All opinions and views stated on this site belong solely to Corina Lynn Becker, and do not represent or reflects the views and opinions of any organizations, unless otherwise specified.

Saturday, October 30, 2010

Addressing Criticism for Autistics Speaking

Okay, there have been quite a few criticisms for Autistics Speaking Day.  I would like to be blunt and address these:

1) this event is about autism awareness.  Yes, it is a response to the Communication Shutdown, and counters it, but the ultimate goal is Autism awareness by providing autistic people a united opportunity to share experiences. By whatever method of communication possible.

2) there is no donation goal.  Yes, people have suggested alternative organizations and things to donate instead of Communication Shutdown, but that is individual.  On a whole, the purpose is about raising awareness.

3) Just because someone is doing something with good intentions doesn't make our feelings invalid.  We don't like Communication Shutdown for reasons stated in the information.  As autistic persons, we are completely justified in having an opinion on what's being said about us, and have a right to be involved in all matters that relate to us.
Thus, if we are upset by something, we have the right to do something about it.

4) we have never stated there is a limit on ability level for participants.  It's rather presumptuous to assume that everyone taking part is of the same "ability" level. 

Wednesday, October 27, 2010

Preparing to be Loud

In my previous two posts, Real Communication Shutdown and Autistics Speaking Day, I proposed that on November 1st, instead of shutting down our online communication, that online Autistics be loud. 

The idea is that since NTs are taking part in Communication Shutdown, and are at least going to not be saying anything on Twitter and Facebook, that we should take the opportunity to share our experiences and our strengths, and what it's like to be autistic.

While this is certainly a response to Communication Shutdown, whether it is a counter-event or protest of the Shutdown depends on whether or not you agree with Shutdown.  This can be a complementary event, an alternative event or a counter-protest event.  We can agree to disagree on the details about this.  What matter though, is that people participate.  

This event is open to EVERYONE, in every country and region.  You want to take part, awesome! Go ahead; on November 1, tweet, post on Facebook and/or blog. 

When I proposed Autistics Speaking Day, I merely thought that it'll be myself plus a couple of others participating.  However, it turns out that there are a lot of people who feel the same, and different names for it, from Autism ShoutOut! to our Autistics Speaking Day. 

The name for it doesn't matter.  This is a day that is supposed to be about spreading Autism Awareness, therefore it's OUR day.  It doesn't just belong to me, it belongs to all of us, and what matters is that we stand together to raise Autism awareness. 

As I've said before, I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our "obsessions", while being mindful of the subject matters, as some subjects are triggers for people. 

I'm not one for organizing this into an organized event; I'd rather this continue to be a very free-form event where people participate as they choose.  As for me? I'll be online, on my Twitter that goes to my Facebook.  I hope to post here as well, perhaps link to some of what I consider my best posts.

I will also be dedicating an hour of my Twittering for The Coffee Klatch at 2pm EST.  

If you'd like a little more organization, Kathryn Bjørnstad has set up a Facebook Events page for Autistics Speaking Day

Also, I believe the Autism Blog Directory is complying a list of Autistic blogs and participants, if you'd like to share with them. 

Thank you all very much for all your responses and support!!  I can't wait to hear you all on November 1st!

Monday, October 18, 2010

Autistics Speaking Day

As I've previously stated, November 1st is Communication Shutdown, and from the responses, it seems that more and more people are questioning the method of this Autism awareness event. As has been pointed out by bbsmom, it spreads the myth that autistic people don't communicate, when in truth, we communicate in many different ways.  While the attempt to understand our difficulties is admirable, I don't think that a non-autistic person can fully understand an autistic reality, even with some intense simulations. 

Not that I'm against letting them try to understand us, as much as we try to understand non-autistics.  However, from a community perspective, we should be listening to the different ways that Autistic people communicate. 

At the end of my last post, I stated that on November 1st, Autistic people should speak up and be heard.   That in the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences.  

Yet, I must also add caution, to be mindful of the subject matters, as some subjects are triggers for people.  I would hate to hear that a person had a panic attack, flashback or meltdown and suffered due to something in the information shared. 

I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our "obsessions". 

And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day. 

Who will join me?

Friday, October 15, 2010

Real Communication Shutdown

On November 1, there is an Autism awareness campaign called Communitcation Shutdown, whereas people are encouraged to stay off Twitter and Facebook for the day in order to promote an awareness of the communication difficulties that Autistics face. 

A person is supposed to donate in order to get the charity app.  The app doesn't really do anything, other than post a little image on your picture to say you're participating.  Whether or not you stay off Twitter and Facebook is entirely up to you. 

And this is supposed to help simulate the communication difficulties that Autistic people face. 

I'm sorry, but no.  Just no. 

Yes, I know Temple Grandin supports this campaign, and I appreciate their creative approach to this, but I don't think that this gives the NT population a complete experience on the communication issues we face. 

Why?  Because it relies on the assumption that everyone participating uses Twitter and Facebook to communicate.  While I realize that these sites make communication easier, it is not the only way in which NTs can communicate online, and thus subvert the entire exercise of the campaign.

I was recently asked by a person on Twitter to participate, and I responded that there wasn't much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating.  I pointed out to this person that Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline.   I also remarked that this is a flawed simulation, since a non-Autistic person still have the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability.

The question now becomes, what would be a better method for Communication Shutdown that would have the most impact for those involved? 

Okay, for the NTs participating: do a total communication shutdown.  Go all the way.  Turn off your cell phones, log out of your instant messengers and email, unplug your home phone*, cover your mouth with a piece of cloth and don't say a word.  Don't text.  Don't type.  Don't write.  Don't speak.

If you can help it, turn off your Internet. 

Completely and utterly disconnect yourself from any form of typical communication.

I understand that there will be some who can't resist at least signing in and watching feeds go by.   For those, just watch. 

As for my fellow Autistics, as the NTs disconnect and fall silent, let's speak.

Let us use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to Autistic. 

Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy. 

Let them hear our voices and take back the Autism community.

Let us speak.

Let us tell you want it's like to be us. 

And that, would be true Autism Awareness.

*except in the case of an emergency.  Don't want you to risk your life, eh.

Thursday, October 14, 2010

Autism, Apps, and Adults

There's been quite a bit of news lately about how Apple's iPad can assist Autistic children. The stories I have heard are wonderful and hopeful, on how iPads and iPods could bring about a new era of portable supports, learning, and communicative devices, and independence. It has been pointed out that the portable devices, while not cheap, are inexpensive when compared to other specialized devices -- which are often too bulky to carry around and be applicable to various locations and situations.

With the development of specialized apps, a child, parent, teacher or caregiver can carry a small, slim device filled with programs to communicate, understand how to go places, be prompted on doing tasks, keep organized, learn social skills, filter sensory input, and regain calm from stress. For those with motor control problems, the large screen of the iPad offers more accessibility and opportunities for skill development, while still maintaining the portability and function of the iPod Touch. The added bonus of it being a “cool” item also opens a child up to social interaction and acceptance among peers.

It is, as many have stated, a miracle, or at least as near of a miracle one can get in terms of assistive technology.

This is all very good; there is just one problem. The stories centers on Autistic children, ignoring the potential that this technology has to impact the lives of Autistic adults as well.

Now, I understand why the Autism community is so focused on children; teach skills early enough in life and a child has a supposed better outcome later in life. However, I think that the Autism community in its devotion has forgotten about the Autistic adults, the present ones who have grown up with and without the diagnosis, supports, and services that are available now; the adults our children will become.

I know of many Autistic adults who benefit from the use of apps, myself included.

Even before I discovered the iPod Touch and iPads, I’ve known how little devices helped me out. When I was a child, I used a Walkman on the long rides to my grandparents to ease motion sickness. As a teen, I realized I could use my Discman to block out unwanted sounds when I studied and provided me with my own “soundtrack” to keep me going.

In 2005, I received my first MP3 player, a 30GB iPod Video, which gradually started to go everywhere with me. I took it with me on my walk to class, as a way to keep from getting bored as a way to keep up a pace that got me to class on time. I listened to it while sitting in noisy lounges, food courts, and cafeterias to buffer out the wall of potential overload as I reviewed course materials and waited for my next class. I brought it with me to study, as up-beat music kept me engaged and energetic.

When I returned home from school, my iPod started to come with me during my family’s walks and long trips, to provide some sensory relief so I was able to interact even when strained to the max. As I settled into my new place in the city, I listened to it on the bus, and was able to go grocery shopping, fill out necessary forms, and go pay my rent because I had a musical buffer between me and the overwhelming world of intense sound. By occupying one sense, my other often-beaten senses could tolerate more, and I was able to do more.

For five years, I named my iPod my Personal Sanity Device and took it everywhere. Gradually, I began to pray over it that during this next trip, the battery wouldn’t mysteriously die, or the hard drive suddenly shut down. For five years, it hung on past its warrantee and expected battery life. Until this September.

This September, I looked at my long-lasting friend, and gave a deep sigh as it erased all of its memory on me for the last time. It was time, I decided, to get a new iPod.

And as it happened, I had a pretty good idea of what would be my next iPod, my new Personal Sanity Device, based on the reviews, news articles and feedback from people online.

As I’ve said before, the iPad, iPod, and other pocket computers, have great potential for assisting both autistic children and adults. The question is do we need to develop apps specifically for autistic adults, or can apps used by autistic children and non-autistic adults be used?

In some ways, this is what my blog the Autistic Adult App Project is trying to find out, whether already existing apps are suitable to meet the needs of autistic adults, and how affordable they are for people with a variety of incomes.

While I think that some existing apps are suitable and have their uses, I strongly suspect that there is a need for adult-specific apps, as adults have different needs than children. This isn’t to say that some apps designed for children can’t be used for adults, but rather that some of the subject material within those apps may not be appropriate for an adult, and may not even cover adult needs.

The way I see it, autistic adults do not need the same amount of social skills training and academic related apps as children. However, for those that require and want to develop more skills or work on specific areas of behaviour, the apps should be suitable to the maturity of the adult and allow them either work with a support worker, or self-direct, as per their desires.

For the most part though, I see apps not as a teaching tool, but as a supportive device for managing functional skills, organizing, dealing with stress, and as a means of communication. Sensory overload can be managed by a range of different apps, not to mention by an iPod’s original function: playing music. Text-to-speech and PECS-based apps may need some customizing for adult needs, but are capable of providing alternative communication for non-verbal autistics, or even for those moments of stress where verbal skills are temporarily lost.

Other organizational and productivity apps already exist, but can be used to become more independent in remembering appointments, when to take medications, reminders to bathe, eat, and other daily tasks. As there are versions designed for adults in mind, these may not require as much customization for autistic adults and the main hurdle is learning to use the apps efficiently.

Such apps may not completely eliminate the need for a support worker, but they open up new possibilities in terms of independence, and could that lessen how much a person needs a support worker. This is, of course, the main point of educating and helping children develop from an early age, so that they can be more independent and lead happy and engaged lives as a part of the community, to the best of their abilities.

It is my firm belief that it is possible to support autistic adults with a wide range of abilities and needs in this manner, and that the autism community should be assisting in the development of apps to be used on a long term basis. As we know, a person does not stop being autistic at adulthood, and often requires lifelong accommodations and supports. So when we look towards the future of current children, we should also be regarding the futures of current autistic adults, as a part of our community.

(This article was originally written and posted on the Thinking Person's Guide to Autism, and is reposted here with permission.
Also, while the article addresses Apple products specifically, it can be applied to any of the pocket-computer type phones and tablets in development and on the market with apps from other companies.)

Thursday, October 7, 2010

For the Health of It - Dalhousie and the Provincial Autism Centre

So I received this email from my sister-in-law, who is in New Brunswick working on her PhD. The Medical school she's at is a partnership between the University of New Brunswick and Dalhousie University, and every year, the Health Professions run a fundraising event for a different charity. This year, they're raising funds for the Provincial Autism Centre, and my sister-in-law thought I would be interested.

Here's the letter:
To whom it may concern:
Each year Dalhousie’s Health Professions put together a performance called For the Health of It with the purpose of raising funds for a chosen organization. During this performance each health profession prepares a 12 minute skit with acting, song and dance to tell the story of their role in healthcare. Funds for this event are raised through ticket sales, a silent auction the night of the performance, selling advertisement space in the program, and monetary donations. This year’s performance will be taking place on November 27th, 2010 at the Rebecca Cohen theatre.
This year the annual fundraiser has chosen to dedicate its proceeds to the Provincial Autism Centre is a non-profit organization dedicated to supporting individuals with autism, their families, educators, healthcare professionals and researchers throughout Nova Scotia.
The Provincial Autism Centre works on a day-to-day basis to provide information materials, research assistance, a variety of program opportunities and a friendly atmosphere to support our members in their desire to understand autism, and assistance to individuals with autism so that they can live full and rich lives.
Their latest project has been to provide a day camp this past summer for children with autism. Providing 1:1 camper-counsellor ratio. It worked to support children with higher support needs to enjoy a well-rounded summer camp experience - an experience that they would not be able to access at any other camp.
Today we are asking for donations to raise money for this great cause. There are a number of ways in which you can help to make this year’s fundraiser a huge success.
These include:
· Donating goods or services for our silent auction.
· Purchasing advertisement space in our program (Information regarding the purchase space is provided on an additional form.)
· Donating funds of any denomination.
Thank you in advance for your kind support!

Of course, I'd like to be able to give you more information about the Provincial Autism Centre. Included in the materials my sister-in-law sent me was a letter that includes a list of some of the programs the Centre provides and runs:

  • Operate the Provincial Autism Centre Library – the largest specialized resource library related to ASD in the Atlantic Provinces
  • Deliver the vibrant Autism Arts program in partnership with the Art Gallery of Nova Scotia
  • Provide Autism 101 information sessions upon request to community and professional groups
  • Host teen and adult social groups for people with ASD
  • Deliver Autism Works, a supported employment program to help young people on the Autism Spectrum to gain work experience which supports informed career choices later in life, and to support career success for teens and adults with ASD.
  • Facilitate yoga classes for adults with ASD
  • Publish Autistics Aloud – a newsletter written by and for people on the Autistic Spectrum
  • Facilitate gatherings that bring different professional groups and communities together
  • Host the Autistic Self-Advocacy Council-Nova Scotia – a group by and for adults on the Autism Spectrum with a mandate to provide access to good information about autism-related issues, educational opportunities and the chance to develop effective self-advocacy skills
  • Beginning in 2010, operate a summer camp to deliver a safe and rewarding experience to children with ASD

All of these seem, well, pretty nifty to me, so if you're in the Nova Scotia area, I highly suggest attending the performance on November 27th.

Tuesday, October 5, 2010

Adults Count Autism Survey

Not long ago, I heard about a survey being done by the Redpath Centre on the needs of Autistic Adults. Looking at the website, I see that the purpose of the survey is to gather materials in order to advocate for better services.  Curious and always willing to help out, I emailed them, and received this reply:

Thanks for your interest in the Adults Count! Survey which is being led by The Redpath Centre. We wanted to bring you up-to-date on the project.

The survey will launch later this month and will be available for completion until spring 2011. All surveys can be completed on-line unless you request a paper version. The information gathered will be used to understand the needs of adults living with Autism Spectrum Disorders in Ontario. It will take about 30 minutes to complete. There are three versions of the survey depending on who is completing it. It can be completed by:

(1) An individual 16 years old or older who has been diagnosed with an Autism Spectrum Disorder (i.e., “Autism”, “Autism Spectrum Disorder”, “High-Functioning Autism”, “High-functioning Pervasive Developmental Disorder”, “Pervasive Developmental Disorder, Not Otherwise Specified (NOS)” or “Asperger Disorder/Syndrome”) by a professional; OR

(2) A family member (e.g., sibling, parent) who is knowledgeable about the needs of a specific individual, 16 years old or older, diagnosed with an Autism Spectrum Disorder; OR

(3) A professional (e.g., group home worker, Adult Protective Service Worker, therapist) who is knowledgeable about the needs of a specific individual, 16 years old or older, diagnosed with an Autism Spectrum Disorder.
If you have not notified us already, please let us know what version you would like to complete.
We hope to have a large number of people complete the survey to ensure the results are as comprehensive as possible, so please forward this email to individuals who may be interested. They can express their interest by emailing us at: adult.survey@redpathcentre.ca.
Thanks again for your interest in this important project. If you have any questions do not hesitate to contact us.
Given the admirable goal of the survey, and the mission of the centre, I decided to pass this along for anyone who might be interested.