Monthly Archives: March 2015
We’ve compiled a list of some alternatives to “Autism Awareness”. These are events that center the Autistic experience and Autistic voices by promoting community, pride and the ideals of neurodiversity. Check them out and if you are planning a similar event, please contact us at firstname.lastname@example.org and we can add you to the list!
Don’t light it up blue, walk in red!
Help spread the message that autistic people have loving and reciprocal relationships with their families and raise funds for important support programs by participating in PWN the Game! with your autistic loved one(s)!
A campaign to calm down the rhetoric of fear in April
The official event for Autism Acceptance Day!
Celebrating both Autism Acceptance and National Poetry Month!
An alternative to the #AutismAwareness challenge for April:
Autism Positivity Flashblog
The Autism Positivity Flashblog is in it’s fourth year, and organizers are working on this event with more details available soon!
The Autistic Self Advocacy Network
A fun contest to participate in acceptance events all month long.
In Person Events
Autism HWY Chalk Festival
Our 5th Annual event!!
registration forms HERE: http://www.covinaca.gov/city-departments/parks-a-recreation/events
Art, Information, Music and FUN connect us ALL. Celebrating the vitality of life, diversity and friendship through visual and performance ART! Come on out and meet our terrific community!
Take a look at last year’s event here: https://www.youtube.com/watch?v=JcxfU9sb6Zs
Once again there will be fantastic speeches, live music, a Remo drum circle, beyond amazing chalk art with prizes, fun opportunity drawings, wonderful vendors, food and above all LOVE & friendship!
See YOU there!
For more info visit our website www.autismchalkart.com/
and e-mail inquiries to: email@example.com
Autism Women’s Network & Ed Wiley Autism Acceptance Library Autism Acceptance Event
Autism Women’s Network & The Ed Wiley Autism Acceptance Lending Library are collaborating for a special Autism Acceptance Month Event!
At the Stanwood-Camano Community Resource Center 9612 271st St NW Stanwood, WA
Contact information: lei@autismwomensnetwork or (text only please) 425-791-0869
We will feature a screening of the award winning film “Vectors of Autism: a documentary about Laura Nagle” and a presentation by Autistic teen, Harrison, entitled “Dear Teacher: Building Social Understanding and Supporting Self-Advocacy for Students on the Autism Spectrum”
We will follow up with a discussion featuring Leah Kelley, M.Ed., a special Education teacher, parent and author of the popular autism blog 30 Days of Autism: Leah Kelley
and Lei Wiley-Mydske, Community Outreach Coordinator at Autism Women’s Network, and Director/Founder of The Ed Wiley Autism Acceptance Lending Library, who is both Autistic herself and the parent of an Autistic child.
Information & Resources will be available to learn more about Autism Acceptance Month, Autistic Pride, Autistic Culture, and Supporting Autistic people in respectful & meaningful ways.
Coffee & Refreshments
A Sensory/Autism Friendly Event, please remember to be fragrance free, and no flash photography! Thank you!
Bellevue Spectrum Navigators 4th Annual Autism Acceptance Video Game Tournament
We are holding our 4th Annual Autism Acceptance Video Game Tournament at Bellevue College to support our Autism Spectrum Navigators program on Friday, April 24 from 4-8 p.m. It is an all ages tournament, and there will also be a Kids’ Game Room provided by the Microsoft Xbox Development Team. The campus and community are invited.
Autism’s Own Conference.
This event takes place April 2, 2015 in room 105 of the Harry Hickman building at the University of Victoria, Victoria, B.C., Canada. A reception with refreshments begins at 6:20 p.m. and the main event is at 7 p.m. The event features performers, musicians, artists and writers who are on the autism spectrum. The event is planned and organized exclusively by autistic people
ASAN South Bay Stimming Pot Luck
Saturday April 25, 2015
Autism Society GLB/SGV Social Development and Empowerment Center
8635 Greenleaf Ave Unit B Whittier CA
A social gathering and Stim Toy & Food Potluck!
****The Listening Larry images parodied here are the intellectual property of Social Thinking, but shown here as part of a critique in the public interest (intended in good faith as a fair use) and done without compensation on our part. – PACLA team****
Many of you have seen the poster for “Whole Body Listening”. It’s in pretty much every special education classroom. In the poster, Larry basically shames Autistic children because they do not listen or communicate the way that typical children do. I am not a fan of Ableist Larry and I am horrified that this is the message we are giving to Autistic children.
For reference, this is Ableist Larry:
This was posted on the wall of a friend, and another friend remarked that someone needed to make posters to teach Larry about his own ableism.
So, here is the poster that NEEDS to be in the classrooms of Autistic children. This is what teachers and professionals and parents NEED to understand about Autistic neurology:
Remember a few years back when the Temple Grandin movie came out? The part that really sticks out for me was at the end of the film. When Temple stood up at the conference and told the room that she was Autistic. All of the parents and professionals were so excited and practically begging to hear her voice. Maybe it was different for Temple Grandin. Maybe they added that part for dramatic effect. Maybe that particular autism conference took place in an alternate reality….like Bizzarro World. Because in the real world, nobody cares about what we have to say.
As a parent of an Autistic child, I am usually seen as an “authority” on autism. That is, until I also disclose my own diagnosis. I am Autistic too, and the things I have to say often conflict with what people think they know about autism. I know that I am not alone. Even Autistic people are not alone. I have seen other Disabled activists entirely dismissed when bringing up issues of accessibility or the problematic things that our “helpers” (parents, professionals, etc.) do in our best interest.
Everyone loves a “self advocate” when we are validating the things they do for Disabled people. But that seems to shift dramatically in that nobody likes it when we point out the flaws in their thinking or in their approaches.
I have worked in my local community with various disability advocacy organizations. First as a parent, then when I felt brave enough to “come out” and disclose that I too, was Autistic, as a self advocate. Sometimes, I wish I could go back. Knowing what I know now, that I would be dismissed and humiliated on multiple occasions because I care more about the rights of Disabled people than how we make other people feel. If I could go back, sometimes I wonder how open I would be.
Don’t get me wrong. I am extremely proud of being Autistic and Disabled. I am proud of who I am, and who my child is. I love my Autistic community more than I think I can express with words.
I just wonder sometimes if I could do more to actually help our cause, had I continued to try to “pass”.
I recall a meeting with my local school district. We were meeting to discuss “Autism Awareness” and possible activities for the month of April. I was the ONLY Autistic person in attendance. There were parents, special education teachers and administrators. Had I not been a parent, I would not have been invited. No one thinks to include Autistic people in these conversations.
One of the teachers mentioned possibly doing a fundraising walk for Autism Speaks.
I said “I can’t be involved in anything like that, Autism Speaks is not a good organization, they do harm to Autistic people….”
And a parent cut me off.
“Yeah, some people don’t like them…”
The administrator asked me for more information, but every time I tried to talk a parent cut me off and accused me of “derailing” their efforts to host an “awareness” event.
This is why I think “awareness” is lazy.
If you want to do something to help Autistic people, if you want to attach your name to an event that is supposed to be ABOUT US, you better make sure that you are supporting us in respectful and meaningful ways. Do your research. Many Autistics feel that Autism Speaks is a hate group. You don’t dismiss my concerns as an Autistic person whose dignity and humanity is constantly in question by saying “yeah, some people don’t like them.” It is so much more than that and if you can’t see it, it’s because your privilege isn’t forcing you to confront it. Autistic people don’t have that luxury.
There was another time, a meeting for a community (disability related) organization where we discussed how to make community meetings more widely attended. A woman in attendance had mentioned that the facility was not wheelchair accessible. She was humiliated on multiple occasions trying to access the space. So, there was a “discussion” about whether or not another space should be chosen. To me, there should be no discussion. A space is inaccessible, and you are being informed of this, you find another space that is accessible. That’s what you do if you value “self advocates” who are participating. You don’t discuss whether or not it matters. Because being included, making sure that everyone is able to participate is non negotiable. It’s not an option to be “discussed”.
Is the space wheelchair accessible?
Is the space sensory friendly?
Is the space close to public transportation?
Is the lighting/noise level Autistic friendly?
None of these things were true about that space. All of these points were brought up.
Guess where the meetings are still being held?
I recall another incident where there was a conflict about the word “acceptance”. Apparently, that was too radical a thing for people to understand. As I stated before, I think awareness is lazy, it requires no action. So, yes, I made an issue of the words when discussing yet ANOTHER April event where I tried to work WITH local advocacy organizations and parents. I was told that I was making a big deal out of nothing. I tried to explain why awareness harms Autistic people, how it is done for show, but there is no meaning behind it. How what we need is for people to accept and include us, because they are already aware of us and look where that has got us.
A parent threw her hands up in the air and just sighed loudly “Awareness, acceptance, it’s the SAME THING!”
No, it’s not. But when I tried to explain, I was ignored, dismissed. How should I know what I’m talking about? I’m just actually Autistic and live with the consequences of “autism awareness” every day.
These situations are just a few that I was able to participate in, since being “out” about being Autistic, I have found that unlike other non Autistic parents in my area, I am often overlooked or flat out ignored. It gets to be truly humiliating when you are never asked to participate or feel that your involvement in your community is unwelcome. The message I get over and over again is that my civil rights matter less than the feelings and egos of parents and professionals. The way you treat Autistic adults now is the example you are setting. The world is watching, and that is how they will treat your children someday.
When I pulled my child out of school because they refused to include him, I was “too biased to understand” that an ABA based classroom was in his best interest. I spoiled him, you see. He needed compliance training and behavior management. Even at the cost of his dignity and humanity. They told me that I don’t know how his brain works like they do, because they are behaviorists and professionals who know about special education and I am just a radical whose brain is flawed just like his.
Our school district lied to me on many occasions. The biggest lie was when they told me that special education was a service, not a place, yet there are segregated classrooms in every school in this district. That is where they put the children with disabilities. They think including them is too hard because they are too focused on managing “behaviors” without understanding that behaviors always serve a purpose. Even when they are weird. Even when they are Autistic.
They could not force my child to act normal. They could not force him to be compliant. He, unlike me, has very little passing privilege and god damn it, I have never been more proud of him. He is authentic and Autistic and he doesn’t know the shame of being forced to act normal. With every flap, with every verbal stim, with everything he does he is honest and openly himself.
But these things were seen as bad. I was told that I didn’t understand how hard it would be for him to navigate this world without ABA, without being forced to talk even when he would rather use AAC. Even when these professionals knew I was also Autistic, they literally told me that I would not know how hard his life would be.
I know how hard his life will be, but it’s not because of autism. His life will always be harder because of ableism. Because we say we love the concept of self advocacy, while forcing compliance and indistinguishability. We say we love to hear what Autistic people have to say, but only when they are echoing back their own internalized ableism. We say we encourage independence and speaking for oneself, until it conflicts with what we think we know about autism and disability.
I have a hard time with organizations and individuals that say they want to make the world better for me, for my kid, for other Autistic people in one breath, while placing more barriers in our way with the next. I want the world to be better for my son. I imagine that most parents want better for their Autistic children too. It will start by actually listening to Autistic people even when it’s hard to hear. Even when it makes you uncomfortable.
*Image description: Super cute little girl with blond hair, pink sunglasses and a pink tee shirt that reads ‘Autism Speaks does NOT speak for me’.
We’re rapidly approaching the month of April which means you’ll be seeing people post ‘autism awareness’ images and ‘lighting it up blue’.
You will also see the Autistic community and their allies bitching about it.
See, ‘awareness’ sucks. ‘Awareness’ is prevalence rates and tragedyspeak and ‘we need to find a cure’ crap. It’s a money grab by Autism $peaks and the scarier they can make the ‘awareness’, the more cash will flow into their coffers. And Twizzler Challenges? No.
We’re all about ‘Autism Acceptance’ up in heyah. Acceptance is understanding that it’s not all doom and gloom. That, yes, some times are really rough but many are beautiful and full of joy and that’s what we should focus on. It’s learning to embrace difference instead of merely tolerating or even trying to eradicate it. It’s understanding that maybe that ‘spoiled brat’ screaming in the checkout line is really an autistic child who is experiencing sensory overload and giving them a kind smile instead of the stinkeye. It’s understanding that children don’t magically outgrow autism and that you have probably known autistic adults in your life and never realized it.
So, what is autism? Autism is a little girl who sang so much her parents didn’t realize she couldn’t talk. It’s a little girl who is terrified of seeing someone sweep with a broom but loves to use a broom herself. Autism is listening to Gangnam Style, on repeat, every time we went anywhere in the car. For four months straight.
It’s the Wiggles Christmas DVD year round.
It’s belly cuddles and bracelet collections and spontaneous giggles.
It’s a child who notices everything and forgets nothing.
And she’ll swipe your phone in a heartbeat.
It’s the 42 year old woman who spent her life being told that she was crazy only to discover that her brain really does work differently from others. And that it doesn’t mean she’s broken. It’s the 42 year old woman who doesn’t understand why the world works the way it does but can instantly understand why her child can’t tolerate going into a BJ’s Wholesale Club.
It does not mean Rainman but sometimes I do hear,”Uh oh, mama!”, hundreds of times in one day.
Autism means that ‘hundreds of times in one day’ is not an exaggeration.
Autism also means that your mother’s mail carrier’s autistic cousin probably doesn’t appear to be anything like my 4 year old. Or myself. There is no One True Autism.
Autism is not all rainbows and unicorns all the time. It is disabling to some degree on even the best of days. I will never post about many of Evie’s struggles because being 4 years old does not mean her dignity should be ignored. If she wants to talk about them in a blog someday, that’s up to her. I don’t mind talking about my own difficulties. I’m pretty much an open book but I don’t always work,”I had a meltdown yesterday and beat my legs with a hairbrush”, into everyday conversations.
I kinda want to now, though. “Did you see last night’s episode of Supernatural? Wasn’t Cas hysterical? Speaking of, sometimes I scream and cry and pull hair out of my head when I’m overwhelmed.”
Or not. *sigh*
So what did we learn today? Acceptance = Good. ‘Awareness’ = Bad. My kid is all kinds of awesome and she wouldn’t be herself without her autistic neurology. Me? Every 6 months or so I manage a minute or two of awesomeness but, yes, I wouldn’t be me without my autistic brain, either.
Are you planning an Autism Acceptance Event this April? Something that challenges traditional “awareness” by centering the voices and experiences of Autistic people?
PACLA wants to know about your event! We want to put together a resource for others to be able to participate and contribute to events in their neighborhood or city, or online where anyone can participate!
We’ve had enough “awareness”, let’s celebrate Autistic people this April with positive messages that embrace acceptance, inclusion and neurodiversity!
Image: Red text in upper left corner reads: Are you planning an Autism Acceptance Month Event? PACLA wants to hear about it! Red text in lower right corner reads: “We want to signal boost your Autism Acceptance Event onour blog! Live events or online events! Any event that celebrates Autsitic culture, pride, inclusion, neurodiversity and acceptance! Send an e-mail to firstname.lastname@example.org for more information! Images in upper right and lower left are geometric, multicolored designs with red person shaped figures flapping.
For me, Autism Acceptance isn’t a single act.
But 1,000 acts of love, carried out every single day, in effort to improve my child’s quality of life.
Autism Acceptance is being flexible.
Sometimes it is cleaning up after a messy sensory exploration. Other times it is happily waiting outside a busy museum with her watching her investigate various surfaces—while the rest of my family explores inside.
Autism Acceptance isn’t being overly permissive. It isn’t allowing my child’s education or development stagnate.
For me, that has meant acknowledging that I have mistakenly failed to give her access to a functional language by insisting that she learn to speak…instead of giving her access to AAC so that she can communicate in the way that she is capable. It is fighting for her to have access to a challenging and appropriate education which reflects the presumption of her competence.
Autism Acceptance is not forcing my child to conform to social norms.
I will flap in joy with her no matter where we are. I will glare in defiance at any person who dares to cast disapproving eyes on her.
Autism Acceptance is understanding that my child has very specific interests.
I will always present opportunities to engage in new activities. When she declines in favor of swimming every day or watching the same Sesame Street, I don’t fret. I smile. It means that I do not label her passions “obsessions.” Instead, I encourage her to explore her special interests with enthusiasm and understanding.
Autism Acceptance is a struggle.
NOT a struggle against my child.
But a struggle to remember that what makes my child feel good is not the same as what makes me feel good. A struggle to remember that it is not my job to desensitize her or immerse her in that which she cannot cope.
A struggle against those that insist that she must conform.
A struggle to keep my mind open—to continue to question the things that I think I know.
A struggle to balance my innate desire to protect my child with giving her the freedom she needs to learn and grow.
Autism Acceptance is infuriating.
Having to repeatedly insist that my child is a human being. That she has the right to autonomy. That she must be respected. Pointing out, over and over, the ways which her basic human rights are being violated.
Autism Acceptance is being prepared.
For me that means never running out of yogurt. Always being prepared to leave overwhelming situations. Having an understanding of what she entitled to by law and being prepared to demand that the law is obeyed.
Autism Acceptance is loving parenting.
Remembering that the only thing I want for my child is happiness and that it is my privilege to help her get there.
Knowing that this is the child that I want and love. And that a non-Autistic version of her is not only not possible—but not wanted.
Autism acceptance means respect for the Autistic person in your life’s unique neurology. It means accommodations & supports that honor the autonomy and humanity of the Autistic person. When we practice autism acceptance, we recognize the innate value of neurodiversity as a natural part of human diversity & the human experience.
Respecting & giving access to all forms of Autistic communication, not just verbal speech
Celebrating the stim!
Looking to Autistic people as the true experts on the Autistic experience
Selecting therapies that seek to support, not “fix” and that honor Autistic neurology as a natural and valid way to be
Empowering Autistic children by teaching self advocacy skills
Embracing the values of Autistic Pride & Autistic Culture
Rejecting dehumanizing “functioning labels”
Practicing authentic inclusion
When you practice acceptance, you are showing the world how to treat your Autistic child. You are making a better world for all Autistic people!
Recently, a Canadian couple live tweeted their Autistic son’s meltdown.
They claimed they did to “raise awareness” and to help other parents know they are not alone.
I am not sure exactly how publicly broadcasting your children’s most vulnerable moments, the times when they need your understanding and love the most is “raising awareness” for anything other than what a really terrible parent you are. The complete and total lack of empathy for their child is absolutely heartbreaking. Their inability to grasp that autism is not something that he is doing to other people, but a part of his neurology is irresponsible and narcissistic.
Let’s be abundantly clear: Shaming and humiliation are abuse. They are the behaviors of bullies. Bullying and abusing your own children are not the actions of a loving parent.
If defending a parent’s “right” to publicly shame their child and receive sympathy and toxic “support” from other parents is more important to you than an Autistic child’s right to privacy and dignity, you need to reexamine your priorities.
I believe this is the “divide” that people talk about when it comes to the “autism community”. Some of us are fighting for the rights and humanity of Autistic people, and some of us are just fighting for a platform for parents to complain about parenting a Disabled child.
If your way of “raising awareness” is at the expense and dignity of your child, YOU ARE DOING IT WRONG.
If you have any doubt in your mind about the intentions of the parents who exploited their child in the moments where he was terrified, overwhelmed and in need of love the most, just take a look at how they and their sympathizers talk to Autistic adults in a public forum:
It is NEVER okay to humiliate your child. Your Autistic child is a human being, with real feelings. Typing those sentences seems ridiculous because it should be obvious, but it is an unfortunate reality that way too many parents of Autistic children need to be reminded of these things. There are many ways to receive support and educate people about autism that don’t involve harming or exploiting your child.
Parenting is not an easy job. It has many rewards and many challenges. Parenting an Autistic child may have different challenges than you are expecting and none of that is the fault of your child. When you are having a hard time understanding and supporting your child, it is never an excuse to harm them emotionally or physically. This includes not excusing your actions by saying you are obligated to support other parents or raise “awareness”. Your number one obligation is to support and protect your own child. Don’t ever forget that. Your children won’t.