autism focused clinical practice, and had experience in managing clinical services and clinical research projects at an autism center for excellence. Dr. Sotelo and I had been professional colleagues for many years, so she had firsthand knowledge of my skills. In discussing the programs and services Dr. Sotelo was envisioning to offer at the Foundation and in aligning those ideas with the Els’ family vision for the center, hiring someone to lead and oversee the clinical services was a natural next step.

What have you learned about individuals with autism since you started working in the field of neurodiversity?

Individuals with autism are excellent employees. Individuals with autism fill in the blanks to salient details in the world individuals without autism can’t see at first glance. Individuals with autism have unique needs that often benefit from individualized supports and accommodations, and when these accommodations are made an increase in productivity and efficiency of work is occurs. I have learned that an accommodation for one, when well supported, can be transformed into an effective system change for all. I have learned to learn from others. I have learned to be a better and more active listener even when someone is communicating without words. The field of neurodiversity embraces and celebrates individual differences. It has helped me learn that ‘normal’ is not a compliment. Working in a neurodiverse field has taught me how to better match work responsibilities to individual areas of strength and interest. Working with people with autism has fulfilled my life. I have hope for my daughter and her future now that neurodiversity is a way of life in communities and the workforce.

One of the symptoms generally observed in individuals with autism is special interests – or special passions. How important is it to the overall identity of the individual with autism? How prevalent is it for people with the condition?

I feel areas of special interests are important to foster if those interested are safe and healthy and can be fostered in a manner that may fulfill the quality of life indicators all people have a right to experience. If the special interest happens to not lend to a skill safe or healthy to foster, then it is important to continue building skills while monitoring one’s areas of interest in the case a new skill learned results in a passion that can be further explored and enhanced.

I don’t know how important a special interest or passion is to individuals with autism. I think this question is best answered by people with autism. My initial thought is that each person may have a slightly different answer. Some may feel it is significant, some may feel it is a need versus how they identify themselves, and others may not even think about it. I would love to learn more about this topic. This is an excellent question to continue to explore.

Special or what is commonly termed restricted areas of interest and activities are core to the diagnosis of autism spectrum disorder. How an interest manifests in one person versus another is unique to everyone.

From your perspective, why do you think that all is? Remember, no wrong answers. 

If you are asking about why I think special interests are present, my response would be that people with autism often don’t gain input from social interactions in the same way that people without autism do. When a person with autism experiences the same level of stimulation or fulfillment as someone without autism does from social interaction, then it would stand to reason that the individual with autism would likely become hyper-focused or better yet an expert on that topic/in that area. People with autism are neurologically rewarded for paying attention to nonbiological/non-social-emotional stimuli in a similar manner that a person without autism is neurologically rewarded for engagement in social interaction.

While these types of interests may be observed as eccentricities, quirks, or non-understandable, you see the benefits of these. Can you explain the benefits from an BCBA ​or SLP perspective?  

Motivation is necessary for learning. To communicate you first need to have the motivation or intent to want to communicate. If you can establish motivation and use a strength-based method of teaching within meaningful and purposeful activities learning experiences are going to be engaging. When a person is actively engaged in a learning process, learning occurs more rapidly. Trying to teach or establish new skills in a manner that works against the grain slows down the learning process and may ultimately hinder one’s learning potential.

Let’s role play – I am a child with a distinct interest in stethoscopes. How would you work with my interest in stethoscopes?

You are so smart and creative, Merrick! This is great. I may teach all the language that goes along with a stethoscope, teach language about the professionals that work with a stethoscope, help a child learn to build words from the letters in the word stethoscope, teach money skills related to the cost of a stethoscope and include the item within word problems or learning scenarios to prompt interest. I may then teach about an actual stethoscope and use it as a representation of how to listen and attend carefully. I may integrate it into a pretend play scenario for a young child. I may take pictures and have the stethoscope become a part of a reinforcement system, learning how to count by listening in to heartbeats, etc., and many more! Hope this matches your desired response!

How can caregivers use special interests to help them communicate with an individual with autism? Are there any programs or resources that you recommend helping parents foster connection and communication with their child? 

Special interests should be seen by others as a significant part of a person with autism’s life and can serve for others to better understand the lens through which a person with autism sees the world.

It is important and research now shows it is beneficial for families and professionals to leverage the special interests’ areas of individuals on the spectrum. Families can use special interest areas to help develop language, communication, social skills, coping skills, and emotional wellbeing amongst many other skills. Engagement in special interest areas can be taught to be used as a source of self-regulation and as mentioned before these interests can be fostered into career paths or jobs.

Families and professionals can find ways to lessen or mitigate challenging behaviors by way of embracing areas of special interests. Families can help by remembering special interest areas are not hobbies or activities, but instead, they are often a way of life. To sum this point up, John Gabrieli, a neuroscientist from the Massachusetts Institute of Technology stated, “If this is their natural motivating capacity, then rather than try to suppress it, it might be more helpful to the child to build on it.”

A few strategies for families include:

• Making a list of their child’s special interest(s)
• Apply the identified interests of the student into various forms across teaching areas.
• Use the child’s interest to make social connections
• Update the list of special interests as they change while continuing to integrate the student’s interest into learning experiences

What would you call your special interest or passion? How has that informed you?

Autism-It has helped me embrace the details in life, have humility, look through multiple lenses before making a decision or judgment call, think from two polarizing perspectives, look for the light in the moments, not the days, always continue to move forward, be a better mother to my daughter, travel the world, have an appreciation for neurodiversity, and have a longstanding career that is not just a job, but instead my way of life. My special area interest in autism has helped me become the professional and person I am today. It has helped make me the best me I can be!

Erik Mollengarden started working as an Image Verifier at CAI, a purpose-driven business technology services firm, in December 2020. His favorite part of the job is working from home, where he uses computer software to process images of license plates from major highways for violations invoicing.

Together, Els for Autism and CAI fight to head off the hurdles that keep unemployment rates high. The shortage of vocational training, inadequate support with job placement, and cultural stigma can be major challenges for those with autism seeking employment.

Before he landed his job at CAI, Erik received vocational training through Els for Autism’s Work Experience program at Jupiter Medical Center. When the pandemic forced the program to end early, Erik and his job coach, Howard Thomas, began working together to find a position where Erik could utilize his strengths and a work environment that values his contributions and supports his needs. CAI’s Autism2Work (A2W) program was a natural fit.

Erik’s speed of verifying an average of 300 images a shift (sometimes over 400), coupled with his accuracy in identifying errors and quickly making corrections, makes him a valuable employee.

“Erik has an amazing eye for detail and catches the subtle errors that other image verifiers might not see,” Howard said. “We are really proud of him and his hard work.” Howard’s role as Erik’s job coach is to act as an extra layer of support for both the employer and employee.

“My job coach checks how I’m progressing, and I share my screen with him, and sometimes he observes me seeing if I’m checking the license plates correctly,” Erik said.

Through the A2W program, CAI maintains a company culture that is ready to embrace neurodiversity. CAI subject matter experts train employees who will be working with A2W associates and Team Leads are certified to work with individuals diagnosed with autism spectrum disorder by the International Board of Credentialing and Continuing Education Standards (IBCCES).

As a CAI Violations Enforcement Supervisor, Otilia Lynch Thomas has found working with people on the spectrum to be “inspiring.” While each person may have varying needs, Otilia consistently sees the same potential.  “You just have to have patience and get to know their personality,” Otilia said. “I want them to feel comfortable and succeed, just like everyone else.”