Mark Macluskie: Autism is Not My Identity

Mark Macluskie, 19, is a math whiz and winner of a full-ride Flinn Scholarship to Arizona State University. Mark just started there this fall. He is majoring in mechanical engineering with double minors in electrical engineering and mathematics.

Mark’s prior activities and accomplishments include: associates degree in science, student ambassador at Paradise Valley Community College, President’s Volunteer Service Award, volunteering at the Autism Society of Greater Phoenix, state champion for robotics, Team Delta robotics referee, and host of “The Tech Team.”

Autism Diagnosis

The road to college was not always an easy one for Mark, and he’s come a long way to get where he is. When he was a baby, he had been ahead of developmental milestones, walking at 7 months and using two-word combinations by 10 months of age. But by the time he was 14 months old, he had lost his use of language, and started having tantrums and banging his head. He was diagnosed with autism at age 3, and his parents were told that he would one day have to be institutionalized.

Mark’s mother, Cynthia, was unfamiliar with the word autism at the time of Mark’s diagnosis in 1999. So she devoured every piece of research and anecdotal evidence about autism that she could find, hoping to find some answers. Cynthia then set out to try anything and everything she could do to help her son. She even quit her full-time job in human resources to devote all of her time to Mark. Cynthia had been the primary breadwinner; but Mark’s father, Kevin, went back to school in order to build his career as an engineer so Cynthia could afford to stay at home. In the meantime, they had to take out a $100,000 second mortgage on their house.

The family radically changed their lifestyle and environment. They completely cut all gluten, dairy, soy, preservatives, and dyes out of their diet. At that time, Whole Foods was not yet available in their area, so they shopped in kosher Jewish stores and Asian markets to find suitable products. They rid their home of all chemicals, allergens, and any possible triggers, switching to 100 percent cotton clothing and organic sheets. Carpeting was ripped out, clutter was removed, and cleaning supplies were tossed in favor of vinegar and baking soda. Their efforts definitely seemed to help, because Mark stopped the tantrums and headbanging, and slowly began speaking again.

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Cynthia pulled Mark out of a developmental preschool where she noticed that he was only getting worse and quickly losing skills. She began homeschooling him, trying different curricula and keeping those that worked while tossing any they didn’t like. Her own behavioral therapies were supplemented with speech and occupational therapy provided by the state. By the time Mark turned 8, his speech and behavior were on par with peers, but his social skills remained classically autistic.

Cynthia set out to address his social delays, using the television as a teaching tool for social thinking and social cognition therapy. Mother and son would sit together on the couch, watching shows like “Leave It to Beaver” and “Little House on the Prairie.” Cynthia would ask Mark to make guesses, like “What do you think is going to happen next?” and “What do you think that person is feeling right now?” She learned that these exercises are important for children with autism, who often fail to pick up on social cues from others.

Cynthia decided to keep homeschooling Mark, rather than trying to “socialize” him in school, having concluded that traditional school wouldn’t sufficiently address his weaknesses or recognize his strengths. Even special education teachers often have a difficult time because developmental disorders are such a broad spectrum. At one end of the spectrum, there are individuals who are not going to be able to go to college or go into high-level careers, and at the other end there are highly capable individuals.

That’s why the personalized attention of homeschooling can be beneficial for children, like Mark, who have special needs. “Homeschooling is very individual, whereas in public school there wouldn’t be a lot of chances for me to succeed,” Mark told the Arizona Republic. “Arizona has a lot of freedom of choice when it comes to education,” said Mark. I would hope that most people ultimately pick what works best for them, just like homeschooling worked for me.”

By homeschooling Mark with a customized curriculum, his mom created the perfect environment to help him pursue his interests. “The nice thing about homeschooling is that you can find whatever curriculum is great for your kid,” explained Cynthia in an Arizona Republic interview. “It really allowed Mark to focus on his extracurriculars and what he was passionate about.”

By age 7, Mark was an avid pianist. At 13, after receiving an electronic drum set for Christmas, he switched to drumming. A music lover, Mark cites Spotify as being his most used app. He can often be found listening to classic rock, heavy metal, and punk rock tunes by Rush, Iron Maiden, the Rolling Stones, and the Ramones.

Mark also developed an aptitude for math and technology, building robots and writing computer code. Cynthia formed a robotics club for Mark to practice socializing while doing something that he was passionate about. He competed in his first Vex Robotics World Championship at age 13. At 16 years old, Mark co-hosted a weekly Internet radio show called “The Tech Team,” which was the No. 1 radio program on the KidStar network, garnering more than 30,000 listeners every week.

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Steven’s Law

When Mark was 8 years old, despite some residual symptoms, Dr. Raun Melmed, the autism doctor who initially diagnosed Mark, changed his diagnosis to high-functioning autism. With this new diagnosis, Mark was taken off of state services, despite lingering dyslexia and dysgraphia, which impacted his reading and writing.

By the time Mark reached 11, research indicated that Mark no longer met the criteria for autism. It was at this time that Mark and his mother shifted their focus from working solely on Mark to working with the local community on autism awareness.

In 2008, Steven’s Law, an insurance bill that required many private insurers to begin covering the costs of services for individuals with autism under the age of 16, was introduced before the Senate Health Committee at the Arizona Legislature.

Mark and his mother spent months working to get the bill passed, collaborating with other parents of autistic children to lobby Arizona’s representatives. Cynthia and Mark both testified in front of the Senate Health Committee. The bill unanimously passed out of committee and was approved by the full Legislature, taking effect July 1, 2009.

When Mark first received his diagnosis, only one in 500 children were diagnosed with autism. Today, approximately one in 64 children are diagnosed with a spectrum of disorders classified under the autism umbrella. The differing levels of severity and the factors influencing them make treating each case unique and impossible to predict.

“Autism is not my identity,” Mark insists. “I don’t mind people being curious or asking questions, but it’s never been how I want people to define me.” According to Zoe Gross, director of operations at ASAN in Washington, D.C., “Autism is about how an autistic person experiences the world — not how we appear to others.”

Temple Grandin

Mark’s experience parallels that of Temple Grandin, one of the world’s most well known and accomplished adults who was born with autism. Through the unending efforts of her mother, aunt, nanny, educators, other mentors, and herself, she was able to make amazing strides in her life, education, and career. In other words, she never allowed autism to define her. After spending a summer on a ranch in Arizona, she was motivated to pursue a career as an animal scientist and livestock equipment designer.

Dr. Grandin, now 68, has a Ph.D. in animal science from the University of Illinois and is a professor of livestock behavior and welfare at Colorado State University. She is the author of six books, including the national bestseller Thinking in Pictures. Her book, The Way I See It: A Personal Look at Autism and Asperger’s, offers a unique perspective on autism, along with numerous concrete suggestions for handling different kinds of behavior. Dr. Grandin is a past member of the board of directors of the Autism Society of America. She lectures to parents, caregivers, and educators throughout the U.S. about her experiences. She was honored in Time magazine’s 2010 “The 100 Most Influential People in the World.” The HBO movie based on her life, starring Claire Danes, received seven Emmy Awards.

In October 2012, Dr. Temple Grandin wrote the following opinion piece titled “Autism Is Not My Identity” on the website, TakePart, a digital magazine:

I live in two worlds.

One day I am visiting the engineering campus of a university, and the next day I am at an autism conference. What I have learned from this is that many technical and creative people are often undiagnosed autism spectrum, Asperger, dyslexia, or have learning problems. Many of these successful individuals are aged 40 and older. They are in good jobs, and they have succeeded because their sense of identity is as a statistician, artist, computer programmer, musician, engineer or journalist.

This is similar to me. I am a scientist and college professor first and a person with autism second. Autism is an important part of me, and I do not want to change, but my career is my identity, not autism.

I get concerned when young kids come up to me and all they want to talk about is “their autism.” I would rather talk about their interest in animals, science, or history. They are becoming their label.

Often teachers have a harder time working with a brilliant child with Asperger’s because they have no training in the complex subjects the child is interested in. What worries me is that I see too many smart children becoming their label and not succeeding. Then I travel to a major tech company and I see all the old people with Asperger’s, ADHD, or dyslexia holding good jobs.

We need to tap into the vast pool of retired people to get the kids who are quirky and different turned on to their gifts. Retired artists, professors, engineers, and other professionals could mentor these students.

There are a lot of free classes online in all kinds of fields. Some of the best websites are Khan Academy, Coursera, Udacity, MOOC and free classes at MIT and Stanford. The local community college has lots of classes in computer-aided drawing, auto mechanics, welding, electrician, and many other fields. There are some good free drawing programs online, such as Sketchup.

This was an excerpt; click here to read the original. Temple Grandin and Mark Macluskie are both great role models who didn’t let autism become their identity!


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