The Perspectives Anthology

I'm pleased to announce that the Perspectives Anthology: Poetry Concerning Autism and Other Disabilities is now available through Lulu.com.  The anthology is part of the Bards Initiative, in partnership with the Local Gems Press, which has this to say about the book: 

With poetry from over 50 poets, the Perspectives Anthology through the art of poetry, conveys different points of view or perspectives concerning the autism spectrum and other neurological, psychological, social, and communicative disabilities. The poems in this volume are from those with disabilities, by those with disabilities, about those with disabilities, as well as from the point of views of family and friends of those affected. Perspectives hopes that its poetry will convey not only understanding, but unity, and a sense that despite different perspectives and different ways of living life, we are all human. (source)

 Of course, while I very pleased with the project and anthology, I do have to disclose my own other interests in promoting it: I do have three poems in the anthology, looking at expressing the emotions of being autistic and disabled in the greater community. I do not, however, receive any compensation for any profits made from the book.

I submitted my work to the anthology because I agree with the mission of the project and felt that I could contribute my voice through my poetry.  From the reviews coming in about the anthology, it seems that we have accomplished our goal in creating a book illustrating the perspectives of people in the autism community, from autistics to parents and caregivers, in how we truly feel about ourselves and our place within the community.

Now we just need to spread our words to the world, and you can help by ordering a copy yourself.  Maybe after you've read it, you can donate it to a local library so that others can read it as well. 

Last Day to Vote, the Big Push!!

from the email sent out by AWN
I was notified only moments ago that approximately 150 contestants in the Pepsi Refresh Contest have banned together & decided to make a last minute run for a spot as a finalist in the Top 100 so they can be carried over to next month's Pepsi Grant Contest. This means that 150 people have formed an alliance ...to get into the Top 100 and boot Autism Women's Network along with other Top 100 contestants OUT!!!


Please VOTE now if you haven't cast your daily vote today!! This contest is not over until midnight!!


I am asking that all of our supporters tweet, facebook and network everywhere throughout the afternoon & tonight - requesting our friends, and followers to cast their final August VOTE for us now. If not, AWN can very easily find ourselves out of the TOP 100 by midnight. We already dropped to #67 in the past 30 minutes!

http://www.refresheverything.com/awn

(disclaimer: Corina is Director of Networking for the Autism Women's Network)

Puzzle-less Autism Awareness Ribbons

For the longest time, I've been bothered about the autism awareness ribbons and other products displaying puzzle pieces. As a lot of autistics say when we object to it, we are not puzzle, we are people. So, since I've been aware of why it is offensive, I've been avoiding using it for any autism-related images.

Except my Anti-puzzle graphics for protesting Autism Speaks and other organizations.

However, I wanted an autism awareness ribbon that anti-puzzle autistics and other community members could display and use. So I made one, using the concept of my Neurodiversity infinity mobius and the spectrum part of Autism Spectrum.

[Edit April 2, 2013]

!!!!!!!STOP AND READ BEFORE YOU USE!!!!!!!

PLEASE READ THE CONTENTS OF THIS BLOG BEFORE YOU USE!!!

I am neurodiversity/Autism rights advocate; I do not support Autism Speaks, Age of Autism or any theories regarding Autism that is not based on science-based research.

Anything regarding cause and vaccines, toxins, chelation, HBOT, etc, is NOT SUPPORTED ON THIS BLOG AND THEREFORE, NOT GIVEN PERMISSION TO USE MY IMAGES, INCLUDING MY RIBBONS

If you use my ribbons and images, please credit them to me.  Failure to do so, and failure to support autistic-perspectives and rights with how you use my images will result in my retracting permission to use all of my images, including my autism awareness ribbons.  

Automatically, if you support Autism Speaks, you do not have permission to use my images. 

This images are for Autism Awareness, Acceptance, and Neurodiversity.  If you are confused whether the way you will use them fits this, please READ THE CONTENTS OF THIS BLOG BEFORE USING!!!!!

Thank You [/edit]

Actually, I made two, and I've uploaded them so that people may use them freely. Also, I've made some shirts, car stickers and other products using the design, available on my zazzle store. (all proceeds goes towards my tuition fund; I'm applying to the Disability Studies program at Ryerson University, and it kinda costs a lot for someone on social assistance). The textless are below.

Lauren's Hope Review

For quite a while, I had been wanting to get a medical ID bracelet.  An Autism card is good for events where, having trouble communicating, a person can slip out a card and hand it out.  For other situations, when I'm possibly unconscious, I want something on me all the time that's noticeable to paramedics.  Especially when I consider the medical issues I have and medications I'm on.

I've looked at medical ID bracelet companies, including the ones with the yearly subscription so that you practically have your medical history a phone call away.  I've looked at some rather fancy bracelets, some completely plain and utilitarian bracelets, and they were all either too much money or not what I wanted to wear on my wrist every single day.

But then I came across Lauren's Hope  and was genuinely surprised.  The bracelets are a bit expensive, especially for someone with limited funds, but are elegant and beautiful. They are designed so that you only need one tag that you can remove and use with many different bands.  Yes, space is limited on the tag, and you'd have to replace it every time that your medications get changed, but it's a lot cheaper than subscribing to a medic-alert type service.

I love my Lauren's Hope medical ID bracelet, and I hardly ever take it off.  So I highly recommend it; at least take a look, you might find something that catches your eye!

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Pepsi Refresh and The Larger Difference

It sometimes takes small steps in order to make a larger difference in the world. Small events, such as a stone falling into water, can create larger reactions that ripple outward to have a larger effect, either in the community, or even the entire world. Thus, we are never able to completely disregard even the smallest action.

In this case, I think that this is a recognizable starting point for a greater change. What am I talking about? Well, Pepsi Co is engaged in a wide-scale promotional campaign called Pepsi Refresh Project, that is this humongous contest to do two things: one, to brainstorm ideas to aid the Gulf Coast oil spill, and two, to provide various grants to the top ten voted individual, businesses and non-profit organizations, per category.

Among the contenders this month, the Autism Women's Network takes its first greater steps towards making a larger impact and being recognized as a non-profit organization. As part of its mission to provide support to previously under served autistic females, AWN is competing with 1234 other competitors for a $50,000 grant. With the grant, the AWN plans to run Project FAIM (Female Autistic Insight Mentoring) workshops, pay for legal fees to gain non-profit status, and pay for maintenance costs for the website and online supports.

Most of the grant will be to run Project FAIM, which includes costs for materials, transportation, and rent space. The workshops will be held in five locations across the US, and will focus on qualities that appear to be specific to autistic females. They will cover topics such as peer supports, relationships, vulnerabilities and successful communications, and will include active supports and information for autistics, parents and educators. At each location, renown autistic women will be on hand to provide insight and mentoring, making sure that each person will gain supports available.

This is one step towards a bigger change in how autistic females are supported and served in our communities and society. Recognized now as one of the most under supported population in the autism community, there needs to be a change in how we think about autism, especially in how it autism is understood and recognized. As part of its long-term goals, the Autism Women's Network seeks to make these changes, and so, in my opinion, this is a worthwhile cause to support.

So if you please, vote with me daily to get the AWN in the top ten of its category.

(Disclosure: Corina Becker serves on the board of the Autism Women's Network)

What I Want People To Know

I wrote this for The Thinking Person's Guide to Autism, where it was originally published on June 30th 2010.  With their permission, I have reposted it here.

In my time browsing the online community, I often get asked about my story, what it’s like to be a late-diagnosed autistic and what I want people to know. This is rather odd, because I’m not in the habit of showing off my scars, but there are some things that I think that I can talk about.

I want to be very honest with you. I am an adult living on social assistance, in a shared accommodation run by a non-profit housing organization. Despite being highly educated, I find it difficult to find and maintain a job on my own, and I’m not even sure that I ever will. I struggle to survive with few to no supports, mostly my family and the little that some organizations have been able to provide. It is, at times, very and extremely hard. There is a lot to remember, and each minute, each second, costs me. It costs me strength and energy, to maintain social skills, to remember how to do things, process information and formulate answers. It takes a lot of work, as I’m sure most parents of autistic people can understand.

I am an autistic adult who was diagnosed with Asperger Syndrome when I was 17, in 2002.  I wish I had known sooner, and that I knew as a child what I know now.

Maybe I wouldn’t have felt like a defective monster, or that I was too lazy and just needed to work harder for most of my life. Maybe it would have shielded me from the taunts of bullies, and helped to soothe the tears I cried into my pillow for nights on end. Maybe it would have helped me and the other children to better understand, so that maybe I wouldn’t be bearing the scars of social blunders. Maybe it would have mended my mother’s broken heart as she watched me desperately calling up every girl in my class, trying to get someone to play with me for a weekend a month away. Maybe my teachers wouldn’t have been so confused, and helped me more than the little ways they snuck into the classroom. Maybe I would have gotten better supports sooner, and would be more comfortable with accommodations, and more willing to ask for help when I’m in trouble. Maybe my parents would have understood me better, and would have been better prepared to help when I started coming home with meltdowns and severe panic attacks every day.

I could go on with all the "maybes" and "what ifs." But maybe just knowing, just having a diagnosis, would have made all the difference in my life. Or maybe it wouldn’t have. I can’t say for certain, the same way I cannot predict the future or outcome for any child, autistic or not.

What I do know is this; I do not want a single child to slip through the cracks and have to suffer being unsupported, through school and throughout life. I do not want them to suffer even a fraction of the damaged self-esteem, heart-broken pain, overwhelming confusion, exhaustion and self-loathing that I clawed through.

Once, I went to South Africa for a course, and met with anti-apartheid activists. To make a change, they told us, take up a cause that is personal. This is about as personal as I can get, that I share my experiences and advice from those experiences, so that others may learn. And so, I go out and try to find parents and caregivers who would welcome what I have to say, in order to make a change. Change, for a better future, not just for the next generation, and the present generation of autistic children, but for the entire autistic population including autistic adults.

I do not tell my story too often.  It is very painful to relive it, and I am thankful that I can focus on using my experiences to think of positive applications to my knowledge.

I want you to understand, that from my point of view, I did not suffer from autism.  That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. For me, the rising autism rates represents a rising rate in awareness and knowledge and a hope that less and less children will be mis-, under- and un-diagnosed, until there is no child that slips through the cracks. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.

To me, each child is a unique person with unique strengths, weaknesses and needs. This is all children, and all people. We all grow up with different cultural backgrounds, with different parents and experiences, and become unique people. At the same time, one autistic individual will require unique supports, just as she or he has unique abilities.

I may not be able to speak on the behalf of the entire autistic population in terms of my beliefs and experiences, but I do my best to apply what I know to each situation I come across on the internet, to see whether I can be of any assistance, even if it is just to provide encouragement. By doing so, I hope that my feedback can provide support to parents and caregivers, who in turn support my fellow autistics.

As I do this, I hope that people remember the following:

• Have understanding. Sometimes just knowing that we are having a hard time is enough. Be aware of what affects each of us and understand that we try very hard with what we have, even when we have nothing left. Even if it does not lead to supports and accommodations, just knowing and giving us a little more room to work can make a big difference.
  
• Have patience. A lot of us can take longer than others to develop and learn things.  But autism is a developmental disorder, not a delay.  So we do develop and grow, but we need your help, and you need to keep your cool.  It may take a saint’s level of patience, but we need someone stable that we can depend on, a steady hand to help guide us when life gets more confusing.
  
• Be caring. More than anything, we are still your children and students. We are still people capable of feeling, of loving and being hurt. Make sure to not just be a service provider or educator. Be our friends, our family. Learn what we love, and use that to speak to us that you care. Learn how we can show you that we also care for you, and to look for how we communicate to you.
  
• Be positive. This is really hard to do sometimes, with all the challenges that arise, but it’s very important. We tend to pick up our attitudes from those we’re around, either being over-sensitive or under-sensitive, and so your attitude becomes ours. With all the difficulties we face together, it’s very easy to be discouraged.  Do what you can to keep a positive perspective on things.
  
• And finally, be good to yourself. You and I are only human. We aren’t perfect. It’s okay if you make mistakes. Forgive yourself, and take the time to take care of yourself. If you need to, seek respite and take a day off. We all need personal time to rest and recharge. So when you feel yourself worn thin, don’t be afraid to reach out for help and take a break.

I don’t believe I am alone when I say I don’t expect you to be superhuman. Raising children and taking care of others can be very hard, and sometimes it’s hard to find help. But there are people who can help, and we want to be there for you.

I hope that my words reach people and provide help in some way. While I strive to make big changes, I believe that all that I’ve gone through and all that I work for is worth it if I can make even just one small change.  Maybe that small change can make all the difference.


~Corina

Response to The Thinking Mother

Late May, I received an email from LizDitz about questions that a home-schooling mother had about Asperger Syndrome.  Originally posted on June 2, 2010, this is my response to her questions.

Hi, I'm an autistic adult, diagnosed with Asperger's. My friend Liz Ditz passed this along to me, thinking that I could be of help. (I just got back from an anime convention, and am still recovering from the overload and sleep deprivation, so please excuse any mistakes/politely tell me if I'm not making sense).

You have a lot of questions, and I'll do my best to cover all of them.

I don't think that neurotypicals (NTs) should have a different set of standards. I don't think that the diagnosis of ASD, ADHD, or anything really, is an excuse for a child to not try to reach the same standards as others.
It's one thing if a person is proven to be unable to reach a standard or a task, but unless that happens, it's not an excuse not to try.

Now, these are kids that are being homeschooled. Like you, their parents have for one reason or another, decided that home schooling is a better place for their children. It might be that regular classrooms and even special ed classrooms are too much for them to handle.
That being said, if these kids are going to be in any way independent and interact with mainstream society, they need to know at least basic manners and social skills. If not, then they will be hampered by their lack of skills, and may even be set up to be institutionalize.

Then it's a matter of whether or not the kids really are autistic or not. It could be a case where some of the kids are rude. Then you deal with it as you would with any other child: talk to the parents.

If the child is autistic, there are reasons to disclose that information, and reasons not to disclose. The benefit of disclosure is that if the kid is trying really hard, and does mess up, there is more understanding and support. The potential downside is that there may be some discrimination, either from other children or from parents.

As you've pointed out, disclosing can lead to a lot of supports, even if it's just a general understanding that the child has trouble and doing what can be done to help.

As for the benefits for a child to have an official diagnosis of Asperger's, well, it depends where you are. In some areas, Asperger's is considered a disability and there are accommodations and supports. However, not every where. I live in Canada, and I know a few autistic people who were diagnosed as high-functioning Autism, instead of Asperger's (it's the same thing, really; the only difference seems to be less noticeable difficulties with verbal skills, although someone with AS can be dysfunction-ally verbal: can speak, but not very good at getting things across).
This is so that the person can access services that would otherwise be denied. In Canada, there is a legislative in the process of being passed that will get Asperger's to be qualified for services, which will bridge the gap between now and when the DSM-V comes out (Asperger's has been combined into Autism Spectrum Disorder).

I'm not entirely sure that there is no benefit to knowing whether a homeschooled child has Asperger's or not. If the child requires outside assistance at times, then yes, it is very helpful to know.

It would also probably be helpful to know about the learning method they are using for the child, so that you can also help out when you see the child is needing assistance, or can prompt the child with social skills, and maybe even offer to have the child over to give the parents and caregivers some respite. This would also have the added bonus of exposing the child to more social situations where he/she can practice and develop skills.

As for college and adulthood... well, I was diagnosed in my late teens. I would have benefited greatly from knowing much sooner that I am autistic, just even so that I know. It has taken me seven years of self-learning to understand how being autistic affects my ability to communicate, social skills, sensory issues and general hygiene. That's development that could've been done as a child. Also, knowing that I am autistic earlier could've helped me to navigate the minefield that is the teenage years, whereas I was in meltdown every day. With an early diagnosis, I figure that supports for me would have been put into place a lot sooner, so that I wasn't being overloaded. And that would have saved me a lot of mental grief alone, not to mention helped me with my academics.

When I was in university, I would give a little talk to the tutors and staff of the Special Needs Office, to explain how autism affects my studies and every part of my life.
So I would say that it is extremely useful to know, throughout the lifespan, because it affects everything.

I'm not entirely sure why a parent would deny the diagnosis. Maybe they still believe there is a stigma involved with ASD. But I know that high intelligence is not a pass that says the child does not has Asperger's. Take myself for example: I'm a brightly, fairly social female who as a child would talk to adults and even laughed at adult level jokes. And I'm most definitely on the spectrum. 


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