Our schedule for this post: FIRST disclaimer, THEN soapbox.

Now, I’ll admit right now that I’m no fluffy optimist. I’m not as bitter and blustery as several of my ahem fellow bloggers, but I do have a sarcastic side, I try not to be too corny.

All that being said, I have high hopes for Autism Awareness Month every year. I truly enjoy the people with autism that I know, and, framed simply, I want others to be aware of how cool it can be to really know someone with autism.

ADDITIONAL DISCLAIMER: Statistically speaking, there are probably people with autism out there that I wouldn’t enjoy, and OF COURSE nobody is a joy to be around ALL the time, including me.

So every April, I get a little geeked out thinking about how more people will find about autism…and then the big month comes, and guess what?
1. My google alerts are full of sob stories and fundraiser alerts.
2. I don’t see any more public appreciation than usual (which isn’t much) for any:

So, since we are calling dibs on months to squawk about stuff, I would like to declare the month of May: The Empowered Autism Appreciation Month. Send me your celebrations, love stories, moments of hilarity, and victories having to do with autism. We can appreciate them together.

“Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
“Yeah”, is the response.
“Ok, it’s in the car. Do you want me to get it for you?”

…and this is when I start grinding my teeth. There are a lot of wonderful things about 1:1 services, but an over-dependence on constantly having a personal adult is not one of them. I am too-often reminded of governesses and servants when I watch these failed attempts at professional relationships unfold. Adults who are supposed to be teaching, guiding, and demonstrating independence end up descending into the role of carrier-of-stuff, fetcher-of-forgotten objects, and fall-guy for bad tempers.

To be fair, I’ve totally found myself in this all-purpose, waitress type of role in several of my early direct care jobs. Most places don’t train you how to stay professional, and to empower individuals in 100 small ways each day, instead of taking over.

Saying ‘YOU do it’, is empowering for both sides of a relationship. Should the direct care staff in the example above notice that a kid left his DS behind? Yes. Should said staff be able to predict later trauma when the missing DS is discovered. Yes. Does that mean the direct care staff should trot off to produce the thing? Definitely not.

Instead, consider the following:
“Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
“Yeah”, is the response.
“Cool. Go get it.”

In this scenario, the kid is encouraged for knowing what he wants, and empowered to do something about it.
If this conversation is (later) followed up with the implementation of some system for remembering items, then THAT is something I’m totally willing to pay tax dollars for. I’m not as interested in paying for endless babysitting.

I have seen many, many healthy direct care scenario’s (especially at the Autism Society of NC), with professional staff, and good supervision, and I believe that having really good one-on-one support can help people learn to do stuff for themselves…but only when we refrain from doing stuff for them.

In much of my work, I am asked to facilitate or design activities that are accessible to people on the Autism Spectrum. As it happens, this is not rocket science. People with autism do not need to play ‘autism soccer’ or play the ‘autism guitar’. I have not had to create a whole world of activities that did not previously exist. Instead, I tend to support activities that are already fun with clear expectations, and structured choices.

Visual support, or visually based expectations is a way of being respectful to a variety of learning and communication methods. However, all the visual support in the world cannot make a lame activity fun, and planning activities that are actually fun is also a sign of respect.

In the photo above, I am explaining how I want group members to act, using a list of expectations. This particular group of kids can read, and have done groups like this before, so the list is targeted towards them. As they read the expectations, we run through scenarios that could happen, such as not wanting to play a game that is on the schedule. When we read the part that says ‘we can choose which activities we want to do’, I ask them to demonstrate various methods for opting out, such as verbalizing ‘I don’t want to play this one’, or sitting in a place we’ve designated as an ‘I’m not participating right now’ place. These opt-out methods can be supported visually as well.

Usually, allowing participation to be optional is respectful in a recreation setting. However, I have known individuals who respond better to different kinds of choices, such as “what you eat for snack is a choice, but soccer practice is not a choice”.

I’ve found that most people with autism can enjoy a huge variety of activities, despite their purported rigidity and restricted interests, when the activities are explained clearly, and they are empowered with choices about their level of participation.

Dr. Andrew Wakefield, the doctor who first concluded that autism and the MMR vaccine were linked, was found guilty of over 30 charges by the General Medical Council last week. He has been on trial for more than two years. You can read the Fitness to Practice Panel documents here:

All over the internet, people are spouting reactions. Clearly, I’m a fan of the internet, and opinion spouting, but tonight I am concerned about the larger effects of this extended controversy.

What has the Vaccine Controversy Cost Us?

The vaccine debate is possibly the most divisive quarrel in the greater autism community (meaning people with autism, and their parents, doctors, and general entourage), and it has sapped a lot of our potential strength. I can’t even imagine the total amount of time and money we have spent researching, writing, analyzing, griping, gossiping arguing, blaming, defending, and promoting different sides of this issue. The fact that most of us who participate in this debate are immensely unqualified to speak scientifically about it does not seem to faze us, and, accordingly, the internet is littered with impassioned statements with little to no academic references.

Meanwhile, while we furiously type un-referenced diatribes, our growing community, which most of us agree is under-supported and poorly understood, has to make do without us. When we spend our energy pointing fingers at each other and howling about the idiocy and fraudulent nature of each other’s arguments, we lessen our potential as a united force for good.

I understand that many people feel THEIR vaccine argument just MIGHT be saving incoming children either by keeping them from being vaccinated, or by maintain herd-immunity, and I acknowledge the possibility of this kind of contribution. However, I want to point out that when we non-researchers put our energy towards creating empowered, positive attitudes and programs in our communities (see a list below for ideas), we aren’t gambling with our efforts. We can be reasonably assured that we are contributing positively in a community which can’t afford to waste any energy.

Autism community contributions with a high return rate:

I read a post over on Autism Learning Felt about an interview with Dan Burns (author of Saving Ben) and felt inspired by a line in the article about self advocacy. QUICK DISCLAIMER: I have not read Saving Ben, nor met Ben, so I cannot recommend or dis-recommend the book. Burns’ son, Ben, is 22 and has ‘aged out’ of school and government community supports. Burns writes in the interview about his wish that he, and by proxy, Ben had depended less on the school system, and focused more self-reliance and self-advocacy. I couldn’t agree more!

My definition of self-advocacy: a skill-set encompassing knowing what you want, communicating what you want, planning for yourself, and refusing things you don’t want. If kids (with and without autism) want to be able to make choices about their adulthood, they have to know how to do these things. In fact, these skills are part of the ‘hidden curriculum’ aka the ‘social curriculum’ of high school!

So, is it a mystery that kids with autism miss the hint on these highly-valued, but rarely explained skills? No.

It might be nice if schools taught these skills, but they don’t. Plus, kids are only in school for about 35 hours a week and they are at home for 133 hours per week. So it’s on us!

How we can learn to be better self-advocates? How can we break a skill like ‘knowing what you want’ into bite-size, practice-able bits?

The same way we teach everything else! Explain it, write about it, cartoon about it, talk about it, praise it, model it and narrate, and most of all, don’t give up on someone just because they ‘age out’ of school. Do neurotypical people stop learning stuff after high school? I sure hope not.

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’?

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).

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.