Author: Merrick Egber (October 2018) I would like to thank our Foundation, for having another great experience at the largest fundraising event of the year, our own Golf Challenge Grand Finale.

I especially would like to congratulate our latest  Els for Autism Spectrum Award Winner, Adam Jones! It was great getting to meet him, and his family, and to be able to converse with him about a topic near to our hearts, the state of Maryland.

This article, however, is about a subject that has been a long time to come and that I apologize for not getting to sooner, the subject of “women with autism”.

Women, who happen to have autism, are one of the biggest topics facing the community today. Due to societal expectations, and the general nature of what it has always been to be a woman, it is a lot harder to get the proper diagnosis and treatment for those with the condition, than for men, and many times it may be delayed. When they do speak up in the community though, they can be noteworthy personalities, from Temple Grandin to Susan Boyle, to the thousands of views on Youtube videos of female personalities explaining the subject, to two prior Els for Autism Spectrum Award Winners, Gloria Mendoza (2016) and Rachel Barcellona (2017), both of whom I managed to get interviews with for this article.

Ms. Mendoza is perhaps most well-known to our readers for being the public face of one of the Foundation’s most significant partners, SAP, for their Autism at Work Program, a well-recognized program to hire people with autism in the tech world. Ms. Mendoza, through her father reading an article from the Economist, rose through the ranks of SAP rapidly from an internship to a full-time position in a few months, and recently has completed many outreach efforts, even speaking at a SAP TechEd talk to “give advice to employers and employees on the spectrum”.  This was featured on a CBS Sunday Morning segment to talk about her experiences, found here: https://m.youtube.com/watch?v=3b5OGx-v6Ao.

 

Miss Florida International 2016, and also the National American Miss (NAM) Florida for this year, Rachel Barcellona is a real role model in her community. Currently enrolled at the University of South Florida, she is majoring in International Studies, in hopes that she could become a Global ambassador to the UN. She is also a writer, finishing a children’s book called “Blubbingsworth’s Big Friendship”, and is currently working on a meditation on autism in the Victorian era called “The Silence of Sylvia Kane Currently she is working at the University of South Florida – Center for Autism and Related Disabilities (or USF – CARD) and the Unicorn Children’s Foundation, where she says that it’s fun to showcase the benefits of neurodiversity, to raise money to help people, and to show that anyone with autism can accomplish their dreams. ”. If that wasn’t enough, Rachel is also an accomplished singer.

When asked about winning the awards, the responses were positive. Gloria recognizes it as one of the proudest moments in her life. Shortly after she sang the National Anthem at the 2016 Els for Autism Golf Challenge in Philadelphia, PA, this event allowed her to view herself as a “role model to everyone on the spectrum, both young and old”, along with finding it a “very emotional and touching experience”. Because of  winning the Spectrum Award, she got to attend more Els for Autism Foundation events, grew more relationships with people, and found that, due to her award-winning status, she “couldn’t be happier in her life now.” Rachel saw it as a “wonderful” experience, a loving one, and that when she gave the award to Adam Jones (2018 Els for Autism Spectrum Award winner), she felt so happy giving it to an “equally deserving member”. The impact of winning the award was to show to a lot of people that she could do a lot of “amazing things”, and just because she has a disability doesn’t exclude her from doing them.

What was it like growing up with autism, especially as women? There were, of course, challenges. Rachel was told that she would be severely limited in what she could do, and Gloria had to overcome social challenges and educational ones through the help of “therapy, plenty of social skills training” and “accommodations” at school needing extended time on tests and being in a room with little to no distractions. Being women raises similar concerns, due to the historical treatment of women and the need to prove themselves as being as good as, if not better than men, even on socialization and communication, many women with autism hide who they really are, which will limit their progress in life. Even though Claire Danes played Temple Grandin in the movie of the same name, almost all portrayals, or at least well-known portrayals, from Dustin Hoffman in “Rain Man”, to Keir Gilchrist in “Atypical” to Freddie Highmore in “The Good Doctor”, of autistic characters have been men.

Rachel wants to change the paradigm through “The Silence of Sylvia Kane” by creating a heroine who is autistic, suffering from Childhood Degenerative Disorder, a form that is hardly talked about, who has to survive being accused of witchcraft in the Victorian era, and if there would be a movie made about the story, she would love to play the heroine. As I’ve told her, if Lynda Carter, a former Miss America, can be Wonder Woman, she can play Sylvia Kane. When she went to a Writer’s Conference to showcase “Blubbingsworth’s Big Friendship” and “Sylvia Kane”, so many people were enthusiastic about seeing the latter become a published work, and it is Rachel’s dream to be a published mainstream author.

What do they want to say to women with autism? Generally, they both want to assert that no matter how tough things may be, with the condition, and no matter the obstacles, to “never give up”, to be proud of yourself, and to realize the amazing talent you have.

I left both interviews charmed at the presence of these two role models for the community, and I do wish that all readers of this article would feel charmed also.

Author: Merrick Egber (September 2018) It wouldn’t be fair to just have an interview with one parent for this year, so since it was my mother’s birthday coming up, on September 18^th, I decided to interview her for September’s blog article.

Debra Egber is a role model for women who want to succeed in a male-dominated field. Born in the middle of coal mining country, in Wilkes-Barre, Pennsylvania in 1956, graduating from Penn State University, she went from the daughter of locally popular furniture store owners to becoming an engineer, and after a short amount of time, a corporate executive for Westinghouse and then Northrup Grumman, when the latter acquired the former. Through her many stories of advancing through the ranks into retirement just last year, she is an important marker of the history of women in business.

With that background in mind, here’s my interview with her:

1Q – Merrick: What are your favorite stories about me growing up with my condition?

1A – Debra: You were amazing with puzzles when you were very young. Each day at your pre-kindergarten school, you would enjoy helping with clean-up by putting all the puzzles from that day’s activities back together. You would sit on the floor with piles of random multi puzzle pieces all around you. You never made a mistake and were very fast completing each puzzle from the random pile of pieces.

Change is very difficult for anyone and especially someone on the spectrum. I learned very early that getting you to change your mind and do something you didn’t want to do required more than “Because I said so …”. The successful way to get you to accept change was to provide you with a very detailed analysis regarding why the change was needed. This was not a challenge for me but actually fun since I have a technical background and respond best to logical thinking too.

Your uncle bought you a book for your birthday. He asked you if you liked it.  You responded, “How do I know since I haven’t read it yet?”  We all laughed!

2Q – Merrick: I was originally diagnosed with Pervasive Developmental Disorder (P.D.D.) … can you talk about the evolution of my diagnosis?

2A – Debra: You were born in 1986 and Dad and I began to immediately notice certain traits like fluttering hands and delayed motor skills. Experts told us that you had P.D.D., so we began our extensive journey with seeking out all types of resources and joining support groups. As you continued to develop, we questioned the diagnoses because you exhibited so many traits that seemed different than other P.D.D. children. You were reading before you were 5 years old, you could do complex puzzles without making a mistake, you were like a sponge in learning about subjects you liked, enjoyed attending and discussing movies and concerts with us and loved to be kissed and hugged. It wasn’t until 1994 when you were 8 years old that experts started telling us that you had Asperger’s. This diagnosis seemed to explain more of your traits, but we realized that even this diagnosis didn’t seem to explain all your traits. I realized that every child on the spectrum is an individual with unique traits of their diagnosis mixed with traits from their parents. No one diagnosis from experts would explain everything you can or cannot do but instead provided a starting point. Your potential was still an open path and not predetermined destiny.

3Q – Merrick: You’ve talked before, to me, about how events in your life have influenced you in your positive thoughts about the disabled … why?

3A – Debra: When I was very young, I had an older cousin that was referred to in those days as “slow” and I was told that he was born with a hole in his heart. During family functions, I would spend a great deal of time talking to him. He would tell me about his likes and dislikes, high school experiences and the cheerleader he wanted as a girlfriend. Through these interactions, I realized that all individuals, regardless of their disabilities, have the same dreams, wants and desires. My life has included many other experiences with family members and classmates that had many different types of disabilities. In each instinct, I learned to treat everyone with respect and cherish my time learning from them.

4Q – Merrick: How has my condition influenced your thinking?  How has it impacted your life?

4A -Debra: When you were in your teens, we had a lengthy conversation about autism. I remember explaining to you that folks refer to it as “Little Professor” since you become an expert in anything you like and are compelled to tell everyone honestly what you think.

I know now that “Little Professor” means so much more. You teach me every day how to be compassionate, understanding, resourceful, motivated, driven, creative and loving. Your ability to write songs and poetry is amazing and a true gift. You are a role model for us all and I’m so proud to be your Mom.

5Q – Merrick: What would you tell any mother if their son or daughter has been diagnosed with autism?

5A – Debra: Each autistic child is unique and what works best for one child might not work for your child.  Become knowledgeable about autism via the Foundation you work for (Els for Autism), other experts, numerous available resources on the internet/bookstores/library and reach out to other parents with children and adults with autism.  Contact a Special Needs Trust lawyer so you can decide whether or not this is something you need to set-up for your child.

Remember that your child will have autistic traits coupled with you and your partner’s traits.  Not everything that your child does is because they are autistic.  You will need to understand the differences, so you can react appropriately.

Be flexible, creative and open minded so you can leverage and adjust to your child’s needs throughout their life.  Understand what your child can and cannot accomplish today – tomorrow – someday in the future. For example, your motor skills are delayed but we have all learned how to leverage and adjust so you can succeed.  When we wanted to go on a family ski vacation, we discovered many ski resorts have programs for adults and children with all types of disabilities. We took you to Breckenridge, Colorado, and enrolled you in the Breckenridge Outdoor Education Center and it was an amazing experience. They adjusted their instruction and equipment to address your motor skill needs. I’ll never forget the look of accomplishment and pride on your face when you skied down the mountain. We discovered other programs, both out West and in the East, and you loved skiing in these programs. As a result, you were able to ski down beginner slopes (and a couple intermediate) with ease. Winter vacations became a special time for us as a family to ski and enjoy your accomplishment.

Merrick: Thanks mom!