This is an article I wrote for Huff Post a few years ago. I was struggling with the decision to “allow” my adult son with Autism to put on his favorite costume and go door to door on Halloween night. I share this every year. I know I’m not the only one who has to make this decision. Being a caregiver to an adult on the Spectrum isn’t easy. This is my take on it. I’d love to know yours. Comment below or join the discussion in our Facebook group.
Can I be transparent with you? It took me over a week to write this article. I couldn’t find the words to express how I felt about this situation. I’m sure you feel the same way, too when Oct 31st arrives every year.
Should I or shouldn’t I?
Let me give you a little background on my son. Quon is 27 years old, over 6 feet tall and diagnosed with Autism Spectrum Disorder. He also has some other cognitive and intellectual challenges. He entertains himself by streaming his favorite shows on his tablet. There’s a mixture of superhero movies, Sesame Street and porn.
He loves wearing his favorite costume (for the past 5 years it’s been, Burger King). He loves getting candy, separating it by type and eating them until he’s drunk on sugar. He loves Halloween…period.
That’s why the decision to allow him to participate or not is difficult. Below, you will read the 3 points I had to consider before I settled on the best answer for me and my family. Hopefully, this will help you decide for your family.
He should go out and enjoy the things he likes without shame or judgment.
Have you ever been told to act your age? I can’t even count the numbers of times someone has said or implied that same sentiment to me. I’m 44 and people tell me that I look, dress and act much younger than I am. I’ve often thought to myself, “Who put these people in charge of how someone is supposed to act or behave? Who developed this behavior baseline?”
I can think of 3 childish things I enjoy doing. 1. I love coloring books and crayons. I have actual books and coloring apps on my phone; 2. I play my music loudly and sing off-key in my car. Tell me that some of you don’t do the same thing, too; 3. When I feel like playing “dress up,” I go to the mall and try on clothing I have no intention of buying. The child in me loves these things and the adult in me doesn’t care.
Why can’t I let my son express his love for superheroes, costumes and dressing up in his own way, even if it seems childlike? This brings me to my second point.
I don’t always want to be an advocate when I leave the house.
People sux. Okay, maybe not all people but some people do. They have nothing better to do than to judge you on how you decide to live your life.
Quon had the worst meltdowns when we were younger. Full-on screaming and slamming his head onto the floor if we were out longer than 10 minutes. It was stressful for him and me. The worst part was the stares and comments from other parents. They just assumed my child was having a tantrum, and that I just needed to be a better parent. I wanted to hold up a sign that said, “My child has autism. Mind your own business.”
Seriously, there are times when I have the strength to educate on things like meltdowns, stimming and scripting. And there are times I just don’t. I would like to take my son out to get candy on Halloween without handing out “autism cards,” or explaining why this “trick-or-treater” is six feet tall with a full beard. I wish we lived in a world where he could just…be.
As a parent, I should guide him to more age-appropriate activities.
It has always been my desire that Quon can live as independently as possible, and be happy. That’s why I invested years in therapy and life-skills training. At what point do we stop training?
My neurotypical daughter is in college. She is there because she is gaining the proper classes for the certification she needs to get a license for her career. That’s the only reason she’s there. I’ve “raised” her as much as a parent can.
Why should it be any different for my son? At 27, he is “raised.” He is not bothered with your idea of social norms, so why should I be? He’s as independent as he is going to be and…happy.
My final thoughts.
So what did I decide to do? I ordered him a new costume. We are going to go knocking on doors in my neighborhood and introduce Quon to my neighbors. He will also attend a dance that his school provides for all the graduates. Lastly, we are going to a free community Halloween photoshoot I arranged for my autistic families.
There is no right or wrong answer. I decided to do a combination of things to make this year’s “holiday” special for him. What will you do this Halloween for your adult with autism?
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