Tuesday, February 10, 2015

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."
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Sunday, February 1, 2015

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.  


“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.




Do you even know what autism is?  


“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?:

“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!  

“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.  

“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?

“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.

“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.   

“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:  

“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.  
Bro Do You Even Science_.png

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.  


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?  

“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. )  


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!


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.  
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.
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Thursday, January 29, 2015

The Media Has It Wrong About Autism And PTSD

In 2009, a study at the University of Wisconsin-Madison claimed that “autism moms” have PTSD like symptoms similar to combat veterans.   Recently,  a FOX station in Houston aired a story with an “autism mom” that claimed that “living in continual crisis”  with her Autistic child caused her PTSD like symptoms.  The story cited the earlier study.
There were many problematic aspects to this story.   
Obviously.  

First of all, I don’t buy the whole “Warrior Mom” thing.   It’s gross.  It’s ableist and it’s incredibly disrespectful to your children.  The entire story didn’t even attempt to understand the point of view of the Autistic person.  These types of stories rarely do.  Her Autistic child is non speaking, and we are told that he is unable to communicate.   

I’m sorry, but everyone can communicate.  Unless you are dead or unconscious, you are able to communicate.  It might not be spoken language, but that doesn’t mean there is no communication.  It just means that the people around you aren’t working hard enough to make sure that you are being supported and understood.  Is that the fault of the Autistic person or the fault of the people who will only accept traditional, spoken forms of communication?  
It would be hard to pick apart EVERY offensive and ableist thing about this story, because there is just SO MUCH WRONG WITH IT.
Is parenting an Autistic kid hard?  
Yes.  
But so is parenting ANY kid.  Parenting is stressful. It is hard.  If parenting were without challenges and hardships, CHILDREN WOULD NOT NEED PARENTS TO RAISE AND GUIDE THEM. Supporting your kids is the right thing to do, even when it is difficult or stressful.  

BECAUSE THAT IS WHAT A GOOD PARENT DOES.   

It is literally the bare minimum that our kids deserve.  Parenting is not something that is easy, but that is not our children’s fault.   I have said it before, but parenting is a humbling experience.   We parents do not know everything, but it’s our job to do the best that we can without tearing our children apart because it’s harder than we thought it would be.   If we talk about our children as a burden and a crisis, we are not building them up or loving them unconditionally.  We are tearing them down and telling them that we are not in their corner, we are not on their side.  
It is the ultimate betrayal.  


I do want to talk about one thing in this story that is often ignored.  PTSD and autism are a real problem, but not because of what we do to our parents, but because of every Autistic adult I know, including myself, I don’t know one that does not have PTSD due to being treated like a burden or a problem that needed to be fixed for their whole lives.   That’s the story the media needs to tell.  The effects of “treatments” and therapies, the effects of being talked to your whole life like you are causing everyone around you to suffer.  The effects of never being good enough, even when you are doing your best.  Your best isn’t “normal”.  Your best is just being who you are, being Autistic, and it’s not enough.

When you treat your kids like they are a problem just for existing while Autistic, you are teaching them ableism.  They are internalizing it.  They are absorbing all of those messages about autism that you are telling the world.  Even if you don’t think they are, they are listening.   They are watching, they are hearing.   What kind of messages do you want them to learn about themselves?

What you tell the world about them is how the world will treat them.   If their own parents are telling people they are a burden and a crisis, why would complete strangers give a damn about them or their rights?   

Autistic people deserve better.  

Your kids deserve better.   
Image: Green text reads : "I have not met another Autistic person who did not have PTSD from being treated as a burden or a problem that needed to be fixed for their entire lifes. That's the story we need to be telling. autistictimestwo.blogspot.com Text is on olive green/light purple paisley background.
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Wednesday, January 7, 2015

Citizen Autistic



Citizen Autistic is an amazing documentary film directed by William Davenport that I have recently purchased for the library.   It features many prominent activists in the Autistic community such as Zoe Gross, Ari Ne'eman, and Landon Bryce. The film talks about how many organizations (such as Autism Speaks) and some parents in the autism advocacy community actually work against Autistic people.

Right now, the film is streaming for free on Hulu.  I highly recommend that anyone who cares about Autistic people watch this film!

I have a lot to say about Citizen Autistic, but I am going to save that for a special event that I am coordinating with Leah Kelley at 30 Days of Autism!

Leah and I have previously done live tweets together of the really horrible Autism Speaks propaganda film Sounding The Alarm: Battling the Autism Epidemic, which I wrote about at Autism Women's Network.  We have also live tweeted about the very awesome film Vectors of Autism, that Leah wrote about on her blog.

We are very excited to do a live tweet of Citizen Autistic on January 19th at 6 p.m PST/ 9 p.m. EST.  Since the film is currently available to watch for free on Hulu, we are hoping that many others are able to  join in the conversation!


Image Description:  Black text reads:  Join 30 Days of Autism: Leah Kelley & The Ed Wiley Autism Acceptance Lending Library for a live tweet of the   documentary film Citizen Autistic directed by William Davenport.  A film that explores the many ways that Autism Speaks works against the Autistic Community January 19, 2015 6pm PST/9pm EST @Leah_Kelley @WileyAutLibrary.  To the right of text in lower corner is an image from the film of a person in winter clothes and noise cancelling headphones holding a black sign that with an image of a blue puzzle piece with a red slash through it that reads "I am not a puzzle, I am a person.  Below that is white text that reads #CitizenAutistic


Links:

Citizen Autistic on Facebook

Citizen Autistic site

Buy the DVD at Cinema Libre

Watch Citizen Autistic on Hulu

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Wednesday, November 5, 2014

Faces

Another child is dead.  Another parent is getting sympathy as if the life of her beautiful Disabled child meant nothing.   


We are told to walk in their shoes, the parents, the murderers.   Over and over the pattern repeats. Their shoes, their excuses, are flung around, insulting the memory of the deceased.  Nobody cares about the victim’s shoes.  They are Disabled, they can’t have shoes, they can’t have value.  They don’t deserve to live.  
In 2012, Melissa Stoddard died.  (TW, child abuse in that link) She was Autistic and her father and stepmother tortured her to death.  She was eleven.   Others spoke of her passionate and enthusiastic nature.  I always wanted a daughter, and I always thought if I had a daughter, she’d be a lot like Melissa.  Maybe that is why I think of her so often.  
Of all the murders, of all the names on the list, Melissa Stoddard has been the one whose face I see most often.   Descriptions of her make me think of my own son, but also of me at her age.  Pictures of her haunt me, her eyes so large, so pretty and seem so full of curiosity and wonder.  I have a hard time looking people in the eye, but I think that eyes are gorgeous.  Dark brown eyes like Melissa Stoddard’s eyes, so bright and beautiful.   Her smile makes me think it would be hard not to smile back.  Impossible, even.   I see her face a lot.  And I am not normally good with faces, with recognizing people, especially those I don’t know in person.  Her face though, it is one I will never forget.   
Before Melissa Stoddard was brutally murdered, I cared about disability issues.  I cared about autism acceptance.  I talked about neurodiversity, I talked about a better way to parent Autistic children, more respectful ways to think about Autistic and Disabled lives.  I cared a lot.   But when Melissa Stoddard was murdered, something inside of me changed.   
I knew that talking wasn’t enough, but I didn’t know what to do to help make the lives of Autistic people better.   It was too late for Melissa Stoddard, and too late for so many others.  
My local community is very small.  The library that I run is even smaller.  There are times when nobody wants anything to do with what I am offering, which is acceptance.  It’s what I think is a better way.  Learning from Autistic adults, learning from Disability activists and advocates who have been changing the world behind the scenes for so long.  Most people don’t know anything about Disability History.  They know even less about such things as Disability Pride, Disability Justice and Rights.  Many people even laugh at me or tell me I’m a terrible mother for teaching these concepts to my Disabled son.  Because to them, disability is shameful, it must be “overcome”.   To me, and to my son, it is a source of pride.  And I know it can be to you, to your kids, to our communities.  
I get discouraged at times, because these ideas are still seen as somewhat radical.  The negativity I face, it does hurt.  A lot.


The times I get discouraged, I see Melissa Stoddard’s face.  I will always see her face, because her life mattered.  I see the faces of so many, and now I will see the sweet face of London McCabe too.  I wish I had seen their faces as adults, as activists, as advocates, or just as everyday people who are living their lives the way they wanted to.   
But I can’t.  

And that breaks my heart every day.  

 Their lives deserve to be celebrated. I want to live my life honoring theirs. In my own small way, I hope that I am able to do that, but I know that it will never be enough because I can't bring them back.



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Tuesday, November 4, 2014

A 10 Year Old Talks About Disability Pride.


October is Disability History  Month in Washington state.  For homeschool, we talked a lot about Disability Pride and at the end of the month, were lucky to be able to go to Bellevue College to see Lydia Brown speak.   These are my son's thoughts on Lydia's speech, and all that we talked about during the month:  




My Thoughts on Disability Pride and Seeing Lydia Brown, by F:  

One day, I went to see Lydia Brown at Bellevue College.   Lydia Brown is Autistic and a student in college.  Lydia is an activist for disabilities.  They talked about Disability Pride and other stuff about disabilities.   

They talked about how people view disabilities.  They talked about how some people think disability is something that needs to be fixed.  Some people see the absolute opposite and say disability is natural.   I think I am natural.  

They also talked about pride.  I think Lydia would be in favor of how proud I am to be Disabled.  

I think Disability Pride is pretty cool.  We can do stuff that people don't even think of.  

Autistic people can have the power to change the world.  I can change the world by inventing things.  Or I can be the next president.  

People who say you should not be proud because you have a disability are total and complete jerks.  I want people to know that so those jerks think twice about what they say.  

It is a lot good to be different.  I think I am different sometimes.  I am Disabled.  

My favorite part about the talk was that I was allowed to move around during the talk.  Some people don't like that, but they were allowing us to move around.  They were pretty accepting of the way people move around.   

My mom showed me this quote by Neil Marcus: 

"Disability is not a 'brave struggle' or 'courage in the face of adversity'.  Disability is an art.  It's an ingenious way to live." 

I think that means disability is not to be made fun of but to know that you have power.

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