The Problem with Puzzle Pieces

The puzzle piece. It has been used as a symbol to represent autism for decades. But why was that symbol chosen? What does it mean to people? And for that matter, why are some of us so offended by it? Let me attempt to answer these questions.

The puzzle piece was first adopted as a symbol in 1963 by the National Autism Society (NAS), after a presentation titled “Perspectives on a Puzzle.” The reason given was that it was distinctly different from the logo for any other charity or organization at the time, as far as they could ascertain. Since then, other autism charities have adopted variations on it.

So what does the puzzle piece represent, exactly? It's entirely possible that the NAS meant it as an entirely innocuous logo. However, it can be difficult for a symbol like that to not have any meaning, even if it isn't intentional.

The first thing that I see is that it presents people as puzzles that need to be solved, or even that autistic people are puzzling. I find this to be a ridiculous notion, since all people are unique and complex individuals. I also find it to be insulting that a certain group of people are singled out as being in more need of being solved.

Now, some people will point out that the people are not the puzzle. They will say that the puzzle is autism itself. I don't feel that that's much better. For one, it seems like a variation on the same thing. All neurotypes are complex, and difficult for others of different neurotypes to understand. That even includes neuronormal. Just because something happens to be in the majority, that doesn't mean it's less difficult for an outsider to understand.

Perhaps it may have made sense when the puzzle piece was first used. At the time, there weren't many diagnosed autistic people who had the ability to express their thoughts, so it would have made sense that people wouldn't have had any way to know how their minds worked.

In modern times, though, the same traits have been found in much more verbal people. In addition, technology allows even nonverbal people to speak what's on their minds. Many people in both these categories are attempting to put our voices out into public awareness. We are trying to educate people about ourselves. We do understand the frustration that many parents go through. Those of us who are as opposed to a cure as I am have a stake in whether parents fully understand their children. We are working hard toward that goal.

The other thing I see in the puzzle piece is the implication that there is a missing piece. It feels as if people are saying that the reason we're different is that there is something we don't have that everyone else does. Most autistic people feel like complete human beings. Further, many of the organizations that use puzzle piece logos are searching for some sort of a cure. It makes no sense to complete the whole by removing something.

Several people have told me that maybe autism is the piece that completes society. Maybe the puzzle piece could represent that. It is true that it takes all types of brains to create a complete and functional society. However, if that's what the puzzle piece represents, shouldn't all neurotypes be symbolized as puzzle pieces?

I hope that has explained why some of us are repulsed by this symbol. So now what? What kind of symbol would be more appropriate? One thing I have noticed is that I have never seen an autistic-run organization that uses a puzzle piece as it's logo. There are many good ideas out there. My personal favorite is the infinity symbol.

Image from commons.wikipedia.org

The infinity was adopted as an autistic pride symbol by Aspies For Freedom. Although the founders are controversial figures within the autistic community, I feel that in this case they chose well.

The infinity symbol was chosen because it represents logic, intelligence, and continuity. It represents something that has always been and always will be a part of this world. The representation is simple and easy to look at, but the meaning is very complex. In short, while the puzzle piece represents everything negative about autism, the infinity represents the positives of the autism experience.

Do you have any other ideas for a symbol?

A Retreat into Mindfulness

By Melissa Farley, KindTree volunteer...
Copied from http://fullaccessblog.wordpress.com/2014/09/03/a-retreat-into-mindfulness/

A Retreat into Mindfulness

Dear Friends of Full Access,
This was my third year attending the Autism Rocks friends and family camp (aka: The Retreat). For the people who attend, this event is anticipated as a much needed break from the “neurotypical” demands of mainstream society. The retreat is located on a small peninsula in the Siltcoos Lake, near Florence. There are giant trees, wildlife, safe people, and divine densities of stars. There are also activities to choose from day and night: karaoke, canoeing, art, nature walks, live performances, and disco dancing. In this place, people are given the space to truly be themselves without judgment or expectation. One simply shows up as they are in this moment and is loved.

For Some, it Takes Time to Acclimate

My first year attending the retreat, I was nervous. I had been hearing about it for years and wanted to attend, but spending a weekend camping in an unfamiliar environment was intimidating. Finally, after too many excuses, I made it. I parked my car and walked through the camp full of dozens of unfamiliar faces to register. When I wasn’t working my kitchen shifts, I spent a lot of time alone walking through the forest, reading in my tent, napping…I felt awkward. I didn’t know how to connect. I wasn’t sure I would be back again.
The next year I was employed by Ryan to help with his career as a Dean Martin impersonator. I worked with him and Jed, a Frank Sinatra impersonator, to prepare a stage show for last year’s retreat. At their request, we got a few ladies together and choreographed a showgirl routine for their finale. Dancing in a feather boa to a shouting crowd, on a peninsula in the forest was a blast. I felt more connected than the previous year; I thought I might be back.

But Then We Make Friends

To quote the KindTree website: “The retreat is a time for rejuvenation and solidarity. Autists are accepted and enjoyed for themselves, not forced into a procrustean neuro-normal mold.” There is a beautiful empowerment that comes from this experience. Many of us take feeling relatively “normal” for granted. At the retreat there is no template for normal. We are all normal. We all belong and are invited to join in each moment with love and acceptance. Campers make friendships that last year after year. Every year I see faces light up as friends arrive from afar and tears as they have to say good-bye.
This year, arriving through massive pines and stillness felt like sinking into a warm bath, like an easing of my aching bones. I got there late and it was getting dark, so I hurriedly set up my tent. I could hear The Raventones playing music down at the Chapel stage. I decided I’d get the rest of my stuff later and rushed over roots and through bramble toward the sounds of TR and Randy playing “One Size Fits All”. Friends greeted me from the shadows, silhouettes of happy autists decorated the dance floor, and I felt like I had arrived home.
Over the years, as I released my attachment to fitting in, I began to glimpse what this event means to the autists who attend. I accepted that I am an introvert. I need to spend time by myself and it is socially acceptable to do so, even in the midst of a very socially interactive community. I never expected to find myself experiencing this type of relief. I expected to support others as they found their comfort zones but there I sat, alone, light filtering through branches with softly striped brilliance and I felt more comfortable than I had in a long time.

And Then We Feel Loved

I have seen thisblossoming happen for both campers and their families. The feeling of being accepted as we are, with no demands to fit in, is a feeling many of these people do not often get the privilege of enjoying. But for these few days we can flap, stim, talk to ourselves, follow others around talking endlessly, rock back and forth, stare, avoid eye contact, shout, laugh, and sing to our heart’s content. We are free to flow and free to allow our loved ones to flow without ridicule or judgment.

And Then…It’s Like Buttah

I cannot speak for other attendees, but for me, the feeling of interconnectedness increases as I let go of expectations and just enjoy each moment as it comes. I did not expect to be floating on the dock at midnight, staring at the Milky Way with new friends. I also didn’t expect to be quoting Saturday Night Live while making crowns out of old telephone cables, but have you seen Barbara Streisand in the Prince of Tides?!?! It was like buttah. Mindfulness comes naturally in this environment. We arrive ready to be present in each moment without reservation. It is this presence of mind that allows each individual to shine and blossom in their own unique way. We do not fly off to some exotic retreat to study mindfulness. We retreat to the forest near Florence, Oregon. We get dirt on our shoes and eat s’mores. We smile and sing and scream, right here, right now.

Melissa Farley
Personal Agent, Full Access, Eugene, OR

My experience at 2014 KindTree - Autism Rocks Friends and Family Camp

From Katie Clark...

My experience at 2014 KindTree - Autism Rocks Friends and Family Camp.

I went to the Kindtree Autism camp on my own for the first time. i always went with my mom and her ex Robert. well Robert did karaoke for the camp for 6 years and then stopped doing karaoke when he fell ill so we didn't go for 4 years. and then i went by myself to the 2014 kindtree camp.

i really enjoyed myself and did well on my own there. well my friend Mary who is president of kindtree and her friend Johanna helped set up my tent for me and get my stuff that was in a wheelbarrow. they were great help.

i moved to La Pine Oregon which is in Deshutes county in Central Oregon and don't get to see my friends most the time since moving, so it was nice to go to camp and see all my friends and hang out with some.

well i have High Function Autism and the camp is a way for me to be around others with Autism and to get to be myself. i enjoy the activity's such as the RavenTones, Frankie and Deano, and the talent show, and i really enjoyed the stim room or quiet room - a place where those with Autism can go and unwind, have quietness and stim and get calm. the food is good too, i specially like the lasagna .

well i got to really enjoy the camp after going for a while with my folks, seeing how the volunteers and staff how they accommodated people with Autism, how they could be them self and not be judged, how they had a place to camp that was made specially for them to be them self and be safe, how some of them were interacting with others when they may other wise not do as well at, or how some of them would do things like the talent show when that may other wise not be easy for them to do. they may not feel so comfortable doing a talent around a crowd or communicating to the crowd. it just felt like a place that was meant for me to be how i wanted to be and not be told other wise. 

i also enjoyed spending time with Mary, you know the president of kindtree who also has Autism. i went with her to the raventones, the talent show, and Frankie and Deano, and went with her where they were doing a fire and smores, and went to the water front with her as well. i would not be able to do those things with her since moving except at the camp. it was nice to spend time with her that i don't get most times. I just love the whole atmosphere of the camp and how they run it plus because of kindtree and Mary i have met lots of people and are friends with a lot of those people.

An Experience Unlike Any Other - The Autism Camp

Two weeks ago, I attended what I consider to be the ultimate getaway for an autistic person. A local organization, Kind Tree – Autism Rocks, stages an annual three day camping trip on the Oregon coast. This was my fourth year in attendance, and I don't plan on missing another in the future.

There were roughly 240 people in attendance at this year's Autism Camp, including seventy volunteers. Guests include people from all sections of the autism spectrum, including self-diagnosed, as well as family members. The volunteer staff is composed of autistic people, family members, professionals, and anyone with an interest in contributing.

Once we're all there, there is no line drawn between autistic and non-autistic. The only line drawn is between guest and volunteer, and even that is mostly just when the volunteers are on duty. Two years ago, one of the board of directors of Kind Tree was told by a lifeguard at camp, “I can't tell who's autistic and who's not!” She responded by saying, “Good! That's the idea.” In my observation, even that misses the point. The real point is “Who cares?” We're all people, we're all individuals, and we're all there to have fun.

In fact, the core tenants of the Autism Camp are safety and fun. The fun requirement is filled with good food (three meals each day, and snacks available all day), music almost everywhere you go, and a schedule packed full of activities. Activities include arts & crafts, nature walks, non-competitive sports and games, swimming, and performances. If you're bored, it's because you're trying to be.

Of course, with all of the activities there are, no one is required to participate in any of them. If you want to spend the entire weekend reading or sitting in your tent, there's nothing wrong with that. In fact, some people do it that way. Again, it's all about having fun.

The safety aspect is handled a little more carefully, without being overbearing. It's mostly about presence. Of course, there are always lifeguards present at the waterfront. In addition, there is also a group of volunteers known as the vibe crew. There are always two to four of them on duty at any given time. Their job is mainly to be there and ready to help if it's needed. Otherwise, as long as everyone is being safe and having fun, they just allow people to do what they're doing, without interfering.

For an autistic person, attending this camp, whether as a guest or as a volunteer, should feel like coming home. The first time I attended was also the first time I felt like I was part of the normal population, because autistic is normal there. It was an amazing feeling that I've never felt anywhere else. The now president of Kind Tree, who is also autistic, has said of her first time that it felt like she had found her tribe.

I believe this is because autism is seen as something to celebrate. Autistic people are not required or even encouraged to hide their traits. It is a weekend to simply be yourself. A freedom that many on the spectrum do not normally have.

It has been said that everyone is autistic by the end of the event. I have noticed that the neuronormal people in attendance do tend to absorb some of the behaviors of those surrounding them. When people notice this, they usually mention how good it felt. In fact, some of the first time volunteers who have never had much exposure to the autism community come away wondering if they might even be autistic as well.

There is one specific story I would like to share. A woman who came with her teenage son publicly read a part of a book that she is writing. Her son had never known friendship when he was growing up. He had been rejected by other children his age. She said that he had grown to hate himself, and that he used to self-harm.

His first time attending the Autism Camp, she was surprised to see him hanging out and playing with other people. He had made friends. When they left, he did not continue to engage in self-harming behavior. He had grown to stop hating himself. Each year, he looks forward to seeing the friends he made at camp.

Sadly, I don't think this story is uncommon among a population that is repeatedly made to feel inferior and defective. Each year, there are people that are reluctant to leave camp because of a newfound sense of belonging and a vastly improved self-image. Each year when I leave, I am grateful that something like this exists.

If you like this idea, but you don't have anything like it near you, I strongly encourage you to create your own version of Kind Tree in your area. It doesn't even need to be big.

Kind Tree was started by two people that worked in a group home. They were disgusted by the lack of activities provided for the residents, so they decided to take some of them on a retreat for a day. As Kind Tree was able to acquire more resources, that retreat gradually grew into what it is today.

No matter what that retreat has consisted of, the biggest thing that has always made it work was that those in charge of it have always held a healthy respect for the guests as fellow human beings. There has never been any attempt to “fix” them or to alter their behavior. Instead, the Autism Camp and all other Kind Tree events are times to be yourself, no matter how weird, unusual, or silly that might be.

If you are interested in taking part or starting your own, check out www.kindtree.org.