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."  http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/ 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.  http://loveexplosions.net/2014/10/31/oops-they-did-it-again-autism-speaks-2013-financials-just-released/ 
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. http://tinyurl.com/nnhveky 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.  http://www.autistichoya.com/2013/03/honoring-dead.html 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?  https://www.autismspeaks.org/about-us/board-directors It's time for people to stop listening to Autism Speaks, and start listening to Autistic people. 

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.  

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.

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.

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!