Today’s post is for parents of children with autism, people who work with kids in the autism field, and anyone else who has to walk a fine line between pushing boundaries to teach skills, and making room for people to be just be who they are.
I’ll start by saying that I do not have a child with autism, so I can’t relate to the full scope of your situation. However, most of my kid-related autism jobs involve working closely with families, and I’ve spent significant time with about 50 families. What does ‘significant time’ mean? That means I’m that overly-chipper girl that shows up in the kitchen when you’re still groggy in the morning to help make a ‘morning routine’ schedule. It means I’m the girl who knows the details of the potty struggles. I have had to frantically search the yard with a flashlight to find Thomas the Train, and I cringe when strangers act like autism meltdowns=bad parenting. I know that most parents of a child with autism are sleep deprived, financially concerned, and in hot pursuit of reliable information.
I’m saying all this because I generally think that advice from people who don’t know what you’re going through is condescending, and relatively useless…and there is no getting around it: what I’m about to say can only be categorized as unsolicited advice.
The only thing I can say in my defense is that I made these lists for myself, for when I forget the important stuff about teaching a kid (with or without autism) to be a grown up.
Enough disclaiming. Here it is. Two short, sweet, lists that bring me back to basics:Do:
1. Address anxiety directly. I don’t always know what makes other people anxious, but I can make some good guesses: transitions, new stuff, and confusing expectations. What should I do for myself when I’m anxious about unavoidable stuff? I should prepare for it, usually in a visual format (think planner, journal, diary or sketchbook). I can prepare kids for this stuff too. When I start dropping the ball on setting clear expectations, complete with transition warnings, everything falls apart.
2. Remember sensory sensitivity. Again, I don’t always know what icks people out, but I can make some good guesses: too much light or noise, crowds, itchy clothes, and too much to look at. I can adjust my own perspective, based on the environment, and I should.
3. Sit back and appreciate the true character of the kid under your care. This one is so important to me, that I wrote a whole post just on this topic.Don’t:
1. Nitpick. Figure out the one, or occasionally two, most important things for the next three hours, and hush up about everything else. It’s tempting to over-correct, or to feel embarrassed about someone else’s manners and critique them, but 100% of Empower Autism authors agree, it’s a bad idea to nitpick. In the long run, the child will suffer from insecurity, and I will suffer from frazzled nitpicker syndrome (a condition immediately obvious to those around me).
2. Talk too much. For Pete’s sake, I’ve been doing this for years! Why can’t I just remember to give a short verbal explanation, and back it up with visuals? Instead I sometimes find myself blathering on as if I was making sense.
On the occasions that I can keep all of these things in mind, I have more fun, and so does everyone around me. As simple as they sound, these four things are definitely not easy. However, I believe that each one is a concrete way to be respectful of autism.What are your Autism ‘do’s and don’ts’?
This is part of a paper I wrote about Early Intervention. It’s a little long, and a little wordy for the casual internet reader, but, every once in awhile, it’s important to nerd out and get intellectual and precise. There is a link to my citations at the end.
Here we go.
In the United States, the idea of ‘early intervention’ (EI) arose in the late 1950’s, and early 1960’s amidst the fallout of Brown vs. the Board of Education. At the time, many people believed humans inherited their intelligence genetically, and that differences in standardized scores could be explained by race or heritage (Ramey & Ramey, 1998). Against this backdrop of inherited intelligence, several learning theorists began to focus their research on the significance of the first few years of life (Harlow, 1958, Hunt, 1961). Additionally, a study done by Skeels and Dye (both named Harold) influenced the psychological community about intelligence development in children with mental retardation, and the potential intelligence-development of all children (Skeels & Dye, 1939).
As the idea of a mutable, developable intelligence grew, several researches performed pivotal, successful, randomized early intervention trials on young children (Caldwell, 1973), which provided the basis for the federally funded Head Start program in the United States (Zigler & Muenchow 1992). Incidentally, Sputnik, the Russian satellite launched in 1957, had just trumped the United States in the technological innovation category, and it is rumored that programs like Head Start were more willingly funded in the hopes of creating smarter students, more quickly (Ramey & Ramey, 1998).
The Head Start program set the precedent for other government funded interventions, including early intervention programs for children with disabilities (Ramey & Ramey, 1998). Each state is now required to provide early intervention for those who qualify using, “services which are designed to meet the developmental needs of an infant or toddler with a disability, as identified by the individualized family service plan (IFSP) team, in any one or more of the following areas: physical development, cognitive development, communication development, social or emotional development, or adaptive development “(IDEA, 2004).
For children with autism, early intervention began in the 1980’s after Eric Schopler revealed that outcomes for children on the spectrum could be improved through direct teaching (Schopler, 1987). Researchers then studied outcomes for younger children, and found that, with proper techniques, many children who receive early intervention services make measurable developmental gains (Bryson, Rogers, & Fombonn 2003, Dawson, 2008). Early intervention is now considered a best-practice in the autism field (Woods & Wetherby, 2003, Stahmer, & Aarons, 2009), and each state is mandated though the Individuals with Disabilities Education Improvement Act (IDEA) to provide free early intervention services (IDEA, 2004). However, the precise method by which these services are presented differs throughout the nation (Odom, & Wolery 2003).
Although each early intervention service may feature a different array of treatments, the most effective early intervention programs for children with autism are behaviorally-based (Dawson, 2008, Sallows & Graupner, 2005), family-oriented (Schreibman, 2000, Odom & Wolery, 2003), focused on joint attention and language-learning (Kasari, Paparella, Freeman, & Jahromi, 2008) , and engage the child for at least 25 hours per week (Cohen, Amerine-Dickens, & Smith, 2006, National Research Council, 2001).
Periodically, I will be writing autism news updates on the site to keep us all as informed as I can about the current autism buzz. I am trying to be factual, so if you notice something that isn’t correct, please contact me and let me know ASAP! I’m not trying to contribute to the embarrassing mass of autism misinformation. Also, if you have news that you think should be added, please send it to me, or comment on this post.
Global Autism News:
The potential fallout from this change could affect the semantics of insurance coverage, service provision, and autism incidence statistics. Plus, Aspies who are proud of their label will have a dilemma too. : )
United States Autism News:
Autism in the Media:
A few weeks ago, I met with the Interpretive Association at the Cradle of Forestry (I’m working with them to make an autism-friendly adventure trail in Brevard!), and had a pleasant surprise. I had just pulled out my soapbox (which is never far from my side), in order to drone on about how to set up a successful autism program, when this quiet intern who I hadn’t met before stops me and says,
“Before we begin, I just want to say that I have Aspergers Syndrome.”
Sweet! My work here just got 500% easier.
Let me explain. This is what I would have soapboxed about:
A. People with autism don’t need the fun ‘toned-down’ for them. As a group, they don’t need easier games, flatter terrain, or simplistic versions. I have never come across an activity that people with autism just cannot do, because of their autism. Sometimes people with autism need more thorough explanations (often in a visual format) about what to do, but that doesn’t mean they should have to play the boring game, or do the undemanding activity. In fact, just like myself and other neurotypicals, people on the spectrum get squirrelly and/or tune-out when they’re bored.
B. We all need more thorough explanations sometimes (often in a visual format). How many of us send out meeting agendas (or wish we would) before we have meetings, so that the whole meeting knows what to expect? How many of us have travelled to a place where we don’t speak the language, and wished we could access a more thorough explanation, in a format we could understand?
C. As a group (with some exceptions), people with autism process information more easily when it is written down, or in a picture format if they do not read. Using visual explanations/expectations gives people with autism more access to the fun (read: life). It really doesn’t have to take a boatload of effort for our parks, museums, restaurants, and bars (yes! People with autism drink too!) to be more accessible to more people on the autism spectrum.
But I didn’t have to say all that, because this intern was there, who they clearly knew and respected. Nobody in the meeting was about to look this kid in the face and suggest that we set up even slightly dumbed –down adventures, or that we ‘protect the autism population’ by making the games too safe (read: boring). Kudos to the Cradle of Forestry for hiring someone on the autism spectrum, and for respecting that person’s expertise (in forestry and in autism).
Blue Ridge Bags and More is a small business, owned by the Autism Society of North Carolina, which employs adults with autism. As part of my job at the Autism Society, I am the official director of Blue Ridge Bags, which is how I know that we need some serious help! See, we have a really cool business, that is actually useful for folks (with and without autism), but nobody knows about us!
We have two parts to our business, and sadly, neither of them is making any money, so I’d like to appeal to you, dear readers, to help me spread the word about Blue Ridge Bags, in the hopes that we can boost sales.What We Do at Blue Ridge Bags
Our adults with autism assemble TEACCH Home Teaching Kits, which are actually pretty sweet. I have seen a lot of gimmicky autism products in my 10 years in the field, and I can safely say that Home Teaching Kits are useful. They consist of a collection of tasks for a person with autism to do (usually sitting at a table), and an instructional video of how to run the tasks as a parent or helper. The coolest part about them is that parents or helpers who use Home Teaching Kits will actually learn to run any kind of task, and possibly invent their own tasks.
The people with autism who work for us also produce art, which we heat transfer onto canvas bags, mouse pads, cards etc. This part is so fun for all of us. We get to set up environments that are inspiring to the artists (nice lighting, spinney things, photos of their favorite stuff on the walls), and offer a variety of supplies, and then see what happens. Each artist decides if they want to donate their art to the business, or if they want a percentage of profit.
Right now, we employ people with autism who have job coaches (publicly funded), who help them manage their time, take breaks when they need to, and organize their workload. Our accounting and marketing is done out of the state office of the Autism Society of NC, but I would like to hire people on the spectrum to do those jobs for our business. In fact, I would prefer that someone with autism ran the business, but we don’t have money to pay for any of that. SO. If you would like to buy teaching kits, or art, NOW IS THE TIME! If you have any great ideas for helping Blue Ridge Bags, please be in touch!
In order to increase our revenue, we are also offering our services in bulk mailings, or other such office-type tasks. Please email me email@example.com!
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?