Don’t Underestimate Me!

This article was contributed by Leica Anzaldo, Training Manager for the Autism Society of North Carolina.

Danny track“Good morning everyone, I’m Danny. I want to tell all of you thank you for helping me and talking to me even when you knew I could not find the words to talk back. Having autism is very hard and lonely. It’s like being trapped in your own head. You understand what is going on but can’t participate. I have had a wonderful time at Lakeshore Middle because of all of you. I’m sure none of you will truly know how much you have affected my life. I hope to see all of you at Lake Norman High School.

Have a great summer!”

This was the speech given during 8th grade graduation by Danny, the son of my neighbors and friends, Sue and Rich. Many of the kids at Danny’s school didn’t even know he could talk and certainly didn’t know that he was so aware of all of them. Needless to say, there wasn’t a dry eye in the place, and many new friends were made as a result.

Danny and his family regularly inspire me to continue my work in the field of autism but also teach me things I never would have considered if I didn’t have them in my life. I am truly lucky.

Danny was diagnosed as “severely autistic” when he was almost 2 in New Jersey, where his family was living at the time. But Rich and Sue knew something was wrong much earlier than that. They remember how Danny would lie quietly on the floor for hours, pushing one of his trains around the corner of a wall until it would disappear. Then he would peek around that corner with a look of amazement that the train was still there. These rigid patterns of play were consuming. Not only that, Danny wasn’t seeking out the attention of his parents like most 1- to 2-year-olds do fairly constantly. Danny was beginning to use some words, but they were mostly from songs. He would never ask for anything – even with body language – nor would he make eye contact with others. He also had extreme bouts of crying when in crowds or when exposed to smells such as perfume. These are all very common early experiences for children with autism.

The family moved to New York, where Applied Behavioral Analysis (ABA) services for Danny were immediately available. He began receiving ABA therapy for 25 hours a week in their home, plus physical, speech, and occupational therapies from ages 2 to 4. He was then enrolled in a school for kids with autism. The school had a curriculum based on ABA interventions and very low student-teacher ratios, and Danny attended until he was 12. This intensive therapy provided the platform for learning that Danny needed, but this isn’t the only contributing factor to Danny’s success. His family and their approach to his autism were and are key to moving Danny forward.

Sue and Rich never let Danny’s autism get in the way of trying new things, pushing him outside his comfort zone and treating him much like their other two children. They say it was hard because he was fairly nonverbal and they were never sure how much Danny was understanding. However, it was so important at an early age not to allow Danny to develop rigid patterns of play or behavior. For example, he was very focused on Thomas the Tank Engine as a child and made elaborate tracks throughout the house but didn’t want others to play with “his” track. Sue and Rich would walk by and change a little bit of the track or take a piece away, getting Danny’s attention. They would then turn his play into a social game of chase or hide the track, waiting for Danny to vocalize “where is it.” Then they would show him the piece and encourage him with “come and get it”; a game of chase and tickling would ensue.

Now mind you, Danny never responded with aggression, so this may be very different from how other children respond. But even during my own observations, Danny uses the most language when he is pushed to the brink of frustration, and this is when his language is clearest and most precise. Rich teasingly puts Danny in a bear hug and asks him a bunch of questions, not letting go until he answered, but in a playful and silly way. It becomes a game, with Danny saying “no, no, no” but with a smirk on his face.

They also exposed Danny to new experiences early, such as going to the dentist at a young age and flying on a plane at age 4. They learned and adjusted based on Danny’s response. Family members always ask why they can’t just stay home for school breaks instead of always making travel plans, to which they answer: Change is important; if we don’t change it up, Danny will stay in his room, isolated, and it will be harder to try new things in the future. It isn’t always easy and is met with resistance, but he participates and usually enjoys whatever has been planned.

Small accommodations are also really important, such as having headphones and music available for Danny when he has to wait, is in a crowd or noisy environment; having access to a movie player because movies are a big part of Danny’s life and something he looks forward to at the end of the day to unwind; boarding the plane last and exiting first so he isn’t pushing everyone out of the way; and most importantly, making sure the people around Danny know he has autism and what that means. They have always been very upfront with people in the community that Danny has autism, sometimes dressing him in shirts that say “got autism.” This helps others to not make assumptions about him based on his behavior but instead ask questions. For example, on a plane ride, Sue said loudly to the person in front of her as they were deplaning that she was sorry if Danny had been kicking his seat, but he has autism and doesn’t always understand how what he does impacts others. She said this so the other people on the plane knew, too, as Danny was making loud noises and being a bit impatient. It isn’t always easy to say that your child has autism, but Rich and Sue feel very strongly that the more people know, the better. Raising awareness and cultivating compassion in others is a huge part of their efforts for Danny. They have always gone to every classroom Danny has attended to make sure his teachers and classmates know who he is, that he has autism, and what that means for him.

Danny moved to North Carolina when he was 12 and began middle school with his sister Mickale. Mickale is also a huge advocate for Danny, making sure all her peers know Danny and understand autism. She is a beautiful person inside and out, whose relationship with her brother has affected so many other students in the area where we live. She accepts Danny’s big bear hugs in the hallway and never seems to be embarrassed by Danny’s autism, instead embracing it as part of who he is. Danny really started to flourish while in middle school. He was in a self-contained resource room except during chorus. They also tried mainstreaming for gym, but the sensory input was too much. (He would hold the locker room door closed because the other students were so loud and he wanted to get down the hall before them.) Sue also signed Danny up for the swim team and cross country, making sure all the coaches and team members knew who Danny was and that he had autism. I witnessed Danny at both and was so moved by the fact that even though Danny wasn’t the fastest nor did he always understand the expectations of each event, every person in that pool or on that course was cheering him on until he finished – even the other team.

This year, Danny started high school at Lake Norman High. He is fully included, and his parents were really nervous, but Sue met with Danny’s teachers and school staff to determine the best option for him. They assured her that he could do it and that they would be there to support him along the way. To prepare, Danny’s parents took him to check out the school layout and walk around the school preparing him visually for what was to come. Sue also downloaded a map of the school and highlighted and numbered all the rooms where Danny would go. She made a schedule for Danny that he keeps inside the front cover of a notebook with his classes, teachers, and the numbers that correspond with the map. She made a cheat sheet for inside the back cover that includes the smaller steps, such as when to go to his locker and what to do once he gets there: open, put cross-country bag in locker, close and lock, then go to homeroom, etc. She also showed him once how to unlock his locker and then had him do it four times to avoid this frustration in the future that she knew would throw off his day.

Most importantly, once again, she has made sure that people in the school know Danny and understand autism. He is running cross country at the high school level now, and practice began well before school started. Mickale also runs and has made sure the other runners look out for Danny at school and talk to him. Sue and Rich have had several students approach them and say how cool Danny is and that they “have his back.” And Danny feels like such a part of the team that after practice one night all the kids jumped in the lake and Danny was right there with them. Sue couldn’t believe it! Sue, Rich, and the rest of the family have done an incredible job making a community for Danny. Every neighbor on our street is comfortable around Danny, talking to him and inviting him to parties, boat rides, and other activities in which all the other kids are included.

I hope you don’t find this too idealistic, but I really wanted to show how true “inclusion” can look for people with autism, even if they don’t have services. Danny still has autism. A lot of his talk is movie talk, he eats the same thing almost every night (though he makes it himself), and he still doesn’t have what we would identify as a group of friends. But Danny is a genuinely happy teen who is treated by others as one of the guys. He surprises me every time we are together, and I cherish the fact that my own children are developing such compassion just by having this family in their lives.

Leica Anzaldo can be contacted at 704-894-9678, ext. 1603, or lanzaldo@autismsociety-nc.org.

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