Wednesday, December 23, 2015

What Do I Want From The Mighty?

I've been thinking a lot about this in the last few days. The Mighty says they want to learn from their mistakes of the past. They say they want to do better. If that is true, then that would be great, but I'm not convinced of that. I hope they prove me wrong. 

In light of that, I'd like to offer The Mighty my perspective on how they could do better. 

The Mighty claims to support disabled people and their families. I can address this issue from both the perspective of a disabled person, and as family of disabled people, because I am an Autistic parent, and I have Autistic children. So I'll start with the parent side first.

I recognized disability in one of my children about 6 years ago. At that time, there was not a lot of community support that I found helpful. I didn't yet know he was Autistic, but what I read of autism was more scary than educational. Although your site did not yet exist, stories like the ones you share were consuming the Internet. When people say it is so very kind to treat a disabled person with basic dignity, it harms the disability community. Because of these inspiration porn stories, I pictured a life for my son in which people would congratulate themselves for being his friend, or chatting politely at his place of work, or allowing him to score in a sporting event. The idea of that broke me apart. It didn't uplift me. Because I knew my son was a real person, full of personality and passion. The consequence was that I fought the idea of disability. I hoped he would outgrow it. I delayed diagnosis and services like OT, because I didn't want that future for him. Once I recognized he was Autistic, I started seeking out the real experts- Autistic people.

That was a turning point for me. To realize that he was ok, that there were plenty of Autistic adults who didn't wait around for a kind person to go to Homecoming with them. People were out there live damn good lives. Disabled lives. They had genuine achievements to be proud of. Not proud because they did it even though they are disabled. Proud because they are doing genuinely cool things, things they enjoy, things they are good at, sometimes things that make this world a better place. So I followed the real experts, and I never looked back. 

A bit farther into that journey, I recognized that another one of my kids is also Autistic, and that I am too. Today, I see stories from your site in my newsfeed. People are discussing how "kind" it is that someone accepted the cake decorated by an Autistic person, because she thought it would be funny. For the record, I find that pretty unkind, actually. I also find a coworker discussing disability status of another person to be unethical. When sites like yours continuously share these kinds of stories, it causes people to pity people like me. They feel like they have done something great just for using basic manners. They don't see me as their equal. They don't see me as someone who could really be their friend, or capable coworker. That's not making the world better for me or my kids.

So what do I want? I want you to center disabled people. Let us tell our own stories. Don't just choose the disabled people that talk nicely, and portray a feel good message that nondisabled people want to hear. Seek out people that challenge the status quo. Pay them for their time. Make the stories you print be mostly disabled perspectives, not just a few here and there. Give disabled people space to tell their stories, our stories, in our own way. Show us you are ready to listen. 

Sunday, November 1, 2015


Over the last month, for a variety of reasons,  I feel like I have been effectively silenced. Today is Autistics Speaking Day, and today I want to break my silence. So often non-Autistic people tell us to talk nicely, to understand their point of view, and to quite simply, shut up. 

I am coming up on 1 year since I was informally diagnosed as Autistic. I have attempted to find ways to advocate, and to connect with my community. I am so grateful to my Autistic friends for welcoming me in, and serving as my guides. There have been non-Autistic people that were interested in hearing Autistic points of view as well. Some amplify Autistic voices, and that is wonderful and necessary. Others though, silence us by any means necessary. 

Not long ago I wrote something that criticized parents that publicly display their child's challenges. Yes, many non-Autistic people heard that message, thought about it, and agreed. Wonderful! Others, though, brushed it off with comments of, "what about their need for support?" These are silencing tactics. It's a way of telling us that we are wrong, rather than contemplating our words.

A couple of weeks later, I experienced a far greater silencing. Some internet trolls harassed me on Twitter, to such an extent that I had to block and report hundreds of people, and make my profile protected. My crime? Advocating against people that say Autistic people are dangerous. Fighting for my humanity is met with horrendous, triggering, attacks on my identity. And I was effectively silenced.

But no more. I have been rebuilding again. I am speaking up again. Because what we have to say is important.

Thursday, October 1, 2015

Kinds of Autism

I recently read an article entitled, "My Son Has the Kind of Autism No One Talks About."  There was some good in it, as it discussed a need for inclusion of Autistic people, but it also left me frustrated and angry. It didn't discuss any real ways to include us, and  I am tired of people sharing the perspective of parents, rather than the perspective of Autistic people.  There are lots of us!  I find it comical that the author says her son's "kind of autism" isn't talked about.  From my perspective, shared by many other Autistic people, the doom and gloom of autism is what is always shared.  We all have support needs, and those support needs vary from person to person. Like the writer, I am not a fan of the feel-good stories about the disabled person attending prom, because they are focused on the non-disabled person and intended to pat non-disabled people on the back for simply being our friends.  Here is the thing.  Autistic people have value!  Really, we do. Let me say it again for the people in the back, all Autistic people have value! Does that mean the Autistic person who does not speak and requires support at all times, even as an adult has value?  Yes, yes it does.  I hate how she refers to the Autistic prodigy playing the piano better than Billy Joel.  No, we are not all gifted, but we all have value.  We all have things we are good at, and we all need help.  The prodigy playing the piano needs help too.  Autism is a disability.  The Neurodiversity movement is not about denying that fact.  I am an Autistic parent, wife, and teacher.  I am good at a lot of things.  I am also disabled. Some things are really hard, and that's ok.  What's not ok is complaining about how hard your life raising an Autistic child is. Autistic children often understand more than you think they do.  Many Autistic children will one day read that blog post written about them.  How do you think they will feel when that day comes?  I see it as a red flag when a parent writes about how hard it is to parent their child.  Every year in March the disability community comes together to mourn children murdered by their caregivers.  We say their names, and remember them for the beautiful, valuable life they led.  People give these parents a platform to talk about their frustrations, and sometimes those same children being written about end up having their names read on our Disability Day of Mourning.  The author of this story is right that behavior is communication.  We need to listen to what kids are saying though.  Stop mourning for what you can't do because of your Autistic child, and start celebrating the child that is right here.  Listen to what they are telling you, through words, signs, typing, pictures, or behavior.  Keep looking for ways to help that child communicate!  Find your community with other Autistic adults and children.  We are here and we are valuable. Get involved with a local autism organization, (not Autism Speaks.) Find an organization that celebrates your family, such as a local chapter of the Autistic Self Advocacy Network. Your child is worth it.

Saturday, July 11, 2015

What's wrong with Autism Speaks from an Autistic point of view

It seems everyone is aware of autism these days. I can't think of anyone I have met, who has never heard of autism.  Autism Speaks has made sure that we are all aware.  Their latest awareness piece came in the form of an article in People magazine, proclaiming Bob and Suzanne Wright to be heroes, battling the autism epidemic.  Battling. Epidemic. The hate speech never ends with Autism Speaks.  It is as if they are unaware that Autistic people don't want you to go to war with our brains.  My family became aware of our own autism, right at the same time that Autism Speaks was getting off the ground, and becoming a widely known entity.  So they made sure that we knew that autism was something to be afraid of.  My Autistic son was 5 years old in 2009, when Autism Speaks stated, "I am autism.... I work faster than pediatric aids, cancer, and diabetes combined.  And if you're happily married, I will make sure that your marriage fails." Where are the help and the resources? OT services could be provided for families to get help with understanding their children's sensory needs.  Communication devices to help people communicate more effectively with their families would certainly help many of us. No, fear is all Autism Speaks has to offer.   Autism Speaks raises millions of dollars with their pity campaigns, and yet, only gives 4% back to families in the communities. 
My son was only 2 years old when Autism Speaks made a documentary called Autism Every Day.  This movie is a pity party for parents of Autistic children, the worst part being when a mom talks about wanting to drive her Autistic child off a bridge, while her Autistic daughter is in the room, and says she only did not do that because of her other, non-Autistic child. These are the things that do the most damage.  Autistic children are murdered by their parents at an alarming rate.  Yet, in the media, which Autism Speaks is always at the center of, this is excused.  People lament the lack of services, think of the martyr parents, and shake their heads at the unfortunate lot in life to have an Autistic child. In their most recent documentary, Sounding the Alarm, there is more of the same.  Over and over again, the message from Autism Speaks is that autism is an epidemic to be battled.  They don't take the time to talk to Autistic people of any age to get their opinions on what services are needed, or what message should be sent to the world at large. Instead, they speak to weeping parents, and call for more services as they exploit Autistic people's darkest moments for profit. They show a complete and utter disrespect for Autistic people in every action that they take.  Because of this, it is very difficult for me to tell people that I am Autistic.  I know it changes their opinion of me, because of the lies that Autism Speaks told them about people like me. No organization has done more harm to the community they claim to help.  It makes me sad that they are the leading resource doctors, therapists, businesses, and everyone else, looks to when seeking information about autism.  How can they be the leading resource when they do not even consult with Autistic people in any meaningful roles? It's time for people to stop listening to Autism Speaks, and start listening to Autistic people. 

Saturday, June 13, 2015

What's the opposite of warrior mom?

I am not a warrior mom.  My kids learn differently than other kids, and I learn differently than other adults.  They enjoy different things, and act differently.  Again, so do I.  I am not searching for a miracle treatment, or practicing "skills" 24, 7.  We are just being us.  Sometimes I feel judged for that, like I don't want good outcomes for my kids.  That's not true.  I want all the best for my kids, but my idea of best differs from that of the warrior moms.  I want my kids to be proud of who they are, just as they are. I want them to be with people that make them happy, and do things that make them happy.  My goal is not the appearance of typicality.  No one in my family is typical, but our atypicality makes us who we are, and who we are is pretty great.  

Saturday, May 16, 2015

Autism Positivity: Acceptance, Love, and Self-care

I'm a day late.  I guess that's the point though, of self care.  I'm learning to not live my life according to other people's standards.  Thankfully, the Autistic community, my community, accepts that, celebrates it even, so it's ok to be a day late, and won't be met with exasperation.  To me, acceptance is about doing things on my timeline, (which is generally slower than the norm).  It's about doing things in my way.  Love.  Loving my unique perspective.  I often find my perspective varies from the crowd, is considered radical, and I'm getting better at expressing that varied opinion.  I'm recognizing that I'm not wrong just because my opinion is the minority.  I know she didn't write the quote, by I first read this quote on Neurodivergent K's blog, and I fell in love with it:

When the mob and the press and the whole world tell you to move, your job is to plant yourself like a tree beside the river of truth, and tell the whole world

"No, you move."

So I'm learning to be more outspoken.  Self care.  Learning to take care of myself, my needs, my convictions.  That's my autism positivity.  The gift the Autistic community has given me of recognizing and standing by your convictions regardless of the opinions of the majority, because the majority is often wrong.

Thursday, April 30, 2015

BADD-Blogging Against Disablism/Combatting Negative Media Messages

Good riddance to my first April as an Autistic person.  Of course, it's not my first April as an Autistic person.  It's just the first April that I knew I was Autistic.  The ableism cuts deeper when you know they're referring to you.  It wasn't too many years ago that I didn't have much of an idea what autism was.  My first intro to autism for real, where I thought it might be close to me, was when a pediatrician casually mentioned the possibility at a doctor appointment.  My son, (now 11 years old,) was 9 months old and not yet laughing.  I went home and immediately googled autism.  This was my introduction to the ableism.  The images, anecdotes, and articles all painted such a horrific picture of autism that I blocked the thought out for several years.  The ableism that runs rampant in the media told me things like, if my son "had autism" he would never be able to tell me he loved me.  He would never live an independent life.  He would never have real friends.  "People with autism," as they love to "respectfully" call us, lack empathy and fit the profile of a psychopath, the media says.  A quick google search will tell you page after page about what is wrong and broken, never to be fixed, or worse--we have the magical cure if only you...  So I logged off and shut the idea out of my mind.  I could have been getting him help.  We could have used the help of an occupational therapist to address his sensory needs, if I wasn't so busy pretending they didn't exist.  We could have used the help of a speech pathologist to help him communicate.  But no, any help we might get wasn't worth selling my soul. Ultimately though, I couldn't ignore it any more.  Lucky for me, by this point I did know some actually Autistic people, and I knew that I liked them.  I knew that they didn't fit the descriptions I had read about.  So my son got his diagnosis and the help he needed. Now I know that I'm Autistic too, and I've learned a lot about what that really means in the last 10 years since this journey began.  The thing is that all the messages out there, in the form of "Awareness" do so much harm to actual Autistic people.  For us it meant waiting to get real help, because we thought it meant admitting this terrible, bleak future.  Now it means fighting the stigma day after day.  It means that I am an Autistic wife, mother, and teacher, but very few people know I am Autistic because it is unsafe.  I have proven myself to be a great teacher, capable and caring; and yet, if my colleagues knew I was Autistic, they would look for my flaws instead.  They would assume me incapable of certain tasks. That's because of the ableism disguised as awareness so common these days.  No, I wasn't caused by vaccines.  Yes, I do think autism has its benefits.  Yes, my son and I are great, nice people with some weird quirks.  No, going for a walk and talking about my deficiencies does not help me, and no I don't prefer person first language.  I want Autistic people to be treated as the real people we are.  Support us when we need it, but also recognize what good we bring to the table.  Lay the negative, disabling rhetoric aside.  I want a different world for my son and for myself, and your "awareness" isn't helping.

Monday, April 6, 2015

Blue Lights

I may as well get a post like this out of the way, because it is what is on my mind 24/7 right now.  I am sick and tired of blue lights, puzzle pieces, and people who don't know what's wrong with them.  I am a teacher, and most of my colleagues think Autism Speaks is great, puzzle pieces are great, and we should all be wearing blue.  As an Autistic woman, using blue to represent autism makes me feel erased, even if the color wasn't associated with Autism $peaks.  I wish the "awareness" would just stop.  I don't want a month. I want every day people to listen to Autistic people.  Support our needs.  Celebrate our successes with us.  Awareness in the form of understanding what our needs might look like is a good thing, but the fear and hate rhetoric has got to stop!