I am NOT My Child's Voice!

Many parents claim to be their disabled child's voice.  I am not that kind of parent.  I am not my child's voice.  I have never been my child's voice.  

Please read this:

YOU ARE NOT YOUR DISABLED CHILD'S VOICE.

Read it again.

You.  Are. Not. Your.  Disabled. Child's.  Voice.

You are not.

Are you a ventriloquist?  You are still not your child's voice.  

Are you a magical being who can force people to speak your will?  You are still not your child's voice.

Your child has a voice.   Stop ignoring it.  

Stop co-opting it.   

Stop making your child's disability all about YOU. 

_

When my child was a tiny baby and cried out when he needed something, he had his own voice. 

When my little one was nonspeaking (until he was about six), he had his own voice.   He pointed.  He signed.  He used picture cards.  He complained. He resisted.  He smiled.  He laughed.  He cuddled.  He pushed me away. He was non-compliant.  He communicated.  He had his own voice. 

When my child loses language, as he sometimes does because that is a not uncommon thing with Autistic people.....he has his own voice.  

He types.  He writes.  He points.  He signs.  He uses picture cards.  He complains.  He resists. He smiles. He laughs.  He cuddles.  He pushes me away.  He is non-compliant.  He communicates.  

This is his voice.  

Even when it is not a speaking voice, this is his voice.  

It is not my voice.   It is his own.  

_

My child and I have the same disabilities.  

I am still not my disabled child's voice.   I can sometimes understand him in ways that non-disabled parents do not understand their disabled children, but I am still not my child's voice.  

I will never be his voice. 

He has his own.

It is my job as a parent to help him advocate for himself, not to advocate in his place.

It is my job as a parent to make sure his voice is heard and respected.  Even when other people do not understand.  Even when people will try to tell him that I am his voice.  Because I am the grown up and the parent, that does not give me the right to speak over him or for him.  

I will never be his voice.  That is his and his alone.   I refuse to take that away from him.  

Why I Dislike The Mighty & Better Alternatives for Parents....

Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. The narrative of tragedy surrounding the experience of parenting disabled children has real life consequences for disabled people. If you want to serve our communities, you must not tell our stories without us and with so little respect for us. If you want to help disabled people, learn about ableism, learn about injustice, learn about ways to make the world better, fairer and more inclusive for us.

Disabled voices MUST be central if you are interested in advocacy. Disabled voices MUST be the priority in any conversation about our lives. Parents and caregivers are important and if they feel that they need support in their journey, it can never come at the cost of our humanity. If your support is toxic, it helps no one. It certainly doesn't help the disabled child you are parenting and it also hurts you, and your relationship with your child.

There are lots of places that are interested in parent EDUCATION, which is different from support, but in the end, that is what is going to make you feel the most supported. When you learn from the real experts (disabled people), you are going to find the kind of peace that you just can't find from a group of people sitting around complaining about disability and who view their children as burdens.

Disability is a natural part of the human experience. That's from the ADA (Americans with Disabilities Act). I say this a lot, but if a quarter century old piece of legislation is more progressive than you, you've got a lot of learning to do.

One of the reasons disability activists are so critical of parent centered spaces is because we are the ones living with the consequences of our lives being portrayed as burdens and tragedies. We don't want your kids to grow up feeling that way. We want better for your kids because they deserve it.

So, I don't like The Mighty, and I don't like a lot of parent centered spaces that think that we need to see "both sides" when one of those sides is literally arguing for our own lives. Disabled children and adults deserve to be respected and to be able to live our lives with dignity. We do not deserve to have to defer to a parent's "right" to complain about their lot in life. Disabled lives have value and we need to start remembering that and believing that.

As I said before, there are spaces online for parents to learn. Places for parents to get support in parenting by taking a seat and listening to the real experts.... Support that does not come at the cost of their child's humanity. Some spaces that are doing it right: Ollibean

Parenting Autistic Children With Love & Acceptance

Autism Women's Network (a community by and for Autistic women, but parents are welcome visitors)

Down Syndrome Uprising

Respectfully Connected

In addition to that, there are TONS of disabled adults blogging and talking about their lives. You just need to look and you'll find them.

Behavior Plan For Parents of Newly Diagnosed Autistic Children

A Behavior Plan For Parents of Newly Diagnosed Autistic Children.

Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives.  Your distress about an autism diagnosis are most certainly  because of these unhealthy messages.  Please remember that your behavior in regards to your child’s diagnosis is a choice.  Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.

• I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”.   I recognize that I am my child’s safety net against an often hostile world.  When I feel like sharing, I will ask myself if this is something that I would want others to share about me.  
• I will never blame autism when I have a hard time parenting my child.  Parenting is stressful at times, but rewarding as well.  This is true for ANY child and I will recognize this.
• I will prioritize the voices of Autistic people over the “experts” as I recognize that Autistic people are the ultimate experts on their own lives.  
• I will throw out the myth of a “developmental window” and acknowledge that my child will grow and learn in their own time, in their own way with my love, guidance and nurturing.
• I will never apologize for my child being openly Autistic.
• I will look at every therapy offered to my child with a critical eye.  I will ask myself what is the desired outcome?  Is it supportive or is it attempting to change my child’s neurology? I will never force my child into therapies that vow indistinguishability or that seek to “fix” or promise a non-Autistic version of my child.
• I will embrace the neurodiversity paradigm and celebrate my child as a beautiful part of the wide and diverse spectrum of humanity.
• I will learn about the social model of disability and confront ableism when I see it.  I will learn about the disability and autistic rights movements and use my privilege to further the cause.
• I will learn about Autistic culture and find Autistic friends, not just for my child but for me as well. I will  promote acceptance and lead by my example.
• I will learn about identity first language and show my child that I am proud of their Autistic identity.  
• I will NEVER say that I love my child but not their autism.  I will recognize that autism is an integral part of who they are and shapes how they view, process and experience this world. I will love every part of my child.  I will never teach them shame  or internalized ableism.  
• I will presume that my child is competent and understands more than may be apparent. I understand that communication is more than speech and I will support my child's communication in any form. * 

• I will never fight autism, but I sure as hell will fight for their right to be exactly who they are in this world.  
• I will recognize that I am only human and I will make mistakes along the way.  I will forgive myself and do better.

For a printable version of this Behavior Plan, click here.

Image: Green background with dark text that reads:  Behavior Plan for Parents of Newly Diagnosed Autistic Kids https://goo.gl/WPpnrp autistictimestwo.blogspot.com

*Thank you to Ann Littell for this contribution to the Behavior Plan!

Whole Body Understanding Resources

I have been selling these posters I that developed to support the library.   I've decided to also make them available for free to download and print for anyone who would like to use them for non-commercial purposes or to advocate for themselves or their child.   I have two versions of the Whole Body Understanding poster, one is autism specific and the other is aimed at other neurodivergent learners.

You can click here for the Whole Body Understanding: Autism poster

You can click here for the Whole Body Understanding: Neurodivergent Learners poster

I still sell them on my little Redbubble shop, but I would like for them to be more widely available to help others who want to use them to promote acceptance and to support students of ALL learning styles in respectful, positive and empowering ways!   If you like them, and have the ability to support the library, I'm always accepting donations too!  But if you can't afford to..... then, that's why they are free!

Why I #BoycottAutismSpeaks

The reason I speak out against Autism Speaks is because I love my Autistic son.  I love him so much that he has forced me to love myself too.  If you are not Autistic or otherwise Disabled, you might not know what it is like to grow up with these messages of hate and fear and people treating you like you're nothing but a horrible burden on society.

You hear about what you cost, you hear about how if you could just act a little less Autistic, people would like you so much more.  Even those of us who grew up without a name for what made us different....we felt it too.

So you start to lie.  You pretend that if you just keep trying, you can be as normal as everyone else.  And you work so damn hard at it.  They put you in social skills classes, or therapies to try to make you just like everyone else.  You try.   But at the end of the day, you know it's a lie.  When they tell you "Great job!", they are congratulating you for a lie.  They are telling you that who you are, it's not okay, but if you just keep trying to not be that person, to not be Autistic, to not be so damn embarrassing all the time, you might be acceptable someday.

Someday.

But it's never enough because the price you pay for not being your authentic self is just too high.  So you learn to hate yourself. You learn to wish you weren't you.  You learn to settle for people treating you like dirt because what else do you deserve?  For some of us, that never changes.   For some of us, for me, it's a constant work in progress to love myself.

But I love my son and he's like me.  We are the same, but different.  I don't want him to think that he can't be the person he was born to be.  He was born perfect and he makes my life worth living every single day.  I can't express to you the love that I feel for him because I don't even think there is a word invented for that kind of love.  I just know that loving him has helped me to accept myself too.  Loving him has opened my mind and my world to such amazingly wonderful things.  Loving him has helped me to find community, to find my people.

He has given me so many gifts and blessings, and again, I don't think there is a word in this language to accurately describe that.  It is so overwhelming and beautiful to have him in my life.

So, when I see a group saying that they are speaking for him, but talking about his life as a tragedy, a burden, a cost to society....that tells me that as his mother, I am "barely living".  No.  I do not accept that because it is so far from our reality and our lives.  He is love.  He is never hate.

Autism Speaks is hate.  They have no business talking about my amazing Autistic son like that.  They have no business talking about my friends like that.  They have no business talking about ME like that.

So, I will continue to speak out against hate.  Because I love my son.  I love my Autistic friends and I love myself.  Finally.

Nice People

I have met some really, really nice people in my community who are involved in disability advocacy. I have met a ton of nice people from my work with the library. Here's the thing though, not every nice person with great intentions are actually helping disabled people. You have to be willing to listen to us, to put your feelings aside and actually think about what you are doing and who you are doing this for. You can't get mad at Disabled people who don't just nod in agreement with everything you say and regurgitate internalized ableism back at you.

The phrase "Nothing about us, without us" is not just a catchy slogan. You can't make decisions for other people without their input. Yes, even when those people are Disabled, Autistic, or even when they are your own children. You can't make our voices second to the voices of parents and professionals. That's not how it should work, but far too often, that's how it does work.

I have to listen to a lot of dehumanizing, ableist, oppressive stuff just to be involved in my community. This is what I have to do to be "included". And when I call people out on the things they are saying and doing "for us", 9 times out of 10, I am made out to be the asshole. When I am just trying to get people to understand and recognize that disabled people, we are people! We are not burdens, we are not mistakes, we are not eternal children who exist as extensions of our parent's suffering.

Some days, it just really gets to me. The people who threaten me, or send me hate mail, I almost have more respect for them because they are at least honest with me. It's the "nice" ones, the ones who condescend to me, who think that I'm too aggressive, too political, too radical, too much of whatever, that just make me feel defeated. It's the nice people who want to cater to parents and professionals, who want to tell me that the only disability in life is a "bad attitude", who think that positive thinking and compromise will remove barriers to equality.

We have so much work to do. So much work to make life better for kids like my son, and the children of my friends and even the children of people who hate me and call me divisive and horrible. They deserve better than this. That will not happen with compromise, or with continuing the narrative that disability is shameful and tragic.

We have so much work to do.

We Always Liked Picasso Anyway: Acceptance. Love, and Self-care: #AutismPositivity2015

Practicing self care can be a challenge for a lot of Autistic people.  We are constantly told that the way we use our downtime, or the things that we enjoy are not okay.  I have spent a lifetime unlearning how to be my natural self, but the last few years since my son came along, we are learning together that practicing self care in Autistic ways is just as valid as any other way…..

My son is homeschooled and finds learning the most enjoyable when he is allowed to pursue his own interests and build upon them.  Recently, he became interested in learning about notable women and various feminist icons.   I was very excited when he wanted to learn more about Frida Kahlo, who is a favorite of mine!  

He enjoys learning about unconventional people in general, which is why I think that Frida Kahlo sparked his interest.  We talked about some of her paintings and about her life as a disabled woman of color and how all of these intersections impacted her art. We have enjoyed thinking about her symbolism and our own interpretations of her art.   Most of all, we have  just enjoyed looking and the feelings that her art inspires in us.

F’s favorite Frida Kahlo painting, “Self Portrait With Thorn Necklace And Hummingbird”.

We thought it would be fun to take a break from our daily routine and practice a little bit of self care inspired by Frida Kahlo and do our own self portraits.   While my son is a fast worker, I like to take my time, so mine is still not quite finished yet…….

“Self portrait of F in front of a dragon cave with orbs”

Unfinished self portrait of me, a close up of the also unfinished  face because the rest is not anywhere near ready to share!

We talked about the other ways that we like to practice self care.  My son enjoys watching videos of his favorite video games “to get better at them”.  He like snuggling with his cat, Sweet Dee, and playing Scrabble with me in our quiet place.  

Our Scrabble board, where we don’t care about rules and “gigapyro” is a legit word

F, snuggling with Sweet Dee!

Self care= being outside and creating magical spaces like this fairy garden in our front yard.  Yes, fairies are real!

For me, self care is the ability to be outside in nature, hiking in the woods or at the beach and we are so lucky to live near both!

F and I, on a hike last summer posing by a sign near Wallace Falls that says “Come into the light of things. Let nature be your teacher. “ -W Wordsworth

Self care also means surrounding yourself with people who understand you and support you. Just being with good friends or talking to them is a way for me to process and regroup.

My awesomely beautiful friend Leah Kelley and I (with Elmo!)

“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”  -Audre Lorde

Stop Telling My Autistic Kid He is Not Disabled

Many times, well meaning people have told my son he is not really Disabled.  They will tell him he is just “differently abled” or “special”.   They think they are helping him, but they are really hurting him.

Yes, it is true that he is special, and that he has many abilities, but he is also very much a Disabled person.  

Telling him that he is just “different” from other kids ignores the  very real difficulties that he faces and the barriers that society places in front of him.  My child does not see his disabilities as anything other than  neutral  and unavoidable facts.  The stigma that others see in labeling him as disabled is the value that they are placing on the lives of Disabled people.  It has absolutely nothing to do with who he is and everything to do with their own ableism.   

When others tell my son that he is “different, not disabled”, they are erasing an important part of his identity.  It is not the only thing about him, but it is a big part of him.   When they deny this part of his identity, they are teaching him to be ashamed of a part of himself.  They are telling him that there is a part of him that he should not be proud of.  While that may not be the intent, that is the message.  

My son is Disabled and Proud.  He is proud of who he is and of the body and mind that are his own.  He is learning how to make his way in this world, a world that is not as welcoming or accepting as it should be to people like him.   He is learning about things like ableism and oppression and how those things are not his fault.  He is discovering the social model of disability and the neurodiversity paradigm.   He is finding community and friendship with others.   He is learning about Disability culture and Autistic Pride.  He is learning that who he is, who he was born to be is not a mistake.   He is learning of the worth in diversity and the value in each of us.   

People: stop trying to take that away from him.

Telling him that he is not Disabled is doing him no favors.  It is actively harming him.  My son is proud and he practices damn hard in spite of the messages that society is giving him about disabled lives.    

Denying his disability will not remove the barriers that make his life difficult.  It will not change the hearts and minds of those who will see him as less than.  What it will do is teach him shame.  That is not something I want for him, or that most people would think is okay to teach a child.  I want him to grow up strong and proud, and honoring of all the things that make him uniquely him.  

Image: Square with four parts consisting of various disability related symbols including, a person using a wheelchair, an outline of a person's head with a brain colored in, two hands using ASL and a figure walking with a cane.  Text over images reads:  Disabled & Proud

#AutismSpeaks10 years of hate against #ActuallyAutistic People

This is my son, happy and stimming.

 

Image:  White text reads #ActuallyAutistic Spinning & Stimming

Image is a young Autistic child with dark hair and fair skin, a red shirt, 

dark hoodie and bright sunglasses. He is upside down, spinning in a round 

spinning toy at the playground

This is the kind of person Autism Speaks wants to prevent from being born. This is the kind of person that they call a burden, and lament that he won't die of autism, he'll just live a normal lifespan and suck up all the resources because he needs so much support. 

This is the kind of person who Autism Speaks says is a mistake. 

This is the kind of person who Autism Speaks is fighting instead of helping, supporting, accepting and knowing, let alone even listening to him. 

This is also the kind of person that I am, and so many of my friends are. 

We are Autistic and the rhetoric of Autism Speaks, it hurts us every day. 

If you support Autism Speaks, you support hate. You support an organization that takes from our communities and says that this beautiful face, this wonderful life should never have been and does not deserve to be. If you support Autism Speaks, I'd like you to remember this face and all the joy he has brought to so many people, all the value his life has and tell me that the way they talk about us is okay. This face, this amazing human that I am so lucky to know and love and have in my life, this is why I boycott Autism Speaks. 

An Autistic Kid's Thoughts on Inclusion.....

For many years, we tried to make school work for our Autistic child.  He had some successes, and a lot of good teachers, along with some really horrifying experiences and some staff who just did not get it.   When we decided to homeschool, my son was excited, but I was pretty terrified.  I have made some mistakes, but overall it is turning out to be such a positive experience for the both of us.  Admittedly, this is not a choice that everyone can or should make, so I am only speaking of our own experience with homeschooling.

One of the stories that we read this week in homeschool was about a little girl with a physical disability who was new to a classroom.   The story was overall a positive one, with characters asking questions about disability and eventually, the child was accepted and mainstreamed into the class with few difficulties.   Unfortunately, this is not a reality for many children with developmental or intellectual disabilities.  And my son knew it firsthand.

This was an opportunity for us to talk about my son’s own experiences with school.  He has been included, mainstreamed and put in a segregated classroom….due in part to how much we have moved in the past few years and dealing with various school districts with wildly different views on inclusion and the value of Disabled students.

He wanted to share his thoughts on this topic, so he wrote about it:  

Image:  Orange text reads “People shold be allowed to learn in the ways that are best for them.” -F, age 10.  Text is on dark textured background with orange/yellow stars scattered in the lower right and upper left corners.

My son’s thoughts on the difference between mainstreaming, segregation and inclusion:

Inclusion is good because it lets you take breaks when you need to and you are supported in a helpful way.  Mainstreaming is neither bad nor good because you may or may not be supported very well.

It was terrible to be mainstreamed.  I didn’t get any breaks except for lunch.  People did not really understand me.  I am not so sure they tried to understand me.   I was not supported.   It made me disappointed, depressed and sad sometimes.   It was because I was not helped.  

When I was in a segregated class that was very terrible.  Nobody understood me very well.  I wanted to be included, but that never happened.   It made me feel the same as when I was mainstreamed.  

I think inclusion could be a good thing.

I think it would look like a room where people share their creative thoughts and have a really nice teacher.   It also there would be a lot of artwork with everyone being so creative.  People should be allowed to learn in the ways that are best for them.  

For kids with disabilities, people should try to support them.  I think it would feel pretty good for kids to be thought of as a valuable person.

Normal

“Is it wrong that I wish my kid was normal?”

I come across this question a lot in autism parenting groups.   My honest, immediate answer?

Yes.

Yes, it is wrong to wish that your kids were “normal”.

I say this after a lifetime of being the one who was not “normal”, but who lived with knowing that most people around me, including my parents wished that I was.  

I have a lifetime of “Why can’t you just do this?”  or “How can you be so smart but so stupid?”, “Don’t you know how hard this is for us?”  and  “Why can’t you be more like other kids?” behind me, so yes, I think it’s bad parenting to wish for your child to be someone that they are not.  

Children are very perceptive, much more intuitive than we often give them credit for.   When you are busy mourning for a child that never was, that will never be, your children are learning that they are not good enough as they are.  The child you want, is a child that does not exist. It’s a child that yours can never be.

Do you know what it is like growing up knowing that the accommodations and supports you need are just an inconvenience to those around you?   The tools that you need to be successful in life are just too much for other people to deal with.  You’re just not worth that extra effort.  That is what we hear when you complain about how hard it is to accommodate and understand.   That is not to say parenting is easy, because it is not.   Parenting is never easy.  That is not the fault of our children.

Imagine what it is like being pushed to speak when you literally can’t do it.  When you are constantly ignored and even punished for the way that you are actually able to communicate because it doesn’t look normal.  

Imagine how it feels for your children when you say these things and people sympathize with you, but seldom with us,  and tell you that it’s okay.  It’s okay to wish your child was different.   Because being who they are, it’s not normal.  It is flawed, it is damaged, it is broken.  At least that’s what we hear when you wish we were something else.  

Imagine how it feels to see the entire world talk about what a burden you are, how unfortunate it must be to have to raise a kid like you, how we need to find a way to fix you. Imagine considering what you cost to society for existing. Now, imagine your parents saying the same thing. How will the world treat us when our own parents think that who we are is something unfortunate that is being done to them?

When you say that you wish your child was normal, you are telling your child they are on their own.   

No child deserves that.

Autistic people have enough problems with society seeing us as less, we don’t need our parents to join them.  We need our parents to stand beside us, to push back with us.  

We need our parents to tell the world to make room for all kinds of people, all kinds of communicators, all kinds of brains.  

We need our parents not just to accept us as we are, but to value us as we are.  To love every part of us and tell the world that we are loved.  

They need to show the world that diversity is beautiful and there is a place for us too.   Because not only are we watching, but the world is watching too, and they are learning how to treat us by your example.

We need you to be on our side.  

Image: White text reads: "We need our parents not just to accept us as we are, but to value us as we are.  To love every part of us and tell the world that we are loved.  They need to show the world that diversity is beautiful and there is a place for us too.   Because not only are we watching, but the world is watching too, and they are learning how to treat us by your example."

Autism Speaks Celebrates Ten Years of Stigma & Working Against The Autistic Community

TW/CW: Autism Speaks rhetoric, talk of eugenics, hate speech against Disabled/Autistic people

Image:  Light colored text reads: "Nearly two-thirds of children with autism have been bullied." -from Autism Speaks website When the biggest autism advocacy organizations are still using the rhetoric of hate and fear in regards to our lives, is this shocking?  Autism Speaks, you are supposed to be on our side, but you work against us.  You call us burdens and talk about how much we cost to society.  If that's not bullying, I don't know what is.  Text is on multicolored faded vertical stripes.  

Apparently, Autism Speaks is celebrating ten years of speaking for Autistics while actively silencing and stigmatizing us.   Recently, they posted a list of things they have accomplished in the last ten years on their website.   As you might expect, it was extremely problematic, disrespectful, inaccurate, even full of some outright lies, and most importantly and predictably, without the input or wisdom of any Autistic people. Here, I do my best to pick apart what they have said and offer my own suggestions and input.  

Will they listen?  

Probably not.  

I’m Autistic after all.  

Autism Speaks speaks for us, and my response follows.

“1. Autism’s prevalence has skyrocketed.

Ten years ago, autism’s estimated prevalence was 1 in 166. Today it’s 1 in 68 – an increase of more than 100%  in one decade.”

1. More informed professionals are better able to identify Autistic people than in the past.  Autistic people have always been here, but with different labels, institutionalized, segregated from society or living their lives without appropriate supports.  

http://aquietweek.com/2014/02/23/autistic-history-my-grandfathers-story/

“2. Direct screening suggests that autism’s prevalence may be even higher.

In a landmark study funded by Autism Speaks, screeners went into schools in South Korea and found 1 in 38 children affected by autism, most of them previously undiagnosed. Autism Speaks is now working with  the CDC to conduct a similar direct-screening study in the United States. “

2.  The Korean study was based on parent reports.   Only 63% of parents out of 55,000 responded to the survey.  Researchers also pointed out that parents of Autistic children were more likely to fill out the survey.  In addition to that, the survey identified Autistic characteristics in children.  Those children may or may not fit the criteria for an autism diagnosis.

"It doesn't mean all of a sudden there are more new children with (autism spectrum disorders)," said co-author Dr. Young-Shin Kim of the Yale Child Study Center. "They have been there all along, but were not counted in previous prevalence studies."

Do you even know what autism is?  

http://neurocosmopolitanism.com/what-is-autism/

“3. Autism can be reliably diagnosed by age two.

Because earlier intervention improves outcomes, Autism Speaks is redoubling our efforts to increase early screening, especially in underserved communities.”

3.  Autism Speaks needs to stop perpetuating the myth of a “developmental window” and pushing parents to put their toddlers into therapies that are the equivalent of a full time job.  We do need more resources and supports in under-served and marginalized communities.  Autism Speaks could do that if they were more responsible with their budget.  They need to prioritize the needs of individuals and families instead of trying to cure or fix what is not broken.

So, where is the money going?  How much is spent in our communities, especially our most vulnerable and marginalized communities versus how much is spent investing in “research” that is basically eugenics?:

http://autisticadvocacy.org/wp-content/uploads/2014/09/AutismSpeaksFlyer2014.pdf

“4. High-quality early intervention does more than develop skills.

Early intervention can  change underlying brain development and activity. It’s also cost effective as it reduces the need for educational and behavioral support in grade school and beyond.”

4.  You can’t change my neurology.  I am Autistic and training us to “act normal” does not work.   Listen to Autistic people instead of trying to speak for us and fix us!  Stop talking about how much we “cost” for needing support.  I need a lot of support, as do many of my Autistic peers.  Some days I need more support than others, but my life is always worth living.   Being Autistic is not a problem, but ableism and the fact that the biggest autism advocacy organization consistently refers to us as burdens and drains on society, sure as hell is a problem!  

http://ollibean.com/2014/09/14/attitudes-grading-people/

http://yesthattoo.blogspot.com/2013/02/ableism-is-to-blame.html

“5. Behavioral therapy for autism can transform lives.

Though children with  autism vary in how far they progress with  behavioral therapy, we now have solid evidence of its benefits. This has enabled Autism Speaks to successfully advocate for health coverage of behavioral health treatment, now the law in 38 states and counting. Now many families are getting desperately needed therapy that was once denied.”

5.  Behavior is communication.  Stop trying to force us into “behavioral therapies” that deny our dignity, autonomy and humanity.  ABA and compliance based therapy is NOT the answer.  Love, acceptance and respect for ALL  human diversity is.  

http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html

https://unstrangemind.wordpress.com/2013/01/27/no-you-dont/

http://loveexplosions.net/2013/01/30/the-cost-of-compliance-is-unreasonable/

“6.One third of children and adults with autism are nonverbal.

Autism Speaks continues to support research on  the best uses of assistive communication devices and has donated thousands of the devices to individuals and families who could not otherwise afford them.”

6.  Some of the best people I know are non-speaking.  I don’t understand why ⅓ of all Autistic people being non speaking is a problem for you, Autism Speaks.   Because it is not.  Lack of support and resources, that is the problem.  

You can do more, Autism Speaks.  You can stop trying to fix Autistics, start respecting that all communication is valid, and start supporting more non speaking Autistics with access to AAC instead of spending millions to try to prevent us from being born.  How many  more Autistic people could you help if your focus was on support instead of prevention?

http://www.everyonecommunicates.org/aacintro.html

http://autismwomensnetwork.org/not-good-enough-autism-speaks/

“7. Assistive communication devices encourage speech in some nonverbal children.

An Autism Speaks-funded study dispelled the belief that nonverbal children with autism who don’t speak by age 5 will remain nonverbal for life.”

7.  Autism Speaks needs to recognize that ALL communication is valid. Autistics who do not speak, who have difficulty at times with verbal speech, or who prefer to communicate in non traditional ways need to be supported, not forced to talk.  For many Autistic people, spoken language is difficult and uses too many of our resources.  Put the focus on respecting and supporting all forms of communication, not on talking.

http://timetolisten.blogspot.com/2013/10/if-you-dont-use-your-words-you-wont-be.html

http://www.huffingtonpost.com/ariane-zurcher/life-with-autism_b_2005489.html

“8. Autism-related GI disorders are real.

Research by the Autism Speaks ATN revealed that half of children with autism have GI disorders and the pain can  worsen behavioral symptoms. The Autism Speaks Autism Treatment Network has developed effective treatment guidelines for pediatricians and tool  kits for parents.

9. Autism-related sleep disturbance is common and treatable.

Thanks to research funded by Autism Speaks, we now have evidence-based medical guidelines and tool kits to help parents improve the sleep of those with  autism.

10. As many as one third of individuals with autism have epilepsy.

The potentially dangerous seizures are not always obvious without specialized testing.

11. Autism can affect the whole body.

Seizures, disturbed sleep and painful GI disorders are just  some of the medical conditions commonly associated with autism. The Autism Speaks Autism Treatment Network is dedicated to advancing a “whole person” approach to autism healthcare.”

8-11.  Co-occuring conditions are NOT Autism.  Yes, it is important to address and acknowledge the medical needs of Autistic people, but do not confuse separate diagnoses with autism.  

“12. Whole genome sequencing can guide personalized treatment.

Autism Speaks’ MSSNG program is changing the future of autism through the genome sequencing of thousands of affected families. Already, this  work, which is being stored on  the Google Cloud Platform, is producing medically valuable information and identifying targets for the development of new autism medicines.”

12.  As Autistic people have stated many times, we are NOT MISSING!  From the name of the program to the eugenicist implications of this research, you are not helping Autistic people.  In fact, you are ignoring the very real needs of Autistics right now in a quest to prevent more of us from ever being born.   

http://autisticadvocacy.tumblr.com/post/104787330327/we-are-notmssng

“13. Environmental factors can play a significant role.

Experts once believed that autism was almost entirely hereditary. Then research with families participating in the Autism Speaks Autism Genetic Resource Exchange showed that non-inherited influences on early brain development account for nearly half  of a child’s risk for developing autism.”

13.  Wow, too bad that is just not true:  

http://thechart.blogs.cnn.com/2014/07/22/genetics-play-a-bigger-role-than-environmental-causes-for-autism/

“14. We’ve begun to identify autism’s environmental risk factors.

These factors include maternal infection and high exposure to air pollution during pregnancy. And we now know that prenatal vitamins with  folic acid can  reduce the risk of autism if taken before conception and through pregnancy.”

14.  Autism is a natural part of human diversity.   “Reducing the risk” means what exactly?  Preventing more Autistic people from being born?   The “links” between folic acid and exposure to air pollution are not proven.  They are hypothesized by various studies, but not proven.  

Image: White text outlined in black reads "Bro, do you even science?" Text is on photograph of Bill Nye and Neil deGrasse Tyson who both look incredibly annoyed as they sit in front of two microphones at a table.

“15. Nearly half of those with autism wander or bolt.

Autism Speaks has taken the lead in promoting wandering prevention and recovery through the funding of programs that increase awareness, train first responders and teach water safety.”

15.  Typically developing children also wander and bolt.  

Resources should be focused on accepting all communication, and giving Autistic children access to AAC and the ability to develop self-advocacy skills instead of just being trained in compliance.   Many times Autistic children wander and bolt to avoid situations that are overwhelming or hostile.  

First responder training, while seemingly a worthwhile goal RARELY works.  If it did, Disabled people would not be disproportionately affected by police violence.  

http://theautismwars.blogspot.com/2014/08/why-autism-training-for-law-enforcement.html

Teaching water safety is definitely something that could benefit Autistic children. Autism Speaks, can you invest some of the money you are using to prevent people like me from being born and put it back into our communities so that more Autistic children will be safe now?  

“16. Nearly two-thirds of children with autism have been bullied.

Autism Speaks has partnered with  the National Center for Learning Disabilities and others to raise awareness and combat bullying of special-needs individuals.”

16.  When the biggest autism advocacy organizations are still using the rhetoric of hate and fear in regards to our lives, is this shocking?  Autism Speaks, you are supposed to be on our side, but you work against us.  You call us burdens and talk about how much we cost to society.  If that’s not bullying, I don’t know what is.

“17. Most adults with autism (84%) remain living with their parents.

Autism Speaks is advocating for federal and state policies that will increase community living options for adults with autism.

18. Nearly half of 25-year-olds with autism have never held a paying job.

Autism Speaks is working to increase vocational and post-secondary educational support for young adults with  autism, and is working with employers to expand job opportunities.

19. Each year, an estimated 50,000 teens with autism age out of school-based autism services.

Autism Speaks continues to work with  public and private partners to provide the support that individuals with  autism need to successfully transition into adulthood and become valued and valuable members of their communities.”

17-19.  How are you doing this?  What programs are you developing to put in place to help us?  Are they led by Autistic people?  Are the things we want considered or are you talking about us, without us again?  

http://goldenheartedrose.tumblr.com/post/89338501188/autism-speaks-masterpost-new-updated-6-20-14

“20. The cost of autism across a lifetime averages $1.4 million to $2.4 million.

These costs, which increase with  intellectual disability, place a tremendous burden on  families and society, but can  be dramatically reduced with high-quality interventions and adult transition support.”

Tremendous burden.  

Wow.  

(I also think it’s important to point out that if you don’t over-therapy your kid to the point of not allowing them to enjoy their childhood, the cost of raising your Autistic child will go down a whole lot. )  

http://www.autistichoya.com/2012/05/you-are-not-burden.html  

http://autismwomensnetwork.org/is-autism-speaks-a-hate-group/

We are more than burdens on our families and society.   You talk about Autistic people in such disrespectful and dehumanizing ways.   Your hateful rhetoric has real world consequences.  So much that The Autistic Self Advocacy Network has had to create an anti-filicide toolkit in the hopes of preventing more of our parents and caregivers from killing us!

http://autisticadvocacy.org/anti-filicide/   

When you call us burdens, and reduce us to a dollar amount, tell us that we cost society too much money for existing, there is blood on your hands, Autism Speaks.  

https://sites.google.com/site/pwddayofmourning2014/the-list

People are listening to you, and what you have done with that great responsibility is to devalue our lives and tell the rest of the world that we don’t deserve to be in it as we are.  

You have the power and the resources to change the way the world sees Autistic people.  We, along with our families are asking you to take that power and make the world a better, fairer, more accessible and friendly place for Autistic people.  Stop punishing us just for existing.  We are more than an inconvenience to you.  

Autism Speaks, the time for you to shut up and listen to Autistic people is long overdue.