It has been a pretty intensive year, so busy that I think I missed the first anniversary of No Stereotypes Here!
About this time last year, the board of directors and myself at the Autism Women's Network was preparing to launch the website for the first time. Since then, it's been non-stop excitement working on various issues. I'm actually surprised I found time to blog and keep track of it all, especially with the new DSM drafts, our board members working with the White House, and the whole Pepsi refresh contest. It's a lot to try and keep up with and blog about.
As for my own events, it's been a little tipsy turvy, with two moves, the drama of new house mates, the usual fussing over medical issues, and my own personal studies.
In the beginning of this year, I had been studying in a Library and Information Technician program, but after all the blogging I've been doing, I decided to sit back, give myself a summer vacation, and think. I thought about being employed, and how much energy and resources that would cost me. I thought about trying to balance work with what I do the most, writing. Writing novels and writing about Autism.
And then I made another decision. I decided that I would be perfectly miserable if I could not write, and was not involved with Autism issues. And if I was miserable, I would be setting myself up to fail, crash and burn out, over and over again. And I do not like those experiences.
So I decided to dedicate myself more to Autism and disability issues, and to educate myself more. Because it's all good that I sit here and write my opinions and thoughts, and I hope that even that has made a difference for at least one person. But I'd like to try and make a large difference, because I see things that don't seem right, and I don't see anyone stepping up to change things for the better. And to do that, I need to know more things about how to make changes in my own country, province and town.
And so, I applied for the Disability Studies program at Ryerson University. Earlier this month, I was accepted and am preparing to take courses on-line, starting in January. For me, this is a big and exciting step towards being an active citizen, despite financial difficulties. I hope that I'll be able to share with all my readers the things that I'll be learning, and how I plan to apply them to practical use.
As the year draws to a close, I think back on what has happened on this blog over the year, the success of ASDay, and everyone I've met online. And I think about the year to come with hope that as good as this year has been, that next year will be even better!!!
Happy New Year everyone!
Friday, December 31, 2010
Saturday, December 25, 2010
Merry Christmas!
Two characters from my webcomic Amhelaki and I want to wish you all a Merry Christmas and a Happy New Year!
Friday, December 3, 2010
Recipes for Autism Hope
I'm going to be extremely honest; there are some things about myself I don't like, and one of them is how I'm still angry and hurt over the Autism Speaks "Autism Every Day" video, especially the parts with Alison Singer. However, I understand that she's changed, left Autism Speaks, and started the Autism Science Foundation. Recognizing this, I am working towards healing the hurt I feel and beginning the process to forgive her. I hope that one day I'll be able to fully forgive her, and I am very glad that I've made this decision.
Because really, there needs to be more science-based knowledge about Autism, and I think that the Autism Science Foundation plays a key part in "providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research" and contributing to Autism Awareness.
They consider strict scientific standards and values to be essential in Autism research. This is crucial to understanding Autism as it makes as sure as possible that the results are accurate, and better understanding means better approaches and supports in our communities. Truly, this is one of the best gifts that can be given to families and individuals on the Autism Spectrum.
Currently, ASF is raising funds with Recipes4Hope, and every dollar raised will go towards science-based Autism research dedicated to discovering better ways to recognize Autism and implement better supports and enhance the lives of Autistic persons.
Monday, November 29, 2010
Meeting the Autistic Artist
I don't think I've mentioned it a lot here, but I also do quite a bit of artwork, and sometimes I let people see my work. For the past month and a half, I've had a lot of my work at the Kerry's Place Autism Services Resource Centre in Belleville, Ontario, as part of the Spectrum Art Show. I kinda started the Show five years ago when I worked for KPAS.
Tomorrow, November 30th, I'll be at the Resource Centre from 2pm to 6pm for a "Meet the Artist" event. I'm being presented as an Autistic artist and Autism advocate.
If any of my readers are in the area, and have the time, it'll be awesome to meet some of you!
(yeah, a little last minute, I know. I'm sorry)
Tomorrow, November 30th, I'll be at the Resource Centre from 2pm to 6pm for a "Meet the Artist" event. I'm being presented as an Autistic artist and Autism advocate.
If any of my readers are in the area, and have the time, it'll be awesome to meet some of you!
(yeah, a little last minute, I know. I'm sorry)
Monday, November 22, 2010
Surviving the Holidays with Autism
Up here in Canada, we had our Thanksgiving back in October, so we're all getting ready for Christmas/Hanukkah/other winter holidays. I'm going to be very honest: I celebrate Christmas, so my default for the holiday season is Christmas. This doesn't mean that stuff I say cannot be used for other holidays, it's just a religious difference, use as need.
But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.
But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.
From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.
Social:
The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.
Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.
Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.
At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown", where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.
And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.
I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.
As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.
Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.
Sensory:
You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.
Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.
Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.
As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.
The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.
To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.
Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.
As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.
Schedule:
Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.
For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.
I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.
What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.
During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.
As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:
1) Don't do too much on any one day; usually one event per day is enough.
2) Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.
3) Keep clothes soft and comfortable.
4) Have quiet time, and let them know that it's quiet time, so that they can relax properly.
5) For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the candle, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)
6) Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.
7) Make sure that relatives and guests know the kid's needs.
8) Limit the amount of people coming over and in the house at any given time.
9) Have a safe place for your kid to withdraw.
10) If you have a large family gathering, rent a hall. But make sure to keep a safe corner.
11) Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.
12) Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.
13) If playing music in the background, have calm music and be careful of the volume.
14) When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.
15) If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.
16) Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc
If you have any questions about this list, or you think I've missed something, feel free to ask and comment.
Merry Christmas and Happy Holidays!
But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.
But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.
From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.
Social:
The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.
Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.
Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.
At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown", where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.
And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.
I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.
As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.
Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.
Sensory:
You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.
Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.
Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.
As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.
The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.
To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.
Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.
As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.
Schedule:
Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.
For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.
I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.
What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.
During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.
As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:
1) Don't do too much on any one day; usually one event per day is enough.
2) Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.
3) Keep clothes soft and comfortable.
4) Have quiet time, and let them know that it's quiet time, so that they can relax properly.
5) For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the candle, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)
6) Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.
7) Make sure that relatives and guests know the kid's needs.
8) Limit the amount of people coming over and in the house at any given time.
9) Have a safe place for your kid to withdraw.
10) If you have a large family gathering, rent a hall. But make sure to keep a safe corner.
11) Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.
12) Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.
13) If playing music in the background, have calm music and be careful of the volume.
14) When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.
15) If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.
16) Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc
If you have any questions about this list, or you think I've missed something, feel free to ask and comment.
Merry Christmas and Happy Holidays!
Monday, November 15, 2010
Preservating for Causes
While I'm pretty sure it can be annoying in some situations, preservating and being stubborn or determined can have some benefits. One being keeping at competing in contests for a long time, such as how the Autism Women's Network has kept in the Pepsi Refresh contest for so long.
Yes, I blogged about this some time ago; however, AWN did not make the top ten then, but since then has kept in the top 100 and kept in the running.
This month, AWN started at rank #5, and has slipped to #12. With the combined help and voting of the community, we can get back up into the top ten and finally be able to run the workshops and programs that this funding hinges on.
As a reminder of what AWN is planning to do with the money, here's the project profile on the Pepsi site.
Please help us to continue to support Autistic females who may not have access to supports and accommodations otherwise. The workshops may be a small step towards a greater change and difference in many women's lives.
Thank you very much.
(Please pardon the decreased quality of my writing in this post; I am having some communication difficulties today)
(Disclosure: Corina Becker is the Director of Networking for the Autism Women's Network. However, all opinions and views expressed on this site are solely the property of Corina Becker and does not reflect the official view of AWN and other organizations unless specifically stated. )
Yes, I blogged about this some time ago; however, AWN did not make the top ten then, but since then has kept in the top 100 and kept in the running.
This month, AWN started at rank #5, and has slipped to #12. With the combined help and voting of the community, we can get back up into the top ten and finally be able to run the workshops and programs that this funding hinges on.
As a reminder of what AWN is planning to do with the money, here's the project profile on the Pepsi site.
The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.
AWN's Project FAIM (Female Autistic Insight Mentoring) workshops will be the 1st of its kind.
We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications.
Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.)
The participants will meet renowned autistic females whereby gaining valuable insight.
We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.
Please help us to continue to support Autistic females who may not have access to supports and accommodations otherwise. The workshops may be a small step towards a greater change and difference in many women's lives.
Thank you very much.
(Please pardon the decreased quality of my writing in this post; I am having some communication difficulties today)
(Disclosure: Corina Becker is the Director of Networking for the Autism Women's Network. However, all opinions and views expressed on this site are solely the property of Corina Becker and does not reflect the official view of AWN and other organizations unless specifically stated. )
Thursday, November 11, 2010
Remembering
Today is Remembrance Day and as I browse through the blog posts and twitter updates, I've been thinking.
I come from a Mennonite family, and so am a pacifist. I don't believe in war or that killing people is the answer to problems. I believe that a peaceful resolution is possible, and will work towards reaching that goal. And so, alongside a poppy, I don a button that reads "To remember is to work for PEACE".
It's a reminder that today, we don't just honor our veterans, but also acknowledge the goals to which our veterans made sacrifices for, the purpose in which they serve. Not only to protect us from potential physical harm, but to defend our rights and freedoms and the rights and freedoms of people all over the world.
Because when we remember war on this day, we remember the horrors of war. The rape, the torture, the mass murders of ethnic groups and the disabled.
We remember them as well, and we say "never again".
Never again will we silently witness the atrocities that occurred in the past.
But we're not done yet, are we? There are still wars going on, there is still people being discriminated against, people being abused, tortured, raped and murdered for no good reason. And there's really no justification for any of it. But as long as there is injustice, as long as there is hate, as long as every man, woman and child of every background and origin (and I mean, EVERY) cannot feel safe everywhere, we're not done yet.
And so, for the sacrifices of the past, the sake of the present and the hopes of the future, today we remember what has gone on before, in order to work for peace.
(this post was actually a little hard to write. I keep remembering my grandparents, Oma and Opa. They survived WWII in Russia. From what we know, Opa was drafted by gunpoint first by the Russian army, and then the German army before running away and surrendering to the American army. Oma apparently walked across Russia to follow the German army out of the country. They met in a refugee camp. Opa had apparently been engaged to another woman, but couldn't find her, and so married Oma. They moved to Canada when my Dad was 2 years old. That's what we know. They wouldn't say more and records from then are scattered and incomplete. Honestly, from what I do know, I can't blame them for not talking about it.)
Saturday, November 6, 2010
What #ASDay Meant to the Autism Community
Jeanne Holverstott has written an awesome post on Autistics Speaking Day, from the perspective of a service provider. With her permission, I've reposted it here.
Now that there is some distance and time from November 1, 2010, Autistics Speak Day, I have had time to reflect and put the experience in context.
In many ways, #ASDay was really any other day. Each person who moderated (thank you to the @TheCoffeeKlatch for allowing me to do so) and who participated in the Tweet chat brought their thoughts, feelings, experiences, two cents, and expertise. For those who are on the spectrum (i.e. @TMBMT, @CorinaBecker, @Heather_Sedlock), #ASDay was a moment in the spotlight. Not the interrogation spotlight that makes your heart race and your body sweat. Rather, the sharing spotlight, the all-eyes-on-you and what you say because this is a time to learn.
While listening to those in spotlight, I was amazed to read many Aspies and auties continually reminding everyone that their personal experiences captured their perspective but did not speak for the entire community. As the old saying goes: If you’ve met one person on the spectrum, you’ve met one person on the spectrum.
I was amazed by this contextualizing of personal experiences because it allowed the space for all voices to be heard equally. When I think about the public persona of ASD (a topic I’ve mentioned in my blog post, “Keep Your Clothes on, Jenny; Autism is Better than That”), Temple Grandin is the most well-known person on the spectrum. Many NTs use her as the paradigm for all experiences with ASD. #ASDay was in direct contrast. I spoke to many individuals on the spectrum who shared their life’s story while knowing it was only representative of their particular color on the spectrum. In so doing, they encouraged me to seek out others and ask, beg, and plead for their opinions on a particular subject, too. Crudely, I could compare it to a chili cook-off: Taste all the flavors. But, don’t pick just one. Get all of the recipes and savor them all.
I can only imagine what this day meant to individuals on the spectrum. I felt like part of a larger community that was often silenced and misunderstood. I tweeted as an “autism specialist” and had my spectrum of knowledge broadened (pun intended), but this is a selfish perspective. Those individuals on the spectrum, who countered the idea of being silent for a day to increase awareness (Communication Shutdown), were the main characters. And they were gracious, well-intentioned, determined, and respectful. They shared their day-to-day experiences in ways that people take for granted and can’t even begin to fathom.
#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories.
I am glad I read a few pages.
Now that there is some distance and time from November 1, 2010, Autistics Speak Day, I have had time to reflect and put the experience in context.
In many ways, #ASDay was really any other day. Each person who moderated (thank you to the @TheCoffeeKlatch for allowing me to do so) and who participated in the Tweet chat brought their thoughts, feelings, experiences, two cents, and expertise. For those who are on the spectrum (i.e. @TMBMT, @CorinaBecker, @Heather_Sedlock), #ASDay was a moment in the spotlight. Not the interrogation spotlight that makes your heart race and your body sweat. Rather, the sharing spotlight, the all-eyes-on-you and what you say because this is a time to learn.
While listening to those in spotlight, I was amazed to read many Aspies and auties continually reminding everyone that their personal experiences captured their perspective but did not speak for the entire community. As the old saying goes: If you’ve met one person on the spectrum, you’ve met one person on the spectrum.
I was amazed by this contextualizing of personal experiences because it allowed the space for all voices to be heard equally. When I think about the public persona of ASD (a topic I’ve mentioned in my blog post, “Keep Your Clothes on, Jenny; Autism is Better than That”), Temple Grandin is the most well-known person on the spectrum. Many NTs use her as the paradigm for all experiences with ASD. #ASDay was in direct contrast. I spoke to many individuals on the spectrum who shared their life’s story while knowing it was only representative of their particular color on the spectrum. In so doing, they encouraged me to seek out others and ask, beg, and plead for their opinions on a particular subject, too. Crudely, I could compare it to a chili cook-off: Taste all the flavors. But, don’t pick just one. Get all of the recipes and savor them all.
I can only imagine what this day meant to individuals on the spectrum. I felt like part of a larger community that was often silenced and misunderstood. I tweeted as an “autism specialist” and had my spectrum of knowledge broadened (pun intended), but this is a selfish perspective. Those individuals on the spectrum, who countered the idea of being silent for a day to increase awareness (Communication Shutdown), were the main characters. And they were gracious, well-intentioned, determined, and respectful. They shared their day-to-day experiences in ways that people take for granted and can’t even begin to fathom.
#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories.
I am glad I read a few pages.
Tuesday, November 2, 2010
The Success of Speaking
[Nov 24, 2010 Update: updated the list of participant blogs]
Yesterday, November 1, was Autistics Speaking Day, and it was a resounding success!! I am completely speechless trying to describe it; I keep using the words "incredible" and "awesome", but truly these are weak words to accurately express it. The responses and contributions from everyone greatly exceeded my expectations.
I will be honest, when I proposed Autistics Speaking Day, I thought that at best it would be myself and a few others, tweeting on Twitter and maybe putting up a few blog posts. And when the criticisms came in, with people saying that much wouldn't happen, so why bother, I thought of two things. The two things that leads me to be active in the Autism and Disability communities.
I thought "Well, it might not reach too many people, but it's worth it if I can make even a little difference in someone's life."
And then I thought, "Well, you don't know that for sure, so what's the harm in me trying?"
Hope for the best, expect the worst, and be pleasantly surprised. And I was totally surprised. I don't think I have ever been so pleased to be so wrong before. It was great to see and hear everyone online. I want to thank everyone for their hard work.
I've gotten messages of people thanking me for putting ASDay together, but I don't think that's right. I don't deserve all of the credit. Yes, I thought of holding a counter to Communication ShutDown, and I thought of the name, and I nearly spammed Twitter getting the word out and explaining it. But on the day itself, what did I do? I did what everyone else participating did, I posted a blog entry, and shared my experiences with others.
I did not do it all; I do not deserve all the praise for the success of ASDay.
It was Kathryn Bjørnstad who started both Facebook groups, the event page, and the more permanent page. It was Melody Latimer that, when we were looking for a shorter Twitter hashtag, suggested #ASDay. It was Kim and Kathleen on the Autism Blogs Directory, Rachel Cohen-Rottenburg at Shift Journal and others getting the word out. It's LizDitz for following all the responses, posts and media attention. It's all sorts of people covering it in the news. It's the Coffee Klatch for hosting such an amazing conversation on Twitter. It was all the parents and professionals who took the time to listen, and supported us.
And most of all, it was every single Autistic person who joined in and participated. It couldn't have happened without any of you.
I am only one person, but together, we are a community of voices. I hope that ASDay was informative for many, and that the day inspired not only parents and professionals, but Autistics to be involved in processes and decisions that ultimately affect us. We should not be silent when we have something to say. And certainly, we weren't on November 1st.
Right now, I want to acknowledge all the participants and contributers who wrote blogs, all their hard work that made ASDay a success. November 1st was your day.
(The following list was made possible by Kathryn)
34. John Elder Robinson posts his support here. http://www.facebook.com/JohnElderRobison
38. Julian Edward Frost posts on his own experience with autism. http://autismjungle.wordpress.com/2010/11/01/autistics-spoke-and-you-listened/
50. Maddy Keene on her experience with autism/Asperger’s. http://mmkeene.deviantart.com/journal/35987525/
75. Zachary Lassiter on why many autistic people won’t be participating in Communication Shutdown. http://www.youtube.com/watch?v=2HwgbMTmR3I
76. I missed Nick Walker's post before, but here it is now. http://nickykaa.com/2010/11/an-autistic-speaking/
77. Also missed Jo's blog post here about the difficulties she has encountered raising a son with Asperger's. http://mumtoj.wordpress.com/2010/10/27/an-explanation/
78. Wendy on alt med, food allergies, and other things. http://raisingbutterfly.blogspot.com/
79. Spectrummy Mummy on her experiences with Autistics Speaking Day. http://spectrummymummy.wordpress.com/2010/11/02/an-ongoing-dialogue/
Please, if we've missed a post, let us know! We want to acknowledge and thank each person who contributed. You all are awesome!
Yesterday, November 1, was Autistics Speaking Day, and it was a resounding success!! I am completely speechless trying to describe it; I keep using the words "incredible" and "awesome", but truly these are weak words to accurately express it. The responses and contributions from everyone greatly exceeded my expectations.
I will be honest, when I proposed Autistics Speaking Day, I thought that at best it would be myself and a few others, tweeting on Twitter and maybe putting up a few blog posts. And when the criticisms came in, with people saying that much wouldn't happen, so why bother, I thought of two things. The two things that leads me to be active in the Autism and Disability communities.
I thought "Well, it might not reach too many people, but it's worth it if I can make even a little difference in someone's life."
And then I thought, "Well, you don't know that for sure, so what's the harm in me trying?"
Hope for the best, expect the worst, and be pleasantly surprised. And I was totally surprised. I don't think I have ever been so pleased to be so wrong before. It was great to see and hear everyone online. I want to thank everyone for their hard work.
I've gotten messages of people thanking me for putting ASDay together, but I don't think that's right. I don't deserve all of the credit. Yes, I thought of holding a counter to Communication ShutDown, and I thought of the name, and I nearly spammed Twitter getting the word out and explaining it. But on the day itself, what did I do? I did what everyone else participating did, I posted a blog entry, and shared my experiences with others.
I did not do it all; I do not deserve all the praise for the success of ASDay.
It was Kathryn Bjørnstad who started both Facebook groups, the event page, and the more permanent page. It was Melody Latimer that, when we were looking for a shorter Twitter hashtag, suggested #ASDay. It was Kim and Kathleen on the Autism Blogs Directory, Rachel Cohen-Rottenburg at Shift Journal and others getting the word out. It's LizDitz for following all the responses, posts and media attention. It's all sorts of people covering it in the news. It's the Coffee Klatch for hosting such an amazing conversation on Twitter. It was all the parents and professionals who took the time to listen, and supported us.
And most of all, it was every single Autistic person who joined in and participated. It couldn't have happened without any of you.
I am only one person, but together, we are a community of voices. I hope that ASDay was informative for many, and that the day inspired not only parents and professionals, but Autistics to be involved in processes and decisions that ultimately affect us. We should not be silent when we have something to say. And certainly, we weren't on November 1st.
Right now, I want to acknowledge all the participants and contributers who wrote blogs, all their hard work that made ASDay a success. November 1st was your day.
(The following list was made possible by Kathryn)
The participants:
1. Action for Autism’s Mike Stanton explains why Communication Shutdown is offensive, and what it is like when autistic people shut down in real life. http://actionforautism.co.uk/2010/11/01/today-is-autistics-speaking-day/
2. Alexander Cheezem writes an awesome open letter to Buzz Aldrin. http://aspieperspective.blogspot.com/2010/11/open-letter-to-buzz-aldrin.html
3. Allecto on dispelling myths about autism. http://allecto.tumblr.com/post/1456668266/autisticsspeaking
4. Alysia Krasnow Butler on her own son’s autism diagnosis and her friend’s son’s recent unexpected diagnosis. A beautiful post. http://trydefyinggravity.wordpress.com/2010/10/31/voices-carry/
5. Amanda Forest Vivian on problems with the kinds of things non-autistics are trying to “fix” in autistic people. This is really awesome and you should read it if you’re not familiar with the concepts of “ableism” and why it’s not necessary or even beneficial to “pass” for non-autistic. http://adeepercountry.blogspot.com/2010/11/autistics-speaking-day-post.html
6. Ari Ne’eman from the Autistic Self-Advocacy Network on Communication Shutdown and Autistics Speaking Day. http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=122
7. AS Parenting has an awesome article on autism (including nonverbal autism) and advocacy. http://www.asparenting.com/2010/11/01/asd-autistics-speaking-day/
8. ASD Mommy-I don’t know this blogger’s name, but it is a good post. http://asdmommy.wordpress.com/2010/11/01/i-will-not-be-silent/
9. A.S.S.G.O. (AS Support Group Online)’s post for Autistics Speaking Day. http://www.assupportgrouponline.org/apps/blog/show/5212238-supporting-autistics-speaking-day
10. Bev from Asperger Square 8 on communications and other things. http://aspergersquare8.blogspot.com/2010/11/squawk.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+blogspot%2FZooX+%28Asperger+Square+8%29
11. Brigy Staples on the double standards people use with autistic people. http://speakingon.wordpress.com/2010/11/01/autistics-speaking-day/
12. Britt Kravets on social interaction and acceptance for the whole spectrum. http://blackbird3398.wordpress.com/2010/11/01/autistics-speaking/
13. Clay on Autistics Speaking Day; also contains Ari Ne’eman’s post. http://cometscorner-clay.blogspot.com/2010/11/ari-neeman-on-autistics-speaking-day.html
14. Codeman busting myths about autism. http://aut.zone38.net/2010/11/01/speaking-up-for-autism/
15. The Coffee Klatch on their Twitter event, which you should totally check out if you have Twitter. http://thecoffeeklatchblog.blogspot.com/
16. Corabelle Li Crol on the power of the Internet and autistic people. http://aspiegirlworld.blogspot.com/2010/11/autistics-speaking-day-post.html
17. Corina Becker’s guest blog on things she knows as an autistic person, and her post on her own blog for Autistics Speaking Day. http://blogs.plos.org/neurotribes/2010/10/31/corina-becker-communication-shutdown-for-autism-awareness-no-thanks/ http://nostereotypeshere.blogspot.com/2010/11/autistic-speaking-out-loud.html
18. Craig Thompson posted a video about autism and communication. http://www.youtube.com/watch?v=5wEO2oJ-qKc
19. Cripchick (Stacy Milbern) on the dangers of donating to non-profit autism organizations that are all about profit and do nothing for autistic people. http://blog.cripchick.com/archives/8612
20. Danillion on the Internet and autism. http://dannilion.com/2010/11/autistics-speaking-day-autism-communication-and-the-internet/
21. Darcy Reed is an autistic writer who writes beautiful poetry. http://spectrumhouseart.com/5Darcy1.html
22. Ed Ised had posted some things that I don’t quite agree with but his voice deserves to be heard as much as anyone’s. http://www.facebook.com/l.php?u=http%253A%252F%252Fdiversityrules.typepad.com%252Fmy_weblog%252F2010%252F11%252Fowning-ideas-and-selling-autism-awareness.html&h=2ff90&ref=nf
23. Elaine Caul on awareness. http://one-autistic-in-ireland.blogspot.com/2010/11/but-you-look-normal.html
23. Elaine Caul on awareness. http://one-autistic-in-ireland.blogspot.com/2010/11/but-you-look-normal.html
24. Elspeth Thorne on growing up with autism. http://ysabet.thorne.id.au/2010/10/on-growing-up-as-alien-robot-among.html
25. Emily on autism and bullying. http://daisymayfattypants.blogspot.com/2010/11/autism-and-bulling.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+blogspot%2FZgJi+%28A+life+less+ordinary%3F%29
26. Estee Klar on the dangers of trying to normalize autistic people with medication. http://www.esteeklar.com/2010/11/01/what-are-the-lies-we-believe/
27. Gavin Bollard on why a day of silence doesn’t work. http://life-with-aspergers.blogspot.com/2010/11/day-of-silence.html
28. Gaynell on the harm that society has allowed to be done to autistic people, particularly on physical abuse and restraint. This is an important issue in the community right now. http://wildflowersforjade.blogspot.com/2010/11/autistics-speaking-day-autism-mom.html
29. Gerry Lockhart on ASDay. http://www.asandtheirpartners.org/as-resources/16-interesting-articles/333-autistics-speaking-day.html
30. Heather Sedlock on her autistic son’s life. http://heatherbabes.autisable.com/734878474/thom-part-2/
31. Ian on his experiences with autism. http://youhaventmetyourselfyet.blogspot.com/
32. Jennefer explains what she would like people to know about her three-year-old autistic son, referred to here as HRH. http://www.thekingandeye.com/2010/11/communications-shutdown-day-for-autism.html
33. Jill with some general info on autism and ASDay. http://bookish-nerd.livejournal.com/13273.html
34. John Elder Robinson posts his support here. http://www.facebook.com/JohnElderRobison
35. John Scot Thorburn on how autistic voices should be heard. http://colorvalues.blogspot.com/2010/11/autistics-speaking-day.html
36. Julia on needing to talk. http://flashbackdreamsequence.blogspot.com/2010/11/we-need-to-talk.html
37. Julia Charlotte’s Anatomy of an Autistic. http://www.facebook.com/notes/julia-charlotte/anatomy-of-an-autistic/464893465232
38. Julian Edward Frost posts on his own experience with autism. http://autismjungle.wordpress.com/2010/11/01/autistics-spoke-and-you-listened/
39. Karen Baum writes her first blog post on Autistics Speaking Day, for which I am honored. http://theautisticstepmom.blogspot.com/2010/11/autistics-speaking-day.html
40. Karin has written several posts for today, which can be viewed here: http://bewaretheaspie.blogspot.com/
41. Kassiane on what she can tell you and explain about living with autism, and being on your autistic kid’s side. http://timetolisten.blogspot.com/2010/11/inaugural-post-autistics-speak-day.html and http://timetolisten.blogspot.com/2010/11/im-on-your-kid.html
42. Kathleen on autistic people and communication. http://autismherd.blogspot.com/2010/11/autistic-people-communicate.html
43. Kathryn Bjornstad writes about Autistics Speaking Day and shares a list of participants. http://autistickat.blogspot.com/2010/11/autistics-speaking-day-is-today.html
44. Kerry Cohen on her autistic son, who she has written a memoir about. http://www.kerry-cohen.com/musings.html
45. Kevin Healey shares the voices of autistic people. http://www.kevinhealey.net/?p=1056
46. Kim Wombles on supporting autistic people instead of shutting down. http://kwomblescountering.blogspot.com/2010/10/supporting-autistics-whoever-they-are.html
47. Leah Jane on how the Internet made it possible for her autism club to pull off a successful event. http://quixoticautistic.blogspot.com/2010/11/autistics-speaking-day.html and on the aftermath of ASDay http://quixoticautistic.blogspot.com/2010/11/aftermath.html
48. Lindsay on listening to disabled people. http://autistscorner.blogspot.com/2010/11/stop-look-and-listen-its-autistics.html
49. Luna Lightning on her own experiences with autism and life in general. http://spin-infinity.blogspot.com/2010/11/introduction.html
50. Maddy Keene on her experience with autism/Asperger’s. http://mmkeene.deviantart.com/journal/35987525/
51. Matt Friedman explains how social media has helped him and why autistics must speak for themselves. http://dudeimanaspie.blogspot.com/2010/11/autistics-speaking-day-path-to.html
52. Maya Brown-Zimmerman on battles with the early intervention system. http://marfmom.com/archives/2656
53. Melissa Fields on not feeling welcome in the non-autistic world. http://iamautistic---thisismylife.blogspot.com/2010/10/autistic-i-am.html
54. Nicole Nicholson shares an awesome poem with us for Autistics Speaking Day. She is also sharing other poems, so check them out. http://ravenswingpoetry.com/2010/11/01/wwp-poem-26-back-door-blues/#more-2517
55. Ole Ferme L'Oeil on the wide range of people in the autism spectrum; also includes some awesome links to other important blog posts that you should check out. http://humainsvolants.blogspot.com/2010/11/autistics-speaking-day-jour-de-parole.html
56. Pamela Harvey on the use of silence. http://thestampedenvelope.blogspot.com/2010/11/using-silence.html
57. Paula C. Durbin-Westby shares her e-mail to Buzz Aldrin about Communication Shutdown and Autistics Speaking Day. http://paulacdurbinwestbyautisticblog.blogspot.com/2010/10/facebook-message-to-buzz-aldrin.html
58. Rachel Cohen-Rottenberg on empathy and communication. http://www.journeyswithautism.com/2010/11/01/speaking-my-mind-and-heart/
59. Sandy challenges the idea that verbal communication is the best form of communication. http://www.aspieteacher.com/2010/11/press-pound-for-more-options/
60. Sarah Schneider on Autistics Speaking Day. http://www.kitaiskasandwich.com/2010/10/31/autistics-speaking-day-november/ and http://bit.ly/dkFBp4
61. Savannah posts poems about her experiences with autism. http://crackedmirrorinshalott.wordpress.com/2010/11/01/poem-articulate/
62. Scottish Mum on why Communication Shutdown is not for her. http://scottishmum.com/?p=85
63. Shanti writes about her life, selective mutism, and her obsessions. http://latedx.wordpress.com/2010/10/31/celebrating-autism/
64. Shelly Valladolid on autistic special interests and their validity. I don’t know a better way to put it; it’s a short but good post. http://stillfabulous.blogspot.com/2010/11/fab-speaks.html
65. Socrates from the New Republic on Autistics Speaking Day. http://the-newrepublic.blogspot.com/2010/11/autistics-speaking-day.html
65. Socrates from the New Republic on Autistics Speaking Day. http://the-newrepublic.blogspot.com/2010/11/autistics-speaking-day.html
66. Stuart Duncan on breakdowns in communication. http://www.stuartduncan.name/autism-communication/communication-breaking-it-down/
67. Sunday Stillwell writes an informative post on Autistics Speaking Day. http://www.extremeparenthood.com/2010/11/autism-shoutout-loud-and-proud.html
68. Sullivan from Left Brain/Right Brain will be returning to Facebook today. http://leftbrainrightbrain.co.uk/2010/11/catch-me-on-facebook-november-1/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+LeftBrain%2FrightBrain+%28Left+Brain%2FRight+Brain%29
and here http://leftbrainrightbrain.co.uk/2010/11/autistics-spoke-and-you-listened/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+LeftBrain%2FrightBrain+%28Left+Brain%2FRight+Brain%29
69. TMBMT on the pain of growing up undiagnosed. http://tmbmt.livejournal.com/26305.html
70. Tony Belcastro writes about what autism is like for him and how it has affected his life. http://elsmystery.com/index.php?option=com_content&view=section&layout=blog&id=3&Itemid=43
71. Toxicology Doc on communication. http://www.youtube.com/watch?v=idszVltvc3Y
72. Unstrange Mind on what you would have to do to really understand how her autism affects her. Hint: it’s not turning off your computer. http://unstrangemind.wordpress.com/2010/11/01/will-turning-off-your-computer-for-one-day-teach-you-what-its-like-to-be-autistic/
73. The Untoward Lady on autism and love. http://vibratingsquare.blogspot.com/2010/11/reclaiming-love.html
74. Vector’s post for ASDay. http://thautcast.com/drupal5/content/voices-autistics-speaking-day-alex-olinkiewicz
75. Zachary Lassiter on why many autistic people won’t be participating in Communication Shutdown. http://www.youtube.com/watch?v=2HwgbMTmR3I
76. I missed Nick Walker's post before, but here it is now. http://nickykaa.com/2010/11/an-autistic-speaking/
77. Also missed Jo's blog post here about the difficulties she has encountered raising a son with Asperger's. http://mumtoj.wordpress.com/2010/10/27/an-explanation/
78. Wendy on alt med, food allergies, and other things. http://raisingbutterfly.blogspot.com/
79. Spectrummy Mummy on her experiences with Autistics Speaking Day. http://spectrummymummy.wordpress.com/2010/11/02/an-ongoing-dialogue/
80. Elesia Ashkenazy's ASDay post. http://aspitude.blogspot.com/2010/11/autistics-speaking-day-2010.html
The Media:
There are some other lists here.
Please, if we've missed a post, let us know! We want to acknowledge and thank each person who contributed. You all are awesome!
Monday, November 1, 2010
Autistic Speaking Out Loud!
I've been thinking about what to post here for today, shifting through all my memories and experiences. To be honest, I'm pretty sure I could write a book covering it all. But the problem is always where to start.
I've had my share of troubles through life, and I still do and will have troubles. But I won't dwell on them or indulge in self-pity. Life is full of difficulties, and we all have our own specific difficulties.
So instead of concentrating on negative aspects, I choose to focus on my strengths and skills. One of these strengths is writing, and expressing myself through writing. Since 2009, I have been writing on this blog about Autism, and so for Autistics Speaking Day, I am listing some of the posts that I feel are some of my best work.
If people participating in Autistics Speaking Day would like to comment with their contributing blog posts or other forms of communication, please do so. I would love to see your words.
Explaining Asperger's as Autistic
On Neurodiversity
Regarding Success
Self Advocacy and Disability
Spoons, Batteries and Autism
Blogging as Communication
Language, Disability, and Injustice
The Triggering of Dr. Wakefield
The Propsed DSM-V Changes: Is it a Step in the Right Direction?
What I Want People To Know
The Perspectives of Luck and Autism
I can't say this enough; thank you all very much for your support and participation. By sheer response, this day has been successful beyond measure, and it is all due to your hard work and contributions.
Thank you, thank you, thank you all.
And here's to raising Autism Awareness and working towards a better future for all.
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.
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?
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.
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.)
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:
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.
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.
Wednesday, September 29, 2010
Regarding Kate Winslet and the Golden Hat
gee, that sounds like a movie or something.... anyways, I had this late night discussion on twitter the other night, and found that I was having trouble expressing myself in 140 characters. It probably did not help that I think the person whom I was conversing with may have been mistaking the topic of some of the other some-what related conversations, with the topic we were discussing. So I made this post on tumblr, to try and clear things up, and decided to share it here.
There you go, my opinion on the matter, so far. And of course, since it is an opinion, I have the right to change my mind at a later date. I expect that I'll be letting everyone know if I do.
Explaining it a bit for all the folks on twitterHaving a bit of an interesting conversation on twitter that’s getting hard to do with only 140 characters. So I thought I’d do a break down of my reaction to Kate Winslet’s Golden Hat Foundation.
1) I am a touch jealous, because here is someone seemingly effortlessly set up a foundation to do just the good that many of us in the autism community have been struggling to do. Just a touch. Enough that I need to admit it, but not enough to blind me from the fact that yes, this woman has the connections and resources to make it happen.
2) A bit pissed off at the traces of martyr-parent of autistic child that I’m seeing in the mass media. This is compounded into RAGE over the fact that I have been discussing the rather disgusting fundraising depictions of autism that some orgs use, and ways to protest and ways to describe the depths of my feelings about it.
3) a bit worried. Oh yes, she has the potential to do fabulous things, and maybe the Autism Women’s Network can get in contact with her and we can do partnership things and get supports for under-diagnosed and under-supported autistic women and this will be AWESOMENESS. and I really really really really really really really really really really hope that this is the case. But I gotta keep myself grounded; there is the possibility, however far-fetched, that she might turn down the woo-trail and make more work for us self-advocates. So far, it looks like this isn’t the case, but the foundation has just begun, and sometimes weird stuff happens.
So no, I haven’t actually JUDGED Winslet yet (although I absolutely hated Titanic, but that’s not exactly her fault), although I have started picking through all the language on the website and I have faulted the media for its child-focused approach to autism. There are some pieces that are picking up the slack and including autistic adults, but we still have a long road to go.
Also, the fact that the only faults I can find on the site is that she lists Autism Speaks as a resource. But she also gains points by listing some very good research on autistic intelligence (done in Canada too, yay Canada!).
So as things go, nothing’s set yet, and I’m just waiting to see, and sprouting out my opinions online.
There you go, my opinion on the matter, so far. And of course, since it is an opinion, I have the right to change my mind at a later date. I expect that I'll be letting everyone know if I do.
Subscribe to:
Posts (Atom)