S.R. Salas for @KateWinsletGHF “Awareness to Acceptance: It’s A Process”

27 Mar
March 27, 2014

When I was asked to write a piece for Kate Winslet’s Golden Hat Foundation I was beside myself. When I learned it would be for April – Autism Awareness ACCEPTANCE month – I experienced a non-verbal moment. Seriously.  I recently began following @KateWinsletGHF on Twitter because I liked what I was seeing: Messages of #posAutivity and respect! When I had the opportunity to speak with someone and learn about the Foundation, its background and mission, I was genuinely moved. Oh! And did I happen to mention they have Autistic people working for the organization AND they ask input from Autistic people AND they actually listen to that input! YaY!! So, please, if you’re not yet following them, go check them out! ;)

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Advocacy

Being the parent of disabled children, I will have to say I unknowingly began advocating over a decade ago. At the time I didn’t realize my role was any different than what other Moms were doing for their children – i.e. I was just a Mom being a Mom - because my oldest child had invisible disabilities I had not yet discovered. About 7 years later and two more children into motherhood, my role began to evolve. It was obvious that I was no longer doing what all the other Moms were doing because my son’s disabilities were not just the invisible kind. His needs were much more than his older sister’s and more accommodations were required. A couple years later my youngest daughter’s disabilities became apparent and my different style of parenting showed for what it really was. I was in fact an…

Advocate

(a person who publicly supports or recommends a particular cause or policy)

This article is not going to be a checklist of deficits and delays, but I want to share with you how I got where I am today. My oldest daughter was diagnosed with Asperger’s Syndrome, my son was diagnosed with autism and my youngest daughter was diagnosed with a visual processing disorder with the possibility that she may be on the spectrum as well. Oh! And for those of you whom I have yet to meet, I am Autistic, too.

My role as an advocate evolved even further a couple years ago when I went from a Mom advocating for her kids to an Autistic person advocating for autism acceptance. During that time I participated in the Virginia Board for People with Disabilities (VBPD) Partners in Policymaking program, and my evolution continued. I became an advocate for disability rights. And further still a few months ago when my status as an advocate changed to…

Activist

(a person who campaigns for some kind of social change)

 

Awareness

Awareness is important, it tells us that something is out there and we need to know about it. Since April is Autism Awareness month I thought I would share with you why I have never advocated for autism awareness. The reason is this:

Knowing that autism is ‘out there’ is not enough.

If you have autism in your life, whether you are Autistic yourself or you have a child, sibling, parent, partner or friend who is Autistic, then you are aware of autism. If you are an educator, healthcare provider, professional, or aid to Autistic people, you are aware of autism. And if you watch the news, read magazines, use the internet, read books and blogs on the subject, then you are…

Aware of autism.

Lots of awareness going around these days and not nearly enough acceptance. For example, a few months ago I wrote a blog post on Stimming. I would not normally quote myself, but I was later asked to come up with a short bit for a meme sharing what autism acceptance meant to me, so I pulled this quote from my blog:

“When we can say we are a society that’s not merely aware, but that’s actually in acceptance of autism, then our behaviors will be recognized as characteristics of a person, not symptoms of a disorder.”

I was not trying to be profound I was simply offering what I considered logical information. I cannot tell you how many times that meme was tweeted, linked to, ‘Liked’ and shared on Facebook. It was as if I had discovered a real live unicorn! But to me it just made sense. I was asked my thoughts on autism acceptance, and that was the idea that came to me…

We have to stop being ‘aware’ of people being ‘disordered’ and start accepting people as they are.

 

Acceptance

While awareness is important it only tells us what to look for. Beyond that, you have to look at the type of awareness. For instance, if I make you aware of the symptoms of autism, you will look to see what is ‘wrong’ with my kids and what is ‘wrong’ with me. Not only does this type of awareness tell us to watch out, or to beware, it tells us outright to look for the deficits and delays: Consider what is ‘wrong’ with your child and how you can go about ‘fixing’ them. This type of information focuses on the Medical Model of Disability – fix, rehabilitate, prevent and cure.

The Medical Model is based on the idea that disability is a problem located solely within the person. It focuses on individual deficit and thus sees disability as something to be fixed or cured.

Supporters of the Medical Model are constantly making us aware of what is ‘wrong’ with us and what can be done to make us more like non-Autistic folks so we will blend in…

This is not ACCEPTANCE.

And why is it I have never been handed a checklist of the positives that go along with autism? Or the abilities and strengths? Are the positives not important? Of course they are. In opposition to the Medical Model the Social Model of Disability will tell you that nothing is ‘wrong’ with us.

The Social Model is based on the idea that disability is socially constructed rather than a part of the person. A distinction is made between impairment and disability with an impairment being any physical, sensory or cognitive limitation. Disability on the other hand is the way society constructs the individual as a problem based on the perceived understanding of impairment. So a person not being able to walk is only made problematic by the fact that we have built a world that is inaccessible to wheelchairs. Therefore disability is the result of the environment rather than something within the individual.

The Social Model, which is the one I adhere to, will tell you that Autistic people – all disabled people – should be accepted as we are and accommodated in any way necessary so we can be included in society right alongside our non-disabled peers…

Don’t change the person, change the environment.

 

Disability is a Natural Part of Life

I was born Autistic. It affects how I experience emotions, learning, thoughts, relationships and the world around me, and how I’ve experienced these things since birth. It is the natural way of being for me and it’s the same for my kids. They do not know another way of life. What proponents of the Medical Model consider missing or damaged in us are things that we’ve gotten along without or had accommodated so we could succeed.

Is it really too much to ask for accommodations so we can actively participate?

Is it too much to expect inclusion so we can be a part of the community? No, it is not too much to ask, and it’s not too much to expect. It has to be acceptance over awareness. There is no choice to be made because when you truly love someone acceptance is unconditional. You love the whole person:

• Laughter • Stimming • Smiles • Echolalia • Signing • Love • Meltdowns • Special Interests • Self-Determination • Scripting • The Giggles • Tears • Non-speaking • Sensory Overload • Shutdowns • Strengths • Weaknesses •

Most importantly, you cannot try to change us to meet the expectations of others. You cannot make us feel as though we are not valued just as we are. Unconditional means that you take the good with the bad, the easy with the hard. But let’s be honest, most of the information about autism out there does not make acceptance an easy task. It makes us feel as though acceptance is a last resort, as if it is about giving up: I couldn’t fix you. I couldn’t change you, so we’ll put up with what you are.

But that’s not acceptance either, that’s submission.

My kids are beautiful just the way they are, and being disabled is a part of that beauty. It is a part of their person. Are there challenges? Are things harder for them? In some ways, very much so, but no neurology is perfect. Everyone has to work to succeed, my kids just happen to need accommodations to do so. And from a parenting perspective raising any child, regardless of disabilities, is not easy. My focus is trained on accommodating my kids, not changing them.

When my oldest daughter’s biting stim needed to be addressed (she would bite anything she could sink her teeth into – people included) I didn’t force her to stop, I re-directed her stim. I found a cool tie-dye chew ring on a black rope necklace that allowed her to bite anytime she liked without interfering with others. And when I realized my son was non-speaking, I sought other forms of communication – picture exchange, iPad – and he was taught to use them. And he liked it! It was communication that was easier and that made sense to him. And when we realized the extent of my youngest daughter’s visual processing difficulties and sensory integration issues, we did not force therapies to make her see and experience things the way non-disabled people do. We let her acclimate to the world in her time and in her way. We chose methods of working with her visually that she liked and that made her comfortable. It was not fast by any means, but it was effective and as stress-free as possible. It all boils down to this…

My kids know that nothing is ‘wrong’ with them, but that they do need accommodations to be successful.

 

Do More

Autism awareness is the least we can do, and while I appreciate the sentiment, I believe it is time for much more. Moving from awareness to acceptance is a process and for many, not a simple one. It’s having the guts to stand against the majority and tell them that they are wrong. And this is where the whole unconditional love part comes in. When we love people for who they are and we truly accept them – everything about them – we find ourselves able to let go of the worry of what others may think. We disregard the opinions and judgments of a society ignorant about what autism really is…

A differing neurology.

Autism is not a disease and it is not an epidemic. It is not a health crisis and it is not an affliction that needs to be cured. It is a different way of experiencing the world, a different way of being. You cannot love me but hate my autism, just as you cannot accept me while trying to reject my autism. When you speak of autism as a thing you separate it from me as if it is possible to do so, and it is not. I do not have autism I am Autistic.

It is time to let go of the idea that awareness is something to strive for – the end goal. I would like to think of it as more of a way to get your feet wet. And honestly, I think our feet are wet enough already. It is time to wade in, dive in, whatever works best for you. And it is time to move forward! Let’s make the month of April, for starters anyway,

Autism ACCEPTANCE Month

REFORM or EXPIRE: Either Way, #StopCombatingMe

11 Mar
March 11, 2014

Many of you may or may not know the Combating Autism Act (CAA) is up for re-authorization this September. The CAA was put into place to provide funding to ‘combat’ autism and while the language within the law suggests that it should include research into support services, the spending priorities of the law are identification and cure research. Because of this, many Autistic advocates, activists and family members are asking that Congress either reform CAA or let it expire all together. Our greatest concerns are voiced in the Autistic Self-Advocacy Network’s (ASAN) Memorandum on CAA Re-Authorization.

In a nutshell:

“(…)The law, which passed without the involvement of the self-advocacy movement, is a source of frustration for many autistic people and family members who are concerned by the law’s lack of investment in the needs of autistic adults, the overwhelming bias in favor of basic biomedical and causation-related research in federal autism research funding, the minimal opportunities for autistic people to provide meaningful input into CAA programs, and the offensive rhetoric in the law’s title.(…)”   -  ASAN Memorandum on CAA Re-Authorization

There are several concerns with CAA and three that really resonate with me. The first is the lack of funding with regards to improvements in services for Autistic people of all ages. The second and more specific are the needs of Autistic adults, which for the most part go unaddressed. And the third is that Autistic voices asking to be heard have been left out…

Again.

I’m not going to inundate you with facts and figures because they are provided in the various links in this post and because politics and public policy are not my strong suit. However, being Autistic and actually giving a damn is. With that, will someone please tell me what test we have to pass, what hoops we have to jump through and whose stamp of approval we have to have before we are considered capable of making decisions that directly affect us? Before we are given the respect we deserve and allowed to…

Speak for ourselves.

Why must we continually ask (and be denied) to be a part of the conversation about us? And why, in the minds of legislators and other ‘support’ organizations does the slogan of the Disability Rights Movement…

 Nothing About Us Without Us

…continue to be ignored? We are continually spoken about as if we don’t understand what is being said about us, and even worse, that it doesn’t matter if we do.

 

COMBATING AUTISM…

Could there be a more offensive title? Please don’t answer that! Let me say this for the umpteenth time: Autism is not an illness or disease. Autism is a differing neurology, it is a part of us like a racial or gender identity. Many try to separate us from our neurology as if it is something we caught or something that can be ‘fixed.’ Rest assured it is not contagious and for those waiting for ‘the cure’ there is not one, short of us not existing. Personally, I am aligned with the many that do not consider us damaged or broken, and find us lovely just the way we are.

Do I take this personally? Yes. Very. This whole combating autism issue is directed at my kids, my friends – ALL Autistic people. Because I cannot be separated from my neurology, and autism is actually a part of me, to claim they are combating autism is to claim they are combating me.

#StopCombatingMe

 StopCombatingMyKids. StopCombatingMyFriends. StopCombatingAutisticPeople!

 

IT’s TIME TO LISTEN

I fully support the idea that CAA either needs to be reformed or allowed to expire. The  issues I mentioned of insufficient funding for services as well as lack of support for adults are of great concern for two reasons. First, it’s just wrong. Second, and of great importance to me is the future. Our future.

“ASAN is working to try and reform CAA to align its goals with those of the Autistic community. Federal autism legislation should follow the example of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We deserve a bill that’s about supporting Autistic Americans, not combating us. Today, only 1.5% of NIH’s autism research funding goes towards the needs of adults and only 2.4% towards improving the quality of services. By re-allocating more funds to services and adults, we can help empower autistic people and our families.”  – ASAN #StopCombatingMe

Like many of you, I have Autistic children who have not had adequate services and who, in a few short years will be adults. Will better services be made available? Will those supports be made available throughout their lifetime? And because of the continued lack of acknowledgement of Autistic voices, I have to ask: Will their concerns be heard if their needs are not met?

I don’t know.

I find it deeply disturbing that I can’t answer those very simple, straight-forward questions. There has been no indication that the concerns posed by actual Autistic people will be heard anytime soon.

 

AGAIN WITH THE LANGUAGE

It seems my last several posts have focused on words, language and how we speak to one another. How one word, such as combat, can be used to define an entire initiative. Combat doesn’t make me feel good, it scares the hell out of me. I Googled it and out of 94,300,000 hits, here is the first definition that popped up:

verb
com•bat 
kəmˈbat,ˈkämˌbat/
  1. 1.
    take action to reduce, destroy, or prevent (something undesirable).

I would like to say I’m speechless, but then my post would end on an ugly note. I never end a post on an ugly note. But it’s right there in front of our faces, the name of the law says it all:

Combating Autism Act

So here is the question we all need to be asking: Is action being taken “to reduce, destroy and prevent (something undesirable).” And if so, I’m devastated because we cannot destroy autism without destroying a people. The idea of combating autism says that we are unworthy. CAA has shown in the past it’s dedication to research into identification and cures. The very lack of funding to improve services and address adult concerns supports the idea that we are unworthy in their eyes. That we are lost causes easily forgotten.

LOST CAUSES, HOPELESSNESS AND WHY I WILL NOT BE SILENT

I always hated the sound of that: A lost cause. What a sad thing to think of. It means that at one time there was hope, but for whatever reason, it’s been given up on. The more I get into advocacy and activism the more I see that living, breathing human beings, in this case Autistic people, are considered lost causes. We’ve been given up on - we’re hopeless. If not, why wouldn’t our government do everything in its power to ensure the best services possible throughout our life span? Why would the majority of spending support research into causation, prevention and cures?

The day I accept the “Lost Cause” garbage will be the day I stop advocating for autism acceptance and disability rights. It will be the day I decide that however hard I try or loud I speak it’s a waste of time, because no one’s listening anyway. And it will be the day I decide that neither the Disability Rights Movement nor the Neurodiversity Movement matter…

i.e.  Not gonna’ happen

There is only one lost cause here today and that is the idea that autism needs to be combated. It’s time to stop wasting time and other valuable resources that could go to supporting Autistic people. It’s time to…

#StopCombatingMe

LOVE not Fear: It’s A Choice

13 Feb
February 13, 2014

This piece is for the #BoycottAutismSpeaks (boycottautismspeaks.com) “Love not Fear” flashblog, and was a really hard post for me to write. It’s full of questions, a couple I can’t quite answer, and it’s filled with love, which is such an enormous thing I find it extremely difficult to write about. So, what you’re reading now is actually my 3rd attempt. Let’s hope it works or you’ll be reading my 4th.

Love  v.  Fear

I was going to share the definitions of love and fear from old faithful, Merriam-Webster, but the words seemed bland, lifeless. How can you make love and fear seem bland and lifeless? I don’t know, but check out Merriam-Webster, they did it beautifully. Dissatisfied, I went in search of something with a kick to it. Here’s what I found:

“One word frees us of all the weight and pain in life. That word is love.”  -   Sophocles

I just sat there and thought about it.  That’s a hell of a lot for one little word to live up to. But it’s true isn’t it? When we love unconditionally, we are free whether it’s for a minute or for a lifetime. I feel that way about my kids. No matter how bad a day (or week, or month) I can look at my kids and the overwhelming love I have for them frees me of all the weight and pain in that instant.

LOVE

To address fear, I consulted my friend G., who reads way too much and has the uncanny ability to pull quotes out of thin air. As usual, he did not disappoint:

“Fear is the main source of superstition, and one of the main sources of cruelty. To conquer fear is the beginning of wisdom.”  - Bertrand Russell

Fear is a horrible feeling isn’t it? It can cause anxiety, depression, anger… Hate. Fear can stop us dead in our tracks, rendering us incapable of moving forward. Again, a hell of a lot for one little word to carry. However, I’m a relatively positive person so when Russell tells us that conquering fear is the beginning of wisdom, a knowing smile touches my lips. I couldn’t agree more.

fear

 

It’s A Choice

Love and fear: two little, four-letter words with the power to sway millions. You want to be heard? You want to move the masses? Both will get the job done equally well. But you have to understand one thing first, they’re only words. Love and fear, the words themselves, are impotent. What moves millions is the life breathed into those words by a person, a group or an organization. Once brought to life by the speaker, love/fear spreads like wildfire and can rally support and build a following.

So why would one choose fear over love? If both, when activated, have the ability to motivate why would a person choose one of the main sources of cruelty over the one that sets you free? Pay close attention:

The choice exposes the speaker for who he or she really is.

Think on this: If the speaker you are listening to uses fear-mongering tactics to garner your support, what is the message? What exactly is this person (organization) trying to say that they need to scare you into following?

Fear is used to control us.

Consider this instead: Love’s message is accepting and unconditional, it doesn’t seek to control, but to support and understand.

Love is used to free us.

 

Which will you choose?

I speak with a lot of parents of newly diagnosed children and there are two words that come up time and again: Frightened and Devastated. And the questions that immediately run through my mind are: Where are you getting your information? Who made you feel this way? And then the biggee:

 Why would you listen to anyone speak of your child in a way that leaves you filled with                        fear and devastation?

 

“Where is the LOVE?”

Seriously great question posed by the Black Eyed Peas…

“Yo’, whatever happened to the values of humanity
Whatever happened to the fairness and equality
Instead of spreading love we’re spreading animosity
Lack of understanding, leading us away from unity”
        –   “Where is the Love” by Black Eyed Peas

 

In addition to the many Autistic people, there are organizations out there that will show you the love in autism (and other disabilities):

These organizations exist to support and empower Autistic people and their families. Is that love or what?!! Their messages are positive and the underlying theme:

Acceptance

Isn’t that what we’re looking for anyway? To be accepted for who we are, no exceptions? Isn’t that what we want for our children? For them to know they are loved for the wonderful, beautiful human beings they are. Is it so much to ask that they be respected and included in society alongside their non-disabled peers? That they be accommodated so they can lead successful lives?

No, it is not.

Our children are not tragic, they are not burdens and anyone who says they are (e.g. Autism Speaks – I wrote about that here and here) is using fear to control how you feel. Don’t listen, it doesn’t have to be that way and it’s wrong. There is a large and continually growing autism community that I and my children belong to that refuses to listen to fear-mongering because we know better. Our community is made up of Autistic people, our families and friends, our Allies, as well as professionals and organizations that support our wants and needs. They do not silence us, they amplify our voices, our messages. They do not speak about us, or for us. They listen to us and speak with us. The autism community I belong to…

Chooses Love 

And we want you here with us. Please! We are honored to welcome your children because they are not only your future, but ours as well.

 

 So… What’s It Gonna’ Be?

The choice is yours. You can choose to listen to those who spread messages of fear and devastation, telling you that your children are burdens and that they are tragic (and they are not)! Or you can join us instead and choose:

 LOVE and #posAutivity and NEURODIVERSITY and ACCEPTANCE 

 

“When we come to it
We, this people, on this wayward, floating body
Created on this earth, of this earth
Have the power to fashion for this earth
A climate where every man and every woman
Can live freely without sanctimonious piety
Without crippling fear.”
        – Excerpt from “A Brave and Startling Truth” by Maya Angelou

 

Wow. Yes. Exactly.

 Choose LOVE

 

 

 

S.R.Salas article for @AutismParentMag “The Boycott of Autism Speaks”

10 Jan
January 10, 2014

The following is an article I wrote for the January 2014 issue of Autism Parenting Magazine.  The very same issue in which Editor-In-Chief, Leslie Burby, announced that the magazine fully supported the  Boycott of Autism Speaks. I have always been happy to write for Autism Parenting Magazine, it’s an excellent resource. However, when I saw Ms. Burby’s editorial, I was proud: Proud of the magazine’s direction and proud of Ms. Burby for taking such a bold and positive editorial stance in support of the Autism Community.

Please show your appreciation and support to Ms. Burby and the magazine! Head over to Autism Parenting Magazine (use the link above), enter your email in the space provided and you will receive the latest issue for free! 

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The Boycott of Autism Speaks

Being Autistic and the parent of Autistic children, the boycott of Autism Speaks is an important topic that hits very close to home…

And I’m on board.

Personally, I have never been a fan of the organization, due to their lack of respect for Autistic people and their use of fear and pity to garner support – not to mention a mission hinting at eradication. Because of these things, I have ignored its existence since I first stumbled upon them. However, in November 2013 Autism Speaks created its own advocacy debacle, which put an end to my silence. Something so unsettling, so reprehensible, my status as an advocate was changed almost overnight, to…

Activist

You see there is a steadily growing movement that I am both honored and excited to be a part of, and that is the…

Boycott of Autism Speaks!

Oh, how I love the sound of that! It’s quite a tall order, I’m well aware of that, but even Rome eventually fell. We (advocates, activists, allies, disability rights organizations, families and friends) are calling upon corporate sponsors to boycott Autism Speaks. Why on Earth would Autistic people and their allies want to boycott the world’s largest autism advocacy organization?

I’m glad you asked…

Twitter Bomb: Social Media as an Ally

On Monday, December 9, 2013, I joined many in what was known as the ‘Boycott Autism Speaks Twitter Bomb.’ The idea was to spend the entire day contacting corporate sponsors that support Autism Speaks and, using Twitter, provide information about the boycott (http://boycottautismspeaks.com/) and ask them to reconsider their support of the organization. The Twitter Bomb was only the beginning. We are building momentum from supporters all over the world each day with people and organizations that are openly voicing their disapproval of Autism Speaks.

Why would Autistic people and our supporters want the world’s most famous autism advocacy organization to be boycotted? Simple, we don’t agree with the way in which Autism Speaks depicts us as a population. And we don’t agree that they (or any other organization for that matter) have the right to decide whether or not Autistic people should be allowed to exist because of a disability. How can you claim advocacy of a people you are trying to eradicate? That’s not advocacy, in fact it’s just the opposite. The following is from the Autism Speaks ‘About Us’ link on their site

“… Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, preventions, treatments and a cure for autism;”

The words I find most disturbing, the ones that scream “Warning!” are preventions and cure. If you follow my blog (http://srsalas.com/), you know I love to define words, so let’s define these two and see what Autism Speaks is talking about:

prevent – to stop (something) from happening or existing

cure – something that ends a problem or improves a bad situation

Using the definitions above from Merriam-Webster’s online dictionary, it appears that Autism Speaks is looking to end a problem or possibly, stop that problem from happening altogether. Is this support of a people? Is it advocacy?

Absolutely not.

Wake-Up Call

As parents, we have to pay closer attention to the conversation, the one being held without Autistic people (without our children). Autism Speaks’s message is laden with fear-mongering tactics. At what point was it decided that it would be okay for this organization to speak so reprehensibly about the very people it is supposed to be supporting?

“These families are not living. They are existing (…) Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future (…) And, what about their parents (…) How long will it be before exhaustion makes them ill? How long before they break?”      - Suzanne Wright, co-founder, Autism Speaks

By portraying our children as burdensome and tragic, Autism Speaks provides the illusion that they are doing the world a favor by ending our misery. These are our children they are talking about! Through a cure, it seems the goal is to rid the world of autism, but it is not the illness they imply, it is a differing neurology. When they say they want to prevent autism, what they are in essence working toward is erasure of a people. This is hate, pure and simple! And why is this organization allowed to speak openly about it?

Money talks, of course!

And it’s wrong. Unfortunately, they have lots of money and freely say whatever they like about disabled people, and they do so with little or no ramifications.

This is a dangerous monologue that needs to stop.

Close Encounters

The first time I encountered Autism Speaks was about 5 years ago. My son, Sebastian, had been informally diagnosed with autism - his formal diagnosis would come 2 years later followed by mine, and then my daughter’s. Back in 2008 their website was my first stop, mainly because I had heard of them. My visit, however, was short-lived and after about 20 minutes I had had enough. How sad I was after what I had read! Devastated! And not about autism, but about the hateful, ignorant things this organization had to say about my child! This was support? Advocacy?

Not even close.

Over the years Autism Speaks has referred to us in many demeaning ways, it’s their angle. They have called us diseased, referred to our children as kidnap victims and implied that we are gravely ill, to fuel their mission of prevention and cure. ‘Boycott Autism Speaks’ is an advocacy effort created by Autistic people and their allies who are tired of the organization’s hateful rhetoric, lack of Autistic leadership and most recently, the November 2013 debacle I mentioned above: ‘Autism Speaks to Washington – A Call for Action’ http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action penned by Co-Founder, Suzanne Wright. Personally, I found it to be one of the most disrespectful, hate-filled advocacy pieces I’ve ever seen. Autism Speaks, the very organization that claims to advocate for Autistic people describes our children as missing, burdens to our families, and account-draining home wreckers. “This is autism,” they say.

No, this is fear-mongering.

  

Watch Your LANGUAGE!

Autism Speaks uses fear and pity to wrangle financial support, and we all know what powerful motivators fear and pity are. Honestly though, how can one in good conscience dehumanize a population of people one purports to help, and have an ounce of credibility? Unfortunately that question was answered with a $25 million donation in 2005 http://www.autismspeaks.org/about-us and went downhill (for Autistic people) from there. Below are quotes from the ‘Call for Action’ that really hit a lot of us where it hurts - our hearts. 

“If three million children in America one day went missing…”  (But our children haven’t gone missing, they’re right here)! 

“If three million children in America one morning fell gravely ill…”  (But our children aren’t sick with autism, because it isn’t an illness)!

“Yet we’ve for the most part lost touch with three million children…”   (Who is this collective “we” Autism Speaks’s claims has lost touch? The parents? Because we most certainly have not)!

“We’ve let families split up, go broke and struggle through their days and years.”  (You cannot separate autism from our children, it’s a part of who they are. Blaming children with disabilities for ruining their families is damaging and dangerous language).

Autism Speaks tells us that “This is autism.’”

 Something interesting I’d like to point out is that this ‘Call for Action‘ speaks only of Autistic children. That’s strange… Is the implication that we’ve gone missing as children never to return? Because I for one am sitting at my laptop typing this, my Autistic kids in the next room. Several of my Autistic friends are on Twitter and Facebook at the moment, and some are home with their families having dinner. So in case you were adding any weight to the idea that Autistic children go missing, I’d like to assure you that we are not now, nor have we ever been missing. So why call our children ‘missing’ when they’re right here with us?

Because it’s scary and it ignores their beauty and goodness; it takes away their humanity by describing them as no longer with us.

Frightening parents with the threat of missing children is bad enough, however the ‘Call for Action’ further patronizes by claiming that our families are not living, but merely existing; that we live our lives in despair, fearing the future.

Interesting… I was never polled.

No one from Autism Speaks interviewed our family and inquired into our wellbeing. As a matter of fact, being an avid supporter and participant in boycotting Autism Speaks, I am in daily contact with many, many families whose lives are nothing like what the ‘Call for Action’ claims. So how are they able to make these blanket statements about all of us?  And since it’s not true for all of us, then who are they speaking for? Hmm… Good question because I can honestly say:

Autism Speaks does NOT Speak for my children, my friends or me.

 

Why Is Autism Speaks Continually Talking About Us Without Us?

I find it disturbing that there are no openly Autistic people in senior leadership roles within Autism Speaks. How can an organization run by non-Autistic people claim to speak for us? As I mentioned earlier, many Autistic people, and I’m one of them, very openly disagree with the organization’s mission, its lack of Autistic leadership, and its damaging language. The motto of the disability rights movement has long been

Nothing About Us Without Us!

And I couldn’t agree more! It only makes sense that if you want to truly support people you must listen to and work with them. Interestingly enough, the one openly Autistic person in a notable position with Autism Speaks, John Elder Robison, resigned in protest of Ms. Wright’s ‘Call for Action.’ You can read about Mr. Robison’s resignation here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

I wanted this to be a personal piece, a conversation between us. I don’t want to inundate you with statistics, however I urge you to read the highly respected Autistic Self Advocacy Network’s ’2013 Joint Letter to the Corporate Sponsors of Autism Speaks’ http://autisticadvocacy.org/2013/11/2013-joint-letter-to-the-sponsors-of-autism-speaks/ This letter, co-signed by a notable list of disability rights organizations, offers a clearer picture of the harm Autism Speaks is causing the Autism community.

 

What’s In A Word?

Missing. Burden. Tragic. Embarrassment. Illness. Fear. Despair.

These are not words that make me feel good. Words carry a lot of weight and Autism Speaks wields them too effectively. They artfully blend a message of advocacy and erasure as they depict us as pitiable individuals existing only as burdens to society. With their mission to prevent and cure, they talk about us as if we shouldn’t be allowed to exist. This is not advocacy nor is it awareness, and it most definitely is not acceptance. This is no longer only an autism issue, it is a disability rights issue, and a human rights issue

The following is a quote from Peter Berns, CEO, the Arc, from his ‘Open Letter to Suzanne Wright…’ condemning her language against disabled people http://blog.thearc.org/2013/11/16/open-letter-suzanne-wright-co-founder-autism-speaks/

“Unfortunately, your description of children with autism and their families is polarizing and divisive (…) Characterizing people with autism and their families as victims suffering from dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit.”     - Peter Berns, CEO The Arc

Autistic people are valuable human beings, no less than our non-Autistic peers. The Autistic people and the families that I connect with daily are not interested in cures, my kids and myself included. We do not hate what we are because we are loved and accepted by those around us. They do not speak to us of how we need to be fixed, or how we might have been better, or how they dream of a cure. Our supporters speak to us of how we enrich their lives just as we are.

Accommodation. Inclusion. Acceptance

I like the sound of these words much better. Autism is a disability, no doubt, and we need supports and accommodations in varying degrees. And this is why we advocate: For better education, more services, inclusion and acceptance, and for the supports and accommodations that are necessary so our children (all Autistic people) can live successfully in society along side their non-disabled peers. And we also advocate for the families whose love and belief in their children is essential, because families need support, too.

 

Advocacy

One of the most important phrases I learned during the Virginia Board for People with Disabilities, Partners in Policymaking program (http://srsalas.com/?p=2177):

Disability is a natural part of life.

Advocacy is about working with and supporting people with disabilities. It is not about verbally dehumanizing people, nor is it about erasing them because of their disability.

No matter the extent of a person’s disability, it is not up to Autism Speaks or anyone else to decide whether or not a human being is worthy of existence.

The next time you see an advertisement or fundraiser raising money for a cure, I hope you will take a moment and think about what that cure might mean. These are our children they are speaking of; our brothers and sisters; our families and friends!

People we love and are grateful to have in our lives!

 I hope my words have made a difference to you. I hope you will join us in support of our loved ones as we band together urging sponsors to Boycott Autism Speaks.

  ******************************

Excellent Autism Resources:

ADAPT http://www.adapt.org/

Autism National Committee http://www.autcom.org/

Autism Network International http://www.autreat.com/

Autism Society http://www.autism-society.org/

Autism Women’s Network http://autismwomensnetwork.org/

Autistic Self Advocacy Network http://autisticadvocacy.org/

National Council on Independent Living http://www.ncil.org/

Ollibean https://ollibean.com/we-believe/about-the-movement/

 

Boycott Autism Speaks Information:

Boycott Autism Speaks http://boycottautismspeaks.com/

Facebook Page https://www.facebook.com/groups/boycottautismspeaks/

Follow on Twitter @Boycott_AS , #BoycottAutismSpeaks

Sign the petition https://www.change.org/petitions/corporate-partners-supporters-of-autism-speaks-terminate-your-financial-support-of-autism-speaks

S.R.Salas post @HandicapThis – Is Autism Awareness Enough? “Black and White”

29 Dec
December 29, 2013

I was asked to guest post on the fabulous Handicap This Blog, and of course jumped at the chance! Heard of them? If not, the following is from Handicap This Productions site:

HANDICAP THIS!

“Handicap This! is a true story that started in 2001 and continues to this day. Mike Berkson and Tim Wambach hope this show will further their message of ‘Judgment Not Allowed’ and inspire all of us to do more with what we have. Handicap This! will stir your senses, challenge your thinking and wake up your attitude. It’s a look at breaking down barriers and living with handicaps – most of all about EVERYONE’S potential.”

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

BLACK AND WHITE – A POST ON THE AUTISM SPECTRUM

December 13, 2013

For a more in-depth look at autism read Renée's book.

For a more in-depth look at autism read Renée’s book.

With great pleasure Handicap This! welcomes this week’s guest blogger, Renée Salas. An author (Black and White: A Colorful Look at Life on the Autism Spectrum), writer, and passionate disability advocate Renée gives an insightful firsthand look into autism. Specifically she suggests autism acceptance over simply autism awareness.

*Note to readers: The use of ‘we’ and ‘us’ below refers to family and friends. I do not claim to speak for all individuals on the autism spectrum.

 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

 

It’s not hard to find information about autism these days: TV, magazines, books, ad campaigns. Seems like it’s everywhere…

Autism Awareness

Personally I advocate for autism acceptance, but awareness is at least a start. Interestingly enough the majority of awareness I come across is about autistic people, not by autistic people. That’s troublesome to me. Not because the information is wrong (not all of it anyway), but because much of it is being shared about a group of people without their input.

Troublesome indeed

AUTISTIC(LY) SPEAKING

I am autistic. In addition to me, all three of my children have disabilities, my two oldest being autistic as well. I am telling you of my disability because I want you to understand that what I share with you is from an autistic perspective. And that I am truly passionate about disability rights advocacy. While my focus tends towards autism, I am of the belief that in regards to disability rights…

We are all in this together.

WHAT DO I WANT YOU TO KNOW ABOUT PEOPLE ON THE AUTISM SPECTRUM?

I want you to know that we are not broken. And we are not victims. We’re not looking for a cure because we’re happy the way we are. Yes we are neurologically different from neurotypical (non-autistic) people, but it doesn’t make us wrong. It makes us…

Diverse

For some reason that’s seen as a bad thing and I disagree. I would like to offer another perspective on diversity. One I know by having children with disabilities, friends with disabilities, and by having disabilities myself. That is this. Disability is a natural part of life.

Oh, I like the sound of that.

Instead of a disorder I’d like you to think of autism as a different way of thinking, a different way of seeing, feeling, and experiencing the world.

A different way of being

 

HERE ARE SOME OTHER THINGS I LIKE THE SOUND OF:

Self-Determination (people with disabilities making decisions about their own lives)

Presumption of Competence (believing people with disabilities have knowledge, abilities, skills to do things successfully)

Communication (people with disabilities have a right to communicate through whatever means necessary: speech, sign language, assistive technology, etc…)

Inclusion (the idea that people with disabilities should be part of their communities in all things)

AUTISM ACCEPTANCE AND WHY I ASK YOUR CONSIDERATION OVER MERE AWARENESS

Autism acceptance means you accept the whole person, even those things that seem odd to you or that you don’t understand: stimming, scripting, echolalia, special interests, repetitive behaviors, etc… The things that society has deemed inappropriate and found best to put a stop to so autistic people will “fit in.” So, we will be accepted.

But that’s not acceptance.

That’s denying another person their natural way of being, forcing that person to fit a mold so that others will be more comfortable with them. It’s being made acceptable by others’ standards. That’s not acceptance. That’s reprogramming.

I don’t want to be reprogrammed.

I want to stim because it calms me and makes me feel good. I want to know everything I can about my special interest because it’s fascinating and means a lot to me. I want to bite my nails because it helps relieve my anxiety. Most importantly,

I want to be ME.

And I want to be my ME, the way I was born. And my ME has a difficult time in the world because it is neurotypical by design. So a lot of the behaviors you see that make you uncomfortable: stimming, scripting, echolalia, and so on, are the very things that help me feel comfortable in our non-autistic world.

I want to be the ME I was born to be. I’m not saying I don’t need support or accommodations. I do, and I get that. However I don’t want to change who I am. I don’t want to be reprogrammed. I want to be me, and this ME is…

A U T I S T I C

 

 

Renee Salas

More About Renée Salas:
Renée Salas is a disability rights advocate. She and two of her three children are autistic, making her a passionate advocate for autism acceptance. She is the author of Black and White: A Colorful Look at Life on the Autism Spectrum, is a frequent writer for Autism Parenting Magazine, and blogs at S.R. Salas | Autism Blog.

Renée is also the Community Liaison for the College of William & Mary Neurodiversity Working Group. Her main focus is educating people about life on the spectrum. Her work emphasizes the positives, strengths and beauty found in neurodiversity. You can follow Renée on Twitter @srsalas13 and Facebook.

- See more at: http://handicapthis.com/2013/12/black-and-white-a-post-on-the-autism-spectrum/#sthash.kEZYpjtG.dpuf

S.R.Salas post @squagdotcom What’s the difference? “Alone v. Lonely”

22 Dec
December 22, 2013

I wrote the following post especially for Squag! If you haven’t heard of it, You must check it out…

What Is Squag?

“SquagTM [skwag] is a curated, online experience for kids on the autism spectrum (and their siblings!) that allows them to initiate, explore, and self-discover. Our SquagpadsTM give parents an opportunity to learn about their kids and give kids a new way to learn about themselves, making screen time more meaningful.”

 

Alone  v.  Lonelygrey white bar

written by S.R Salas on December 8, 2013 -

 

I’ve always enjoyed being alone. My two autistic kids feel the same. And I never thought much about it until I was older and it was brought to my attention by  non-autistic people.

I talk to parents frequently about autism. I also tweet, blog and present to different organizations on the subject. One topic that comes up time and again is the idea that we are lonely.

Parents seem to worry over this perceived loneliness, so I thought I would share my thoughts with you and give you a different perspective. It is important to share that my thoughts are my own. However, when I use the terms “we” or “us” I am speaking of my autistic kids and my autistic friends, not all autistic people.

Alone(ly)

While we all share this great big beautiful planet, it’s no secret that Autistics and NTs experience the world very differently. So it should come as no surprise that our perceptions differ as well. No matter our neurology, we all have moments when we are alone and times when we feel lonely. The times it seems as if there’s no one around to lean on, or to talk to or to get what we’re all about.

That’s lonely.

So what do I mean when I say we’re alone but not lonely? Well, I mean just that. We are physically alone, but not feeling lonely.

Hmm… I think it’s easier if I show you…

A mother approaches me and points to her child on the playground: A cute little boy sitting alone in the far corner of the sandbox. Other children of all ages are laughing, playing, and running together, swinging on swings, sliding on slides and playing chase in loud, boisterous groupings.

The mother looks at me, sadness apparent on her face as she looks back at her son. He’s not running and playing with the other children. He’s not smiling, or laughing or playing chase. Quietly he sits, contentedly sifting sand from one hand to the other, back and forth.

His mother looks at me with a pained expression. Can you believe this? Her eyes ask me. He’s so lonely. What should I do?

I don’t understand.

You see, she and I both observed the same event, but we perceived it in two very different ways. I saw a little boy playing on the playground, highly focused on the task of sand sifting. No interruptions. No one telling him how to play with the sand, or imposing their rules or ideas. No kids intruding and playing with the sand wrong. And, yes, in case you were wondering:

One absolutely can play with sand  (or anything else we’re playing with)  wrong.

But while he was physically alone, he didn’t appear the least bit lonely to me. As a matter of fact, if you paid close attention, and you looked at him just right (if you looked at him autistically), he looked really happy. That’s what I shared with this Mom. And when she looked back at her son, and she looked at him a bit differently, she saw something she had missed:

He was happy doing things his way.

As Autistics, we spend a great deal of time working to understand things from a NT perspective. Our entire lives actually. And it is difficult, some things, honestly I will never understand, such as participating in a rowdy group of screaming kids running through a playground. But it’s apparent to me that that it is what they like. And that overwhelming, over-stimulating, anxiety-inducing ‘play’ is what makes them happy. And that’s lovely! It wasn’t my choice of fun when I was a child – I was definitely a sand-sifter – and there’s nothing wrong with that. We need you to try and see things from our perspective, and that means taking a step back and looking at things very differently.

And that’s the beauty in neurodiversity. That’s what makes us all individuals. It cannot be about imposing our rules and beliefs on someone else because it makes us more comfortable as a society. And it won’t always be about understanding, but I truly believe it has to be about

Acceptance.

 Consider this: If you look at us with NT expectations, you may see us as difficult or even impossible to understand. But, if you take a moment and try to experience the world as we do – and we’ll show you if you let us – you will find a unique and beautiful way of

B  E  I  N  G

 

Renee Salas is an author, public speaker, and advocate.  She is currently a member of the Virginia Board for People with Disabilities (VBPD) 2013 Partners in Policymaking program. For more insight and to ask questions, be sure to follow her on twitter @srsalas13.

 

 

Autistic History Month 2013: The History Post That Never Was

21 Nov
November 21, 2013

I’m happy to be contributing once again to Down Wit Dat’s, T-21 Monthly Blog Hop! This month’s topic: Autistic History Month

Yesssss!

 

Autistic History

I thought this post would be easy to write. I had such great plans: I’d color it with stories of Autistics past and present; who we are; where we came from. There would be so much information, too much! So I thought to myself, how can I possibly fit it all into one post?!! The ‘idea’ of our history is a big deal. Huge in fact! I proceeded to ponder the directions such a topic might take me: General history overview, specific topic, biographies… Where to begin?! It didn’t take long for the glow to fade and the excitement to dim. The more I thought on Autistic History, and what I’d like to share, I realized

I had nothing to say.

 

Seriously?

Yes, me, a 41 year old Autistic, parent to Autistic children has absolutely nothing to say about her history…

* * because she doesn’t know it * *

Well, that’s unsettling, so I thought: I’ll Google ‘Autistics in History’ and read up on some interesting facts and people of note and ‘wow’ everyone with my exciting finds! Then I reconsidered. It dawned on me that sharing Google-searched information (that I didn’t know beforehand) was no longer the point of this post, which immediately rendered this piece…

The history post that never was.

The point I need to make is that I don’t know our history, and I’m willing to bet many of you don’t either. It’s not as if you’re going to learn about it in school. And unless you had an amazingly open-minded professional during the diagnostic process, they didn’t point you in the direction of our history either - unless you were looking for a medical history of ‘autism the disorder.’ My conclusion?

Autistic History Month is a must, because it acknowledges and celebrates Autistic People and our contributions past and present.

I’ve only known that I was Autistic for about 5 years. And I only became aware of our presence online over the last year (I had always been terrified of social media and talked about that here). Our history, which I know is out there, is unknown to me. That is sad and it needs to change. I realize that falls on me, I need to educate myself and my kids.

In the meantime, Autistics should be honored for blogging about our lives, writing books and poetry about our experiences, creating beautiful works of art that tell our story, photographing our visions, filming documentaries, working toward policy changes, protesting inequities and educating people in a variety of ways about Autistic lives. It is through all of this that our multidimensional history is being written. We must continue to strengthen our Autistic presence,

And celebrate it!

 

We The People

I want my children to know Our Community, which is made up of Autistics, our families and friends and our Allies. And even more importantly, I want my children to know Our People. The most important thing that came from writing this piece was the realization that I couldn’t write a single thing about our history because…

I Didn’t Know It.

What better reason to have a month dedicated to celebrating Autistic people than to learn and share our history? Autistics didn’t just start speaking out, and logically I realize that. They’ve been doing it (writing, blogging, protesting, etc…) for years, well before I began advocating. Years before I knew that I, or my kids were Autistic - years before they were born.

I am thankful for every single person who spoke out, who communicated in some way on our behalf, because they cleared the way for newcomers, who are sharing Autistic experiences now.

I am joining these pioneers in their efforts because it’s important, and because it’s the right thing for me. But to continue on, I feel it’s imperative to know how far we’ve come, to understand just how far we have to go. It all means something: The people, the organizations, where we’ve succeeded and where we’ve failed. All of the hard work that has gone into ensuring that Autistic people are supported and accommodated, respected and included, and treated as valuable human beings (as well as all of the hard work that continues in that same vein),

Needs to be acknowledged and celebrated. 

I want my kids to understand and take pride in the fact that they are not disordered, but Neurodivergent! I don’t want them to look back and see the same clinical rhetoric that’s been regurgitated a thousand times: Red flags, symptoms, deficits, functioning labels and diagnoses. While speaking of us on those terms gives me a hell of a reason to advocate, it says nothing about US. It says nothing of our feelings and experiences, and it doesn’t describe us as the living, loving, capable people we are. Every Autistic person is a part of Autistic History and it’s up to us to learn, share and add to it, because as long as Our history remains invisible,  

It’s easier for others to ignore Our existence.

These posts brought to you by:

Add your post now!

‘This is Autism’ Flashblog: What Autism Is (to Me)

18 Nov
November 18, 2013

From the This is Autism’ Flashblog:

“This is Autism” Flashblog

Last Monday, Autism Speaks told the world that autism is:
 . . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children
. . .  a national emergency
If that’s not what autism is to you, join us on Monday November 18th for the “This is Autism” flashblog.

[ The following is my contribution to the 'This is Autism' Flashblog...]

THIS is Autism…?

A little over 5 years ago when I learned my son, Bas, was Autistic (he was the first of us to be diagnosed), I began a search for information on autism. First stop: Autism Speaks, of course, as it was the only organization I’d ever heard of. Although Bas wasn’t formally diagnosed until 7, we were informally aware by age 5. We did not participate in early intervention programs nor did we put him in traditional therapies (ST, OT, PT), hence the ‘late’ diagnosis. We just let him be a kid, accommodated his needs and supported his development according to his time-table.

I never feared for my son when he was 3 (or 4, 5, 6, 7…) and not speaking. I didn’t fear for him when I was told the extent of his developmental delays or textbook deficits (we had always focused on his skills and abilities, just like we did for our other 2 kids). And…

I never feared for my son when I learned he was Autistic.

 

Selling Snake Oil

The day I visited the Autism Speaks (AS) website was the most scared I’ve ever been in my life. They didn’t make me fear autism - well, for about 60 seconds they did, but luckily I rallied quickly. The more I read, the more fear I felt, and it wasn’t autism that frightened me. I was afraid of this colossal organization that would speak of human beings in such a derogatory way. Scarier still was a society that would allow an organization to speak this way about other human beings. And not only allow it, but advertise it and

Support it monetarily

THIS (hate) Cannot Be Autism

Autism Speaks, their mission, their words - venomous ooze. I left their website knowing I could not look to them for support or guidance. I left their website feeling they considered Autistic people unworthy and less. I left that day a changed person, an informed person. Not informed about autism, most definitely not, but informed about the tactics of ignorance and fear. Informed that with enough money an organization such as Autism Speaks could openly spew poison about a group of people because it hates what they are.

So what is the difference between Autism Speaks and a hate group?

They speak of prevention and cures, not of acceptance. Isn’t preventing a group of people from existing, merely because one deems them not acceptable, hate? I believe it is - and that is something that every single one of us, concerned with disability rights and human rights, should be deeply disturbed by. Personally, I’m thankful everyday that my instincts and sensibilities served me correctly (and immediately) in realizing Autism Speaks for what it really is:  A money-hungry, fear-mongering goliath that preys on Autistic people and their families.

I hadn’t been back to the AS site in some time, that is until recently when several respected Activists and Allies began calling out Autism Speaks and their horrific ‘Call for Action.’ What I had always believed of AS was confirmed in their latest ‘advocacy’ debacle, which you can read about here.

 

Thank You Autism Speaks  (kidding, right??)

No, I’m not kidding. I have one thing to thank Autism Speaks for, and that is this: When I visited the AS website that day all those years ago, I left an empowered person. I realized on that day, I wasted 20 minutes of my life reading of an organization’s ignorance and fear projected on a people because of their neurology. I wasted 20 minutes of my life reading of their hate of a people because they deviated from the ‘societal norm’ and because they had disabilities.

I wasted 20 minutes (MAX) learning what autism wasn’t.

I look back on that day and realize it was one of the strongest motivating factors in my journey towards advocacy and activism. You can’t ask for a better motivator from others than their ignorance and unwillingness to listen to the one group of people they are suppose to be working with.

NONE of that was autism.

Autism Speaks does NOT speak for me, my children or my friends.

THIS is Autism

If you want to learn about autism, ask Autistic people. If you want to learn about autism (and Disability Rights) from organizations truly advocating for, and working to ensure the rights of Autistic people, then here are a few sites I highly recommend:

  • ASAN (Autistic Self-Advocacy Network)
  • AWN (Autism Women’s Network)
  • Ollibean

And THIS is Autism

It’s impossible for me to put into one post what autism really is to me, and to my family and friends. I am an Autistic person. I have Autistic children. I have Autistic friends. Everything we experience: feelings, emotions, social interaction, relationships, work, school, our environments, etc… is experienced autistic-ly, the way we’ve experienced everything since birth. So, what is autism really?

For us it’s everyday life.

But I thought that was a bit vague. I spent so much time at the beginning of this post telling you what autism wasn’t that I thought I should leave you with a little something more. So I decided to summarize it and say that, to me, autism IS:

Parenthood • Sisterhood • Brotherhood • Family • Friends • Partners • Navigators • Love • ALLY • Arguments • Masking • Laughter • Tears • Stimming • Fun • Work • Success • Failure • Happiness • Overstimulation • Assistive Technology • Play • AngerLove of water • Presumption of Competence • Disability • Education • Self-Determination • Sensory Integration • Scripting • Rest • Insomnia • Sleep • Support • Meltdowns • Compassion • Inclusion • Misunderstandings • Accommodations • Acceptance…  All of these things and so much more.

Autism is not what we have, Autistic is what we are. We cannot be cured, and the Autistics I know don’t want to be. We live the list above to varying degrees. It’s not a list solely of the good things, and it’s not a list of all the difficulties. It’s a list comprised of a little of each - it’s about everyday life, good and bad. It’s probably easiest to say that for me, autism is both an everyday AND extraordinary part of…

L I F E

 

 

Autistic History Month 2013: ACCEPTANCE

04 Nov
November 4, 2013

This piece is in honor of our very first Autistic History Month 2013!

 

Advocacy

I began advocating for disability rights a little over a year ago, and for autism acceptance since my kids were born. I didn’t know I was advocating at the time. I was a Mom doing whatever necessary to make sure her kids got what they needed. I was a Mom being a Mom. I was later informed that I was…

A Mom being a Mom being an Advocate.

So, in all this autism advocating I’ve been doing, I must share that I have never once advocated for autism awareness! *gasp*

(I know, right?!!)

What kind of person am I that I wasn’t advocating for awareness? Well, I’m logical, sensible and

Autistic

When I realized what was going on around me (e.g. my kids and I were Autistic), I jumped immediately into the deep end of the ocean: Acceptance. Why wouldn’t I, right? I had always accepted my kids and myself, so why would a diagnosis change that? The fact is, it didn’t. We were Autistic before we knew we were Autistic and would continue to be so after we learned we were Autistic.

Autism Awarebox checked.

So I was completely confused when I learned that there was this big push to make people aware of autism. I suppose since I was aware, my autistic brain was under the impression everyone else was, too (she tends to think everyone is on her page at all times). My brain aside, I had been hearing about autism awareness for years, well before I had kids. So, if I (a person who does not keep up with current events or even watch the news) knew about these campaigns, couldn’t we comfortably say that we were aware? Instead of pondering the question, I went ahead and used the logical approach:

Skip the awareness and dive head-first into Acceptance! Why, you ask? Because of this:

Awareness – knowing that something exists

Acceptance – the act of accepting something or someone

I feel confident in saying that we are all well aware that autism exists. If you have, however, stumbled upon my blog by accident, check the blogroll to your right. Read through all of them. Once finished, you will most definitely be autism aware. Then you can join me, my family, my Autistic friends and our Allies in

Acceptance.

The Journey

How do you begin the journey to Acceptance? First I ask you to consider your current perceptions of autism. Are they negative? Do you consider autism an illness or a disease?

It’s not.

Do you see Autistic people as victims? Incomplete or broken and in need of ‘fixing’ or, do I dare even whisper… (a cure)?

Because we’re not.

If you do feel this way I ask you to (re)consider who you are receiving this information from. Anyone who speaks of us in this manner is a promoter of the medical model* of disability. It tells you about warning signs, symptoms and red flags. It tells you to be aware, to Beware. And this model is damaging to us because it describes us as damaged.

And we are not.

If you want a different journey, a positive one, I’ll take you – Gladly.  Ours will be about seeing autism as a differing neurology, one that experiences feelings, emotions, human interactions and the environment very differently than the Neurotypical (NT). It will be about seeing an Autistic person as someone who is capable when accommodated, supported and included. It’s the social model* of disability and it recognizes us as valuable human beings.

And we are.

*I talked about the medical and social models of disability here 

How Do You Know?

Who do you listen to? There are so many professionals, experts, organizations, institutions, activists, advocates, etc… out there. How do you choose? Who is right and who is wrong? I cannot tell you how to think or what to do. That’s up to you.  But I can give you some information that might help you make a decision, I know it helped me greatly:

  • If one follows organizations that search for a cure
  • If one raises money to support organizations that search for a cure
  • If one walks, skips, runs and donates time/money to organizations that search for a cure
  • Then one does not accept Autistic people

Elimination of a people because of a disability is not acceptance, it’s Extinction.

  • If one puts us in therapies to eliminate our autistic characteristics/make us ‘pass’ for neurotypical
  • If one makes us hide our Stims (which are so very important and beneficial to our well-being) because they are frowned upon by NTs and considered inappropriate or embarrassing
  • If one forces us to make eye contact because it is more comfortable for everyone else
  • If one re-directs us from, or tries to eliminate our special interests because one feels they are obsessive, pointless wastes of time
  • Then one does not accept Autistic people

Forcing change that does not benefit us, but that is designed to make society more comfortable around us is not acceptance, it’s Reprogramming.

Consider this:

Neither my children, nor I, experience difficulties being Autistic. However, time and again, we encounter people and environments unwilling to support, accommodate or include us, thereby causing great difficulty because

We Are Not Accepted

If you want information about autism (as a ‘disorder’) consult a professional. If you want to learn about an Autistic Life from the experts…

Ask an Autistic

Mission Acceptance

Accepting autism is a concept of entirety. It’s not about picking and choosing. I’ve heard people say they love their child but hate their child’s autism. I hate hearing that, it makes me sad. Autism isn’t something we have. We are Autistic. I would hate to think that my Mom looks at me and thinks:

“God, I would love Renée completely if it weren’t for that darned autism.”

Autism is not separate from me. It is not separate from my children. And it’s not a medical condition that can be cured. Autism is a differing neurology from what is considered ‘typical’ or neurotypical. We are born this way.  It is a part of us like gender and skin color.

So, if you weren’t aware of autism before you got here, between my posts and my blogroll, you are now officially autism aware. YaY!! Have you got it? Good! Now…

A C C E P T   I T !

you know you want to ;)

Stim.sTim.stIm.stiM.stiM.stIm.sTim.Stim.

17 Oct
October 17, 2013

Numbers (and counting) have always played a big part in my life and my daily routines. I count everything. As a kid it was obsessive at times. I counted windows in houses, stairs I climbed, lines in sidewalks, knobs on kitchen cabinets, dashes on the road, chairs in a restaurant, etc… When I wasn’t actively participating in something, I was counting. I would count and re-count things even when I already knew how many I had: Matchbox car collection; Star Wars figure collection; Breyer horse collection, and so on. And for the record…

I still count, not as obsessively, but I do it.

And with pleasure!

 

Is it Bad?!!

You guys know how I feel about rules and breaking them:

Not gonna’ happen!

However, it was brought to my attention that my childhood counting obsession was a form of stimming because I did it every day for hours a day (alongside spinning, pacing and reading backwards).

[for those of you who do not follow my blog, I was diagnosed in adulthood and through my new-found Autistic friends, I have learned/continue to learn so much about myself]

I learned quickly that stimming is considered an autistic trait and generally frowned upon by NT society. So, I perused the internet for a bit, Googling the word so I could get a well-rounded idea of what non-autistic people considered stimming. And here’s what I came up with in the simplest of terms and in my own words:

Stimming is/are mannerisms, sometimes obsessive, that are attributed to autistic people (even though we’re not the only ones that do it!) that make us look…  AUTISTIC. And to that I say…

L o v e   ME   —>  L o v e  m y  STIM(s)

 

Stimming and What it Means to Me 

From the outside, I think stimming can look like a bad habit easily broken. Just stop it, right?! Easier said than done. I’d like to share with you why I stim (counting, plugging into my iPod for hours of music, saying a word/phrase over and over, rocking, fingernail biting, etc…). I partake in stimming because it makes me feel good and, now that I’m older, my stimming is either publicly acceptable (music), or undetectable (counting).

So why do I do these things? What’s the point? I mean, if some of it is socially unacceptable to NTs and draws negative attention to me, why do it?

It’s what it does for me.

It’s not counting for the sake of counting, it’s that when I count everything (everyone) disappears. You see, while I enjoy stimming to stim, it also helps me during very stressful situations. And being autistic, stressful situations run the gamut. The funny thing is, when I describe these anxiety-inducing situations, NTs look at me kind of funny. You see, it’s not the big things, I handle those with ease, it’s the little things. The things NTs tend to call ‘everyday life’ I call

confusing.aggravating.overwhelming.frustrating.exhausting.

My son doesn’t flap his hands because he wants kids to make fun of him. My daughter doesn’t bite everything she comes in contact with because she wants people to stare. And I don’t bite my fingernails for a fashion statement. Believe me, attention from strangers is the last thing we are looking for! We do these things because what goes on around us is too much:

  • the sounds
  • the smells
  • the touches
  • the weather (gray skies/rain… ugh; wind… hate it!!)
  • the people (their greetings and how they speak to us)
  • the unfamiliar places
  • changes in routines
  • expectations
  • and the list goes on and on…

Hand-flapping, biting, chewing, counting – these are the things we employ to release energy (show joy, relieve anxiety) and to calm ourselves. Let me divulge something to you:

We know stimming is frowned upon – because people are always trying to stop us - but when we compare our stim of choice to mustering daily irritations without it, we have to weigh the pros and cons of each.

Stimming generally wins.

(because it’s comforting)

 

To Stim or Not to Stim 

I don’t have a problem with stimming, matter of fact I love it! And knowing how helpful and necessary stimming is in my (our) life, I do it whenever/wherever I feel the need. I understand that in an instance where stimming involves others and without their permission [e.g. my son likes to continually play with the veins in my neck and press his lips over them again and again - he'd do it to other people (and has...oops)], it is necessary to address the stim. Re-direction and positive attitudes work wonders! And re-direction is not another way of saying punishment.

Definitely not.

Re-direction in this case means find a different stim that’s just as pleasing, but doesn’t involve strangers!

While re-direction may be necessary (it’s ok and kinda’ cute when a 3 year old obsesses over someone’s neck, not so much when it’s a 10 year old), so is stimming! But, I can’t agree with the “Just Stop It” approach. When you tell us “No” or “Stop it” and forbid the behavior, then we need to do it ten-fold, we just gotta’

I know, I speak from experience!

When I was a kid and my Mom tried to stop my stimming, that behavior became an obsession. I found myself having to do it, not because it felt good, but because I thought it would be ‘taken away’ from me. That I would no longer have my magical outlet! Then panic would ensue and I would find myself doing that particular stim whenever and wherever.

 

Here’s Where I Stand on Stimming 

If the behavior is not harmful to my child or anyone else, then go for it! I have found with my kids that some stims (if they involve unsuspecting by-standers)  can be re-directed to more acceptable stims, and as we get older  – some of us end up self-monitoring ourselves anyway!

Stimming is not wrong and it is not something we should be made to feel ashamed of! It’s a part of autism. Does it make us look autistic? Yes. But we are autistic, so it makes sense. I will leave you with this thought, though:

When we can say we are a society that’s not merely aware of autism, but a society that’s actually in acceptance of autism, then stimming will merely be a characteristic of a person

not a symptom of a disorder.’