Marcy Deutsch’s Story
As told by her mom, Robin Deutsch
Ed Note: Awe in Autism generally does not publish articles as long as this one; however, after reading Marcy’s story as her mom tells it, we realized that it touches on many issues faced by children growing up with autism, and by their parents and siblings. We encourage you to read it here, or print it and take it with you to a quiet place. It is a story about challenges and frustration, pain and anger … but most of all, it is a story about hope.
Marcy was born on Feb. 19, 1983 by C-section. It was a good thing, too, because the cord was wrapped around her neck. From early on Marcy was different. As an infant she never really liked to cuddle, and would usually stiffen up. As she got older there were always delays in her development, but not enough to really worry the doctors. She was kicked out of three pre-schools because not only could she not socialize with other children, she would usually just scream if another child got too close to her or if things changed and were different than she was used to.
I tried for years to convince the doctors that Marcy might be autistic, but because she could say a few words when asked questions, they always ruled it out. At the fourth pre-school, one of the teachers used to work with autistic children — and with her help, the doctor finally decided to send Marcy for testing at CDRC in Portland, Oregon. She was tested for I.Q., fine motor skills, and everything in between. Finally, a panel of doctors told my husband and me that Marcy had moderate high functioning autism. They went on to say that she would never go to college, never make friends, never drive a car … and that when she got older, she would have to be put away some place.
This was indeed devastating news. Luckily neither of us believed it. We knew that Marcy was so much more than a diagnosis, and we worked with her daily to try to help her.
“It was then that a miracle happened…”
When Marcy was seven, she still had very little language. She was also fixating on the movie Lady and the Tramp. While she could repeat everything in the movie, still she would answer questions with only one or two words. One day while in the pet store, Marcy started screaming out at the top of her lungs, “Lady, Lady!” She was pointing to a black lab mix that looked nothing like the dog in the movie. We already had four dogs at home that Marcy never even looked at or seemed to notice, but she kept insisting that this was Lady.
Figuring “What’s one more dog?” I bought “Lady” for Marcy; she was instantly attached. The next day, the school bus came to pick her up. Normally she would walk to the back of the bus, ignoring all the kids, even though they would always say “hi” to her. On other days, if anyone sat down next to her she would start screaming. It was then that a miracle happened. Instead of going all the way to the back of the bus, Marcy sat down next to one little girl in the front –and said her very first sentence: “Marcy got dog, Lady”! (She always referred to herself in the third person.) The bus driver almost fainted. After she dropped the kids off at school she came to see me to tell me what happened. I was just as shocked as the bus driver.
Marcy started talking more and more after that. Lady was very patient with her, and very gentle. Marcy would put her face right into Lady’s, and Lady just quietly sat there while she did this. Because of this, Marcy started making more and more eye contact with our family.
“They would include her in group times, but otherwise not much was done.”
From the time Marcy could sit up without help she was in front of the computer. It was hers and her dad’s special time. By the time she was 20 months old she knew her alphabet. By the time she was two-and-a-half, she could count to 100. At age three she was starting to read. When she entered kindergarten she was reading at a third grade level and doing math at the same level. Unfortunately because she was in special ed, and nobody the teachers had ever worked with before was at this level, they pretty much just left her alone. They would include her in group times, but otherwise not much was done.
At home, our family — including Marcy’s baby brother, Scott — would play games. One that Marcy liked was the “Let’s redecorate” game. Marcy would always get upset and start screaming if something were moved from where it normally was. But in this game, Marcy was the one who got to decide where things would go. It wasn’t unusual to have her move the TV behind the sofa, or put the dining room table in the middle of the living room. But it was her decision, and because of this she started relaxing more when things were moved.
Whenever I had Marcy in the care, on the way home I always took a different route; this game became known as the exploring game, when I would make up different stories about adventures. Any time Marcy would go to the store, or get shoes or clothing, or even go to the doctor, I would make up games — with Scott’s help – to show Marcy what would happen at each place. Because of this, Marcy was more likely to act “normally” when going to new places. Scott and I, and sometimes my husband, would also show Marcy the correct way to meet a person, what to do if there was a problem, and how not to act.
“She was doing very well — until she entered sixth grade.”
Because Marcy was afraid of the water, I enrolled her in swim lessons. (Thankfully, I found a teacher whose son was autistic!) Because she was afraid of falling, I put her into gymnastics. (This time I found a teacher whose husband worked with autistic kids) … and because she was afraid of heights, I got her into horseback riding. (That almost backfired, because after that she wanted her own horse. When I asked where she would keep it, she replied, “I would keep it in Scott’s room. It would be much neater than him.”)
By the time Marcy was in the fourth grade she was totally mainstreamed. She was doing very well — until she entered sixth grade. One day after school, she and a few of her friends, along with Scott, went to play at the school. Afternoon sports were taking place, so there were several teachers and staff there. At the playground, Marcy met a boy who she liked a lot, because he told her he was her friend. While playing hide-and-seek, Marcy went to hide and her new friend followed her. When they were behind the bushes, he pushed her to the ground and tried to rape her. He penetrated her with his fingers, both vaginally and anally. She kept telling him “I can’t do that because I have to wait until I’m 21”… but he wouldn’t stop. Scott looked on helplessly as this boy tried to rape his sister. The boy was 14, and was large for his age. Scott had no clue what to do. Marcy fought and finally freed herself. She ran home with Scott close behind her.
Ed. Note: Because of the sensitive nature of this episode, follow-up details have been omitted from the original story.
“Her life became a living hell.”
When Marcy entered middle school, her life became a living hell. Daily, she was made fun of, kicked, punched, pushed, spit on, thrown in lockers — and even had gum put in her hair. And almost daily, I went in to the school demanding that they do something or complaining about what happened. I made certain to document every episode. I even took pictures of the bruises and gum in her hair – and I called a meeting to discuss what was going on with my daughter. The teachers, principal and head of special education took charge of the meeting instead — promising that they would look after Marcy.
The next day Marcy came home with a cut under her eye where a wadded-up paper wrapped tightly in tape was thrown at her. By that time, Marcy had started to develop severe anxiety, and had a small nervous breakdown.
This was the final straw. My husband and I went back to the school for another meeting — this time, with an advocate. Not just any advocate either, but one who helped write ADA. We handed out a list of every single violation against our daughter and everything that had happened to her. I read each one aloud while our advocate mentioned lawsuit with each violation. The next day the school called and told me we’d get everything we asked for, as long as we didn’t bring the advocate along.
Marcy’s hidden talent…
We decided to put Marcy in a private school for kids with disabilities. The first year, she blossomed. The classes were smaller, the teachers were more understanding and would help her through any problem she had. Most of all nobody bullied her. She loved it there.
It was there that Marcy’s hidden talent was discovered. In a schoolwide art project, all the kids were asked to draw their favorite pet or animal. Marcy decided to draw her pet macaw, Tiny. Marcy would never draw before because in her mind it wasn’t perfect. The school ended up calling me because they had never seen and 11 year old draw like Marcy did. We looked in to art lessons and found a teacher who would work with an autistic child. More and more, Marcy’s talents came out.
“He didn’t like Marcy and told her he was going to kill her…”
The following year, the school started to accept kids with very serious problems. One boy in particular was not only aggressive, but violent and dangerous as well. He stabbed one of the teachers with a pair of scissors and threw a desk down a flight of stairs at another. He didn’t like Marcy and told her he was going to kill her.
Once again Marcy had a breakdown and we immediately withdrew her and put her in an alternative school. She had nothing in common with the teenage moms or their kids. She didn’t care anything about fashion or TV shows. She did not fit in at all, and she was miserable and starting to show more autistic behaviors. The district ended up putting her in an outpatient treatment school. While they would do fun things, there was a strict rule about making friends there. They didn’t want the kids to make friends there at all. Marcy struggled, and went back to rocking and making funny movements with her hands. Her art, however, got her through it all.
“Flying gave her freedom and a calmness she normally didn’t feel…”
Marcy’s own rendering of the airplane in which she learned to fly.
In 2000, Marcy and her family moved to Yelm, Washington. In her new school, Marcy was nervous at first, but for the first time in her life, she wasn’t bullied. She made friends who accepted her for who she was. Marcy ended up graduating with honors. She went to Clover Park College right after high school, where she began learning to fly a plane. Like her art, flying gave her freedom and a calmness she normally didn’t feel. Marcy began to stress out about soloing. She was anxious about flying a plane without anyone else there.
She ended up quitting Clover Park and went to Pierce College instead, where her brother Scott was enrolled. Marcy and Scott both decided to take a class on “weather.” For their first test, the teacher announced that the high grade was usually 50. He also said if anyone got a passing grade they’d get an A in the class. Marcy got an 87 — and she was very upset because it wasn’t 100. She even begged the teacher to let her do something for extra credit. Each test after that she did end up getting 100 or better. (Her brother always got the second highest grade in the class. For that first test he ended up with a 60. The next highest after that was a 42.)
Marcy earned a general two-year degree, and she graduated with honors.
Pseudo-seizures and schizoaffective disorder…
After college, because of the uncertainty and lack of a daily schedule, Marcy had another breakdown of sorts. She started having seizures. She went for testing, and was hooked up to monitors 24/7 for five days. The seizures were actually “pseudo-seizures.” Once that stopped, Marcy started showing more and more signs of schizophrenia. Later that year she was officially diagnosed with schizoaffective disorder.
Marcy still continued with her art, and that helped her through some tough times. She also wanted to join Toastmasters. It was there that she started to learn to talk in front of an audience. Because of this, Marcy started speaking at autism conferences about what it was like growing up autistic and the challenges she had to face.
Overcoming the challenges…
Today, Marcy’s work has appeared in Drawing Autism, by Jill Mullin, and most recently, Artism, The Art of Autism, by Debra Hosseini. She has a website as well, where she sells her art images on various items (www.crittersonthings.com).
Marcy is also helping her brother develop his app for smart phones and tablets that teaches individuals with special needs both life and social skills. The game is called Life Skills Winner.
Marcy continues to draw and has over 400 different images. She sells both retail and wholesale to different stores in our area. Her favorite times are when there is an autism conference or holiday bazaar where she can sell her items. She also loves talking to people, and now, because of that very special dog, she can make eye contact. When most people meet her for the first time they don’t even know she is autistic. Marcy has come a far way from how she used to be to where she is now. In her speeches she always tells people that she couldn’t have done any of that if it wasn’t for her family. She knew that her family loved her and supported her and most importantly, believed in her. They taught her she could do anything and be anyone … all she had to do was believe in herself.
Ed. Note: A fundamental belief of Awe in Autism’s cofounders is that hope and encouragement are vital and necessary components of raising any child, and are especially important for children with special needs. We realize that not every child or adult on the autism spectrum will achieve at high levels in the “neurotypical” sense – but we believe that every person has qualities of great worth, and has the potential to make valuable contributions to our world, if we will listen and care.