I met Zachary about 6 years ago, when his mom called me to tutor him in writing. Tutoring worked out well, so his mom and I designed a homeschooling program, and Zac and I worked together at libraries all over town for a few years. Then, we got sick of hanging out with each other all day, and decided to find him some fresh tutors, who he worked with a few years. Nowadays, we are friends, and we hang out about once a week, talk about his writing, and anything else that interests us. Recently, Zac let me interview him about his life.
I am so proud of Zac’s story, and the adult that he is growing up to be. Honestly, Zac works harder at his entire day than a lot people do at their job. It is not easy for him to stay organized, communicate what he needs to say, and to get what he wants in general.
My favorite part about our educational journey together has been learning about Zac’s sense of humor. In the beginning, we didn’t joke, and I didn’t know anything about his internal life, but after about a year, he started voicing observations and opinions which revealed his perceptive mind, and his wonderful mix of potty humor and slightly dry sarcasm. Since I am somewhat sarcastic myself (my friends are rolling their eyes right now), this new medium for interacting really improved our friendship.
This interview was even more fun than I expected it be because it started Zac and I down memory lane for a week or two. Since Zac is not a fan of surprising probing questions, I emailed him a list of stuff I was going to ask him about a week ahead of time. Then we met and talked about his responses.
We had a great conversation about all his collections over the years such as string, car parts, toy planes, and, of course, pens. Zac had, according to him, “enough pens to last a lifetime..well… that was back in 1999…maybe they would last a lifetime now that we have iphones and nobody even uses pens anymore…”! We chuckled over our trip to Washington DC, which was the setting for one of the few times I lost my temper with him (he wouldn’t stop munching potato chips and crinkling the bag at 2am in the dark!)
We also had an interesting conversation about some habits that Zac said he’s glad he doesn’t do anymore, like twisting his hair, and playing with a mole on his neck. When he told me this, I asked him why he was glad, and he shrugged and said he thought he looked like a weirdo. We both love that word, so I grinned, but pursued the topic:
Sylvia: Why do you think you did that stuff more in the past?
Zac: I don’t know…Because I was anxious….and it was just a habit.
Sylvia: When did you decide that you looked like a weirdo when you did that stuff?
Zac: I don’t know
Sylvia: …Well I don’t care if you do it. I mean, I twist my hair and wiggle my feet. It seems like everyone does something like that when they are zoning out, or anxious.
Zac: Yeah, I noticed that. I mean, what’s the big deal?
Sylvia: Well, how did you stop twisting your hair and doing the mole thing?
Zac: I don’t know…I guess I’m just not anxious all the time anymore. And when I am anxious, like at camp (Zac was a counselor in training at Dragonfly Forest) I don’t allow myself to do it.
Sylvia: Well everyone does little habits when they are anxious, it’s kind of dumb that some are considered acceptable, and some are not.
By Marlene Cohen and Donna Sloan
Buy this book from Amazon
Marlene Cohen and Donna Sloan, both board certified behavior analysts, wrote Visual Supports for People with Autism as a practical guide for parents and teachers. This book is so refreshing to me because the authors are incredibly positive about using visual systems to support learning for people with autism. They offer truly constructive ideas, and their book is extremely well-organized.
In the introduction, Sloan and Cohen point out that some people on the autism spectrum have trouble processing auditory input, and that visual information is absorbed more easily. They offer several simple methods for assessing a child’s auditory processing skills, including observing the child’s reaction to information presented visually alone, and verbally alone. They also recommend asking other people if they think a child responds better to auditory or visual information. The authors state that visuals are not always necessary for teaching everything, nor does everyone need the same visuals. Instead, they recommend using visuals for concepts that are confusing, or processes in which a person is dependent on someone else’s prompts.
Sloan and Cohen remark that it is not just people with autism who use visuals to help them understand what is expected of them. Most people use calendars, planners, highlighters, and post-its. Often, when people make presentations, they judge their audience and make carefully selected graphs and charts to explain concepts to that particular audience. Just as we do for neurotypical people, Sloan and Cohen explain, we should tailor visual supports for individuals with autism, instead of using the same ones for everyone.
When describing the features of a good visual support, Sloan and Cohen remind readers to consider the size, clarity, durability, and portability of a visual system. They also request that readers try their best to make age appropriate visuals, which will not undermine their users credibility is social situations. Sloan and Cohen seem to believe in taking data about the effectiveness of visual systems, and present several graphs as examples for data taking. They point out that there are many ways to take and record data, and that not taking any data opens us to the risk of continuing a system that is not working, or even causing additional confusion.
The bulk of the text is made up of examples of different types of visual systems; including schedules, comic strip conversations, graphic organizers, and power cards. The authors show how each can be used to address a need, like language development, and then move on to show how each can be used to help in another category, such as increased memory. For example, a power card is used as a short, portable visual reminder that a person can carry in their pocket. For language development, a power card might have a picture of favorite character saying, “Spiderman talks about other people’s interests by asking questions like, ‘Do you have any pets?” When used to increase memory, the power card might read, “Listen to the answer to your question, then comment.”
Sloan and Cohen’s book is a compilation of many others people’s work. The visual systems they describe have been invented by other people, and the authors are diligent about giving credit to original inventor. They are also conscientious about reminding their readers to try to fade out visual systems if they are not necessary anymore, a step that many autism professionals forget to do. Sloan and Cohen’s book is not biased toward any one modality. In fact, it is carefully neutral, which makes it accessible for people from any autism therapy background.
APA citation: Cohen, M. J., & Sloan, D. L. (2007). Visual supports for people with autism: A guide for parents and professionals. Topics in autism. Bethesda, MD: Woodbine House.
It with great pleasure that I write about one of the best projects I’ve ever worked on. Dragonfly Forest is a camp in the Philadelphia area that serves kids with serious illnesses and disorders. Two years ago, they decided to run a session for kids with autism, and I had the privilege of designing the program.
First, let me say that the camp is FREE for parents/families. Each session is about a week long, and it’s an overnight camp.
Part of the reason I was so excited to work on this autism program is because I truly love summer camp. I’ve worked at lots of camps, usually with my friend and mentor Scott Arizala, and I believe that everyone grows at camp. Kids, counselors, directors, and parents…everyone make these inexplicable leaps in understanding that most people do not understand. Camp is corny, it’s passionate, and it’s magical, and I highly recommend it for kids of all ages.
My other passion lies in the autism field, and connecting these two interests was and is thrilling for me. I decided to design the program to be very similar to other camp sessions, but with extra structure (& explanatory visuals), additional activity choices, and some extra staff.
I did not want to leave out any opportunities for fun, so we included the ropes course, campfires, canoeing, archery…the whole enchilada. Coming from a camp background, I felt very strongly that our camp was NOT supposed to be ‘therapy’, we were NOT going to shove any lessons down anyone throat. Instead, we were going to teach stuff the good way-by cramming as much freaking fun as possible into each day, and working to appreciate people for who they are, without trying to change them.
I was really nervous the night before the kids came…what if I forgot something? What if I was wrong and I accidentally over-estimated what the kids could do? What if someone gets hurt, or runs away (we had several runners signed up)? Did I sleep that night? Maybe an hour or two, tops.
Over the next few days, I was relieved to see that I had not underestimated anyone, my wonderful staff performed beautifully, and compassionately, and the kids loved camp. Let me be clear: autism camp is definitely not melt-down free (that would be ridiculous), instead it is a place where having a meltdown one minute doesn’t keep you from having fun the next minute. We accept meltdowns, and we move on. And the crazy thing is, that’s just one tiny slice of the magic that is camp.
Mike Belleme is the photographer who shot these great photos.
In my quest to encourage people to simply appreciate their co-workers, friends, and loved ones with autism, I sometimes come across this reaction:
“…but my child doesn’t know how to brush his teeth/take a bath/play independently. If I don’t make him learn, how will he ever be independent?”
I also struggle with this dilemma. When we actively teach skills to people with autism, we are walking a tightrope between creating eventual independence, and squashing someone’s true nature. How far should we push someone to do something new, before we are infringing on their dignity?
Here is what I say: If we can make appreciating the true character of the child central to our daily practice, we will keep the equilibrium we need to make solid moment-to-moment decisions. We can take time to plan stuff for them that they will LOVE, even if it’s not therapeutic. If a child loves bright colors, and could use some practice on personal hygiene skills, we can bring some bright paper or cloth out in the yard, play with it, and leave the skills for another time. We can find ways for her/him to get the sensory feedback they crave. Sometimes, we don’t have to practice anything hard.The Pressure of the Future:
Many parents of children with autism feel as if the entire burden of their child’s future rests with them, and if they could find the right therapy, the right combination of supplements, the right helper, then their child would be OK. This may or not be true. What is certainly true is that if you and your child don’t share some joyful moments, you will both feel frustrated, and under-appreciated.
When I center some of my daily musings on creating big fun (whatever that means for each child), l feel some weight lift off my shoulders. It’s not like I’m going to just stop teaching kids anything, but I’ve found that creating joy, just for fun’s sake, can center my mind to be able to take on the daily challenge of deciding moment-by-moment which battles to pick, and how to stick with them. Creating eventual independence for a child is truly an act of love, but we don’t have to wait until they are ‘finished learning’ to spend some time enjoying them, enjoying life.
Ladies and Gentlemen,
This is what I’m talking about!
Isaac Dealey at Autelligent Laboratories is, as I like to say, “Handling His Business“! Autelligent Laboratories is working to create jobs for 40 million (no, that’s not a typo) people with autism, worldwide. Their plan is described much more eloquently on their website, but the basics idea is this: design a reproducible business model, so that people can tailor it to their talents. Recruit autism-specific talent for their company worldwide, using the internet, and then help other business to do the same.
Check out a more in-depth document about AutLabs.
What I like the best about this project is that it is based on the strengths of autism. Mr. Dealey is talking about making money designing software for businesses, using what is awesome about people with autism (often strong analytical thinking, ability to focus, ability to see patterns etc). He wants other people to use AutLabs’ open-sourced business model to design business based on what they love to do. Our great country, and the autism community, has waited too long to capitalize off the strengths of autism! Why not set up a web-based business that doesn’t require a whole lot of politics, schmoozing, and small talk? Great idea, AutLabs.
Mr. Dealey has an Aspergers diagnosis himself, and is unhappy with the unemployment rate for adults with Autism and Aspergers (over 90% in the United States!), and guess what? He’s designed this really cool project to do something about it, not just for him, but other people too! Not that he needs it, but this project, and Isaac himself get an EmpowerAutism 10 out of 10 points.
This cool autism business project is still in the design phase, and could use your input. Please visit their wiki, and contribute ideas, time, or money if you can!
What do you think?
I would like to give public appreciation to the people with autism who have taught me some of the most useful lessons of my life. Here’s what I’ve learned (so far) from the people I know on the autism spectrum:
1. Clear communication
Many people with autism receive language quite literally. I can’t tell you the number of times I’ve unthinkingly said something like, “this is driving me up the wall”, and been met with a blank stare on the face of someone with autism. However, this section is about more than just clarifying idioms. I’ve learned to give explicit directions, and to anticipate when someone might not know my expectations. I can also (sometimes) remember to preemptively explain a few possible outcomes of important situations, before they become confusing. Do I stop using these tools when I speak with neurotypical people? Well, sometimes. But then I find myself tangled up in miscommunication again, and vow to get back on the expectation-setting wagon.
2. People will accept your quirks and faults, if you own them
I have been impressed with how many people and communities have accepted people with autism into them, quirks and all. My theory is that it’s easier for us to accept someone who accepts themselves, quirks and all, than it is to accept someone who pretends that they have no quirkiness. For myself, I try to keep this in mind, and not feel insecure about my own occasional quirk.
3. Saying what you really mean is truly powerful
When people (with and without autism) speak the truth in a room, most people retreat into that slightly-awkward/slightly-awed silence, and think, “wow, you just said what everyone else was thinking”. This is a powerful silence, where people are facing the truth. I love it when this happens, and have been inspired by it. Although sometimes it makes me uncomfortable to just come out and say what I think, I have found it to be a truly important practice. I mean, here I am with all the comforts and privileges of a neuro-typical, first-world, stable-family upbringing and I’m wasting my time in meetings talking circles around something a little touchy? The world needs us folks who aren’t worried about food and shelter to be more courageous than that, so that we can finish our conversations and make some real action happen.
So, thank you to all those folks who have contributed to my development. I hope I can be useful to you too.