Sunday, March 15, 2015

Autism Acceptance Month

For years, April has been observed in several countries around the world as Autism Awareness Month. Because of this, autism is now a household word, and most people are at least somewhat familiar with the kinds of challenges we face. With some help from the internet, the autism community is more connected than ever.

There's no question that autism awareness has led to some important accomplishments. However, I think it's time to take the concept even further. Some autistic-run organizations, such as the Autistic Self-Advocacy Network (ASAN), have proposed that we make the change to Autism Acceptance Month.

It might seem like a small change. Maybe unimportant, or strange to even consider. Awareness to acceptance? Let me see if I can sell you on it.

First thing, we're not removing anything from the spirit by taking the word 'awareness' out of the name. After all, it's hard to pro-actively accept something that you aren't aware of.

I think the only problem many of us in the autistic community have with Autism Awareness Month is how the awareness seems to be implemented. Most people seem to approach it the same way you would approach cancer awareness, as a horrible disease that affects millions of people, and needs to be stopped as soon as possible.

Most autistic people feel that's a poor representation of how we see ourselves. We recognize that we have different challenges that can make life difficult for us. However, we don't feel that this is a good reason to change who we are.

In addition, certain rhetoric, such as that of reclaiming lost children, can be damaging to some autistic people. You have to remember that this is how we were born, and it's how we'll always be. The notion that a person must be normal in order to qualify as a full person or to be seen as valuable to society can lead to severe depression when it's discovered that that's an impossible goal.

Another thing I often hear this time of year is to say that if a person displays a vaguely autistic trait, then they might be autistic. For example, if you see a child screaming in public, remember that they might be autistic. I find this to be useless, accomplishing nothing except creating unnecessary barriers between autistic and normal people.

Instead, let's try to keep in mind that autistic behavior isn't so different from that of a normal person. To use a similar example, if you see a child that you know to be autistic screaming in public, try to remember that most children use some form of tantrums to alert nearby adults that something is wrong.

So what should we be observing during Autism Acceptance Month? I would say that the focus should be on the positives. Recognize the positive traits of autism and think about what autistic people are good at. Remember the autistic people in your life. And above all, never forget that no matter what we look like or how we act, we are people, just like you.

I don't mean to ignore the negatives. We've all heard about social difficulties, problems reading nonverbal communication, repetitive, stereotyped motions (also called stims), adherence to routines, and narrow interests. Those are very real, and can be problematic in certain situations.

However, I believe most of the positive traits are the same traits as the negatives, but in a different context. Let's examine that with the above examples.

Let me go ahead and start at the end of the list, with narrow interests. I prefer to think of them as focused interests. In fact, the narrowed focus allows us to learn in depth details about that interest very quickly. Most of us will branch out into related subjects when we find we have to learn about something else to learn more about our interests. This also fits with the way most autistic people learn, starting with specifics and branching out into more general subjects.

As for routines, most autistic people, and in fact, most people in general, don't always like to deal with the unexpected. Many of us also need to take time to process how to handle a situation. Having a routine helps because it simultaneously creates a preset series of situations, meaning the thinking has all been done ahead of time, and limits the likelihood of unexpected circumstances.

I know part of the problem is that routines can sometimes be inefficient. Think about how many neuronormal people you know with inefficient routines. I don't mean to say just let it go, but when we're talking about acceptance, we should allow the same amount of leniency for inefficient behaviors toward both autistic and normal people.

Stimming is another coping mechanism. As far as I can tell, there are two main reasons to stim. One is to keep the mind running during times of high activity or near inactivity. The other is to burn off nervous energy to diffuse an impending meltdown.

In the spirit of acceptance, I should point out that stimming is another thing that neuronormal people engage in. Have you ever found yourself tapping a pen? That's the first type of stimming. How about nervously pacing? That's the second type. What would happen if someone were to stop you from either? Considering that, it should come as no surprise that stopping it isn't usually the best idea.

The social difficulties are a little tougher. You have to bear in mind that autistic people tend to be highly logical. As any Star Trek fan can tell you, human interaction tends to be highly illogical. Simply put, our brains are not wired to pick up on social rules. We're capable of it, but only through deliberate learning and conscious observation.

On the other hand, having a highly logical mind can be a huge advantage in several areas, including science, music, language, and many more.

One final note, take a moment to think of the autistic people in your life. What have they contributed to your experience on Earth? What would your life be like without them? It's likely that you know at least one or two autistic people, even if you don't know it.

To paraphrase notable autism activist Ari Ne'eman, normal should not be the goal. Happiness should be the goal. If you can, try to learn from us, autistic people, about autism this Autism Acceptance Month.

Sunday, March 1, 2015

Special Announcement: Day of Mourning

On this day, March 1st, disability rights groups from around the world are remembering the lives of disabled people who were killed by their families. Over seventy people with disabilities were killed by family members over the past five years, with at least ten in the last year.

Too often, we are told to sympathize with the victims' killers. Those reporting the deaths seem to forget that the victim was a human being. All lives matter, including those of disabled people.

Please join me in remembering these people. The following is not a complete list.

Lexie Agyepong-Glover, 13
Faryaal Akhter, 2
Zain Akhter, 5
Casey Albury, 17
Caylee Anthony, 2
Karandeep Arora, 18
Angelica Auriemma, 20
Zahra Baker, 10
Leosha Barnett, 18
Charles-Antoine Blais, 6
Benjamin Barnhard, 13
Markea Blakely-Berry, 16
Jeremy Bostick, 11
Gabriel Britt, 6
Scarlett Chen, 4
Johnny Churchi, 13
Julie Cirella, 8
Daniel Corby, 4
James Joseph Cummings Jr., 46
Laura Cummings, 23
Ryan Davies, 12
Christopher DeGroot, 19
Peter Eitzen, 16
Payton Ettinger, 4
Maxwell Eyer, 2
Marcus Fiesel, 4
Jeremy Fraser, 9
Glen Freany, 11
Betty Anne Gagnon, 48
Jared Greenwood, 26
Pamela Camille Hall, 59
Francecca Hardwick, 18
Walter Knox Hildebrand Jr., 20
Naomi Hill, 4
George Hodgkins, 22
Kenneth Holmes, 12
Tom Inglis, 22
Gerren Isgrigg, 6
Chad Jackson, 25
Christian Clay Jenkins, 14
Tony Khor, 15
Daniel Kirby, 4
Ethan Scott Kirby, 3
William Lash III, 12
Tracy Latimer, 12
Daniel Leubner, 13
Jori Lirett, 7
London McCabe, 6
Katie McCarron, 3
Christopher Melton, 18
Jude Mirra, 8
Emily Belle Molin, 85
Noe Nedina Jr., 7 months
Chase Odgen, 13
Pierre Pasquiou, 10
Tiffany Pinckney, 23
Kyla Puhle, 27
Criste Reimer, 47
Rylan Rochester, 6 months
Rohit Singh,7
Ajit Singh-Mahal, 12
Alex Spourdalakalis, 14
Calista Springer, 16
Ulysses Stable, 12
Melissa Stoddard, 11
Shylea Myza Thomas, 9
Lakesha Victor, 10
Shellay Ward, 7
Courtney Wise, 17
Lloyd Yarbrough, 62

Ten Years of Autism Speaks: The Autism Community's Response

The world's largest autism charity, Autism Speaks, has now been in existence for ten years. To celebrate, the organization has launched a Twitter campaign, #AutismSpeaks10, where they have asked people to share comments about how Autism Speaks has affected their lives during the past decade. The autistic community used the hashtag to do just that. Here are a few examples:

This is only a small sample of the response that took place. Most of what I quoted here was from the first few days, but the conversation has continued to today.

I know what you may be thinking. To a certain extent, I did choose tweets that were opposed to Autism Speaks. However, when you ignore those posted by Autism Speaks themselves, founders Bob and Suzanne Wright, and various politicians, this is the general tone of the vast majority of tweets under this hashtag.

Autism Speaks has responded to this takeover on the part of the autistic community by creating a new hashtag, #AutismChampion. The result was much the same. Again, the autism community leaped into action to state their champions. For many, Autism Speaks and its founders do not make the list.

This raises an important question. Should we really continue to support an organization that is so emphatically opposed by the very people it claims to be trying to help? This seems to be a sign that they aren't representing the needs of the community. After ten years of ignoring us, I think it's safe to say that they aren't going to listen.

In case you're wondering, I'd like to briefly explain how Autism Speaks has touched my life. Few entities have worked so hard to spread so much misinformation and cause so much fear and pity. Autism Speaks has given me a sense of purpose, to counter the negative messages they spread.

Thank you, Autism Speaks, for giving the neurodiversity movement something to gather around. In the words of Twitter user @AutisticWiki, We no longer ask that you accept us. Now @autismspeaks , we just want you to get out of the way. #AutismSpeaks10 #ActuallyAutistic