As someone with Autism who has gotten this far in life, when I blog, I like to focus on the positive reasons I have gotten this far. I wouldn’t be here at all if it wasn’t for determination, drive, perseverance, and some great people! However, this is a tough one for me to write about because I could not emphasis enough how those things came into play. I would absolutely, positively not be where I am if any of those things were not in place. I believe that is why I preach so hard to people with Autism that they CAN make it no matter what. First of all, you have to surround yourself with good people and take advantage of anyone you see who can help move you forward. The other three I listed, determination, drive, and perseverance come from within the individual. There are some days that I feel that I have run a marathon, but it has to be done. I don’t have a choice. Well, I guess I do, but not if I want to be successful.
Something that people with Autism have to realize is that hard work is not an option. We have to accept, very young, that to get through a normal neurotypical environment and keep up with the world around us, we have to absolutely work harder than most of our neurotypical peers. We have to self regulate all day which takes an amazing amount of energy and we have to spend more time learning and doing what is expected. If people on the spectrum go into their day just knowing that the day is going to be filled with hard work, they will be fine. If hard work is avoided every time it rears its head, then it is just going to be harder going into whatever it is they have to do. One has to realize, the hard work is going to be there, so, either go into it willingly or go in kicking and screaming. Either way, it’s going to happen. The only way around is not doing it. That really, hopefully, will not be the option. With all that said, there have been associations in my life that have held me back. Big associations that I was not able to let go of. People with Autism can make associations that make no sense, at all. A woman with a red shirt could have called them a name therefore, all women with red shirts should be avoided.
When I was 11, I was a favorite to win, in swimming. I traveled. I went all over the country, swimming in meets and I was normally in the fastest heat. The day of my 11th birthday, I was in Pittsburgh at a Junior Olympic meet. It was a biggie and I was favored to do very well. My mom and dad took me to a restaurant to celebrate my birthday It was amazing! It was one of those real fancy places. The restaurant announced I was there and who I was and the Maitre d' danced with me, in front of everyone who was eating. It was such a special day and I felt like a princess. My dad was my everything. That was such a special moment with him, as well. Three months later when I was at swim practice, he died. At 11 years old, with Autism, I made the association that because I was winning and doing so well, my dad died.
The next meet I swam at, I won. They called my name and everyone was like go up and get your medal. Go up to the podium. I refused and I never won again. I eventually quit swimming because doing well in swimming was associated with my dad’s death.. I couldn’t do it.
Working at IDEA House has been one of the biggest blessings to me. Working through a brick wall to get to the other side is hard. Having to realize that I sabotage when things are going well because I’m afraid to succeed, was a hard one for me. I kind of knew it, but I hadn’t reached the point of being able to really, really get to the other side of that and allow myself to win again. During my high school graduation, a close aunt died and no one from my family could come because the funeral was at the same time as my graduation. I also got my college diploma, but refused to go to the ceremony. There have been other instances, but through the years, I started to gradually allow myself to have small successes. I won a lot of awards in journalism. I wrote a book. I had some great jobs, but nothing has helped me get to other side of that association of my dad’s death and success like IDEA House.
I have gone from office manager to assistant director. I have gone from not really able to speak to people to speaking in meetings and teaching social studies. I’m pretty proud of how far I have come, in these last years.
I have heard student after student explain the bullying situations they have had in public schools, from peers and teachers. I have witnessed the association of being treated badly and school. I have watched the kids break through those huge barriers and start to trust again at IDEA House. I have watched them smile and succeed, again.
In a safe, trusted learning environment, like IDEA House, kids with Autism and adults, like me, with Autism can have permission to grow past those negative associations they have made in the past. Thank you IDEA House and Angi Shumate, friend and fellow brick breaker for helping me get to the other side.
So I’m driving down the road and a song by Journey comes on the radio. Suddenly, I am back in high school. As I am belting out the words to “Don’t Stop Believin’” I am, for just a moment, back in love with my high school boyfriend, on my way to the Friday night football game, in my cheerleading uniform with the biggest hair on the block. All those sensations rush in and last for a nanosecond, but they come in so strong!
I look in the mirror and I am once again my current self. I am a middle-aged mother of three with a job, a mortgage, more wrinkles that I am happy about, and I am fairly certain the world is grateful I am not wearing the old uniform.
I have these experiences frequently. The smell of chlorine immediately takes me back to summer vacations by the pool. The smell of spaghetti sauces provides me a moment’s visitation to my grandma’s Italian kitchen. Certain aftershave scents bring about an image of my dad, just the way he looked when I was a child. These are all very pleasant associations. They are brief, I recognize them for what they are, and I simply enjoy those tiny trips down memory lane.
For students with Autism, associations can take on an entirely different meaning. Because a person with ASD can have such heightened sensory input, many more associations are created. It does not take such a large sound, scent, sight, or tactile prompt to create that feeling of “flashback.” Because a person with ASD experiences everything with a greater sensory experience, sorting through which stimulus created the association can be very difficult.
Sometimes those associations can be confused. If a child fell down and scraped his knee riding a blue bike, it would make sense to most of us that he associate the bike with the injury. However, the possibility exists that a wrong association was created in that moment. Suddenly the child may exhibit a fear of everything blue (reminding him of the bike.) He may become terrified at the sound of a lawn mower (because the neighbor was cutting the grass down the street when he fell.) Cheerios may be added to the list of “banned from the diet” foods, (he had them for breakfast that day.) It takes some real detective work to decipher the details of another person’s associations.
As Ann mentioned, students who come to IDEA House often have a large number of negative associations in response to previously unsuccessful school experiences. For one student, the word “school” creates huge anxiety within him. He will even say, “No school! IDEA House!” His is an easy association to accommodate. For other students, their fears are not as easy to identify or alleviate.