Boycott Autism Speaks

I support the boycott of Autism Speaks.  You can sign the petition here and read the letter to corporate sponsors put together by The Autistic Self Advocacy  Network and other disability rights organizations here.


Autism Speaks hurts Autistic people.  It hurts families and children.  It hurts communities.

I am an Autistic adult but also the parent of an Autistic child.   I know the realities of autism.  What I don't know are things like "grief" and "sorrow" and "despair".  I have never felt that way about myself or about my amazing Autistic child.

When my child was diagnosed, I was told to go to the Autism Speaks website.  I was HORRIFIED by what I read.  My wonderful, beautiful child was a burden.  He was going to ruin my marriage.  He was going to make me grieve for the "normal" child that I was supposed to have.   I watched videos of children in crisis, at their most vulnerable, put on full display for the public.  Humiliated by their parents and Autism Speaks to raise money.  I saw a mother saying she thought about killing her child in front of that child as if she was not even there.   I saw nothing of Autistic adults, as if we didn't exist either.   I was devastated, but not by autism.  I was devastated by the lies that Autism Speaks was telling the world about my son.  About me.

People have said to me "Oh, I'm so sorry!" upon learning that my child is Autistic.  I am seen as an anomaly for loving and accepting my child exactly as he is.   I don't want to fix him, or make him "indistinguishable from his peers", or to be pitied for the privilege of raising him.   All that many people  know of autism is the hate, the fear, the despair that is peddled by Autism Speaks.  What they know is a lie because our lives are full, wonderful and valuable.   We are Autistic and we are not broken.  Autism Speaks wants the world to see us as damaged.  Every day, we fight for acceptance.  Every day, Autism Speaks makes our fight harder.

Autism Speaks claims to speak for us, without us.  They claim to speak for our Autistic children while painting them as monsters.  I can not stand idly by while this happens.  I will boycott Autism Speaks until they make genuine, meaningful change that includes our voices, our reality, and an immediate stop to their campaign of hate against Autistic people.  I do this for myself, for my son and for my community.

This is Autism

Despair.  Fear.  Broken.  Lost.  Helpless.  Burden.  

According to Suzanne Wright and Autism Speaks, this is my life.  I'm Autistic and the parent of an Autistic child, so I assume that my life is supposed to be twice as terrible as this because we have twice the autism.

Except, it's not.

I feel like my life is pretty amazing.  I feel boundless love for my child, my family, my friends and the life that I have created for myself.

I have never viewed my Autistic child as any of those terrible things.  I could never feel despair, or broken, or burdened when I think of him.  Not once.  Not ever.  I've never been more sure of anything in my life.

I see a sweet, wonderful, talented, unique, smart, funny, amazing human being that I am genuinely more in love with every single day.

Then, I thought to myself, maybe that's because I am all of those terrible things that Suzanne Wright says?  Maybe I am too deep in this whole autism thing to see how much our lives are supposed to suck?   I guess that could always be a possibility.  I decided to get some other opinions.

I asked my son what words he felt described his Autistic self:

                           creative, funny, smart, sensitive, handsome, pretty cool

I also asked him how he felt about having an Autistic mother.   He typed on his tablet to me:

                                                "I think it's very nice."  


See, another person who doesn't hate his Autistic life!  Or the Autistic family members who are supposed to be a huge burden.    Of course, he is  pretty deep in this whole autism thing too, so maybe we needed to get an outside opinion.


My allistic husband gets pretty upset when I apologize for filling his life with despair and being a terrible burden to him.  (He seems to not think those things are true.  Weird.)  So, I decided to forgo the apologies and ask him directly what it was like having an Autistic wife and parenting an Autistic child. Remember now, he has to deal with twice the amount of fear and hopelessness that Suzanne Wright does, so I prepared myself to hear some things that might be painfully honest.

                  "My life is like a giant plate of cool beans with a side of awesomesauce!" 

He's got a way with words.

I was still determined to find out from allistic friends and family members if these terrible things could possibly be true.  I mean, Autism Speaks is the nation's largest autism non-profit.  In spite of donating less than 5% of their profits to actually help support Autistic people and their families and having absolutely NO representation from the community they purport to serve, they MUST know best, right?  They're HUGE and they have the most money!  That counts for something, I guess.  

This is Autism:

The grandmother of an Autistic child said her grandchild was:

                                 "creative, smart, gorgeous"


Another grandmother of an Autistic grandchild said her grandson was:

                                 "a joy and a blessing"


The aunt of an Autistic child said her niece was:

                                  "the coolest kid I ever met!"


The friend of an Autistic adult (full disclaimer, she's my friend, she's talking about me!) said her friend is:

                                   "f#@!ing awesome"


Another friend says of her Autistic friends:

                        "I get to see the world from a whole different perspective"    


An aunt says that her Autistic nephew is:

                                "creative, inventive, full of ideas and compassionate"


The mother of an Autistic child said:

              "She is the best thing that ever happened to me.  I love and accept her 

               completely."             


The father of an Autistic child said:
     
                                  "My son is Autistically amazing!"


I started to notice a trend.  Not one individual that I spoke with had anything negative or disparaging to say about the Autistic people that they love.  It's almost as if they realize that life is difficult and complicated, disability can be hard, but that our Autistic lives still have value and beauty.  It's almost as if they accept us unconditionally as if we were also human beings with thoughts, feelings and worth.     Perhaps they believe that with our challenges also come many wonderful gifts and abilities?  Maybe they understand that we all  have a place in this wonderful, diverse world?


So, back to these words.

                                 Despair.  Fear.  Broken.  Lost.  Helpless.  Burden.     

These are the words that Autism Speaks says I am.  My son is.  My Autistic friends are.  This is what we do to those around us.  This is what they see when they look at us?  I'm sorry Autism Speaks and Suzanne Wright, but that is not the reality that we live with.




                          Love.  Compassion.  Acceptance.  Creative.  Inventive.  Awesome. 
                       Cool.  Joy.  Blessing. Smart.  Handsome.  Unique. Funny. Amazing.  
                             A Giant Plate of Cool Beans with a Side of Awesomesauce.


This is what I can understand and relate to in my own life.   Maybe I'm ridiculously blessed with extraordinary friends and family.  Maybe Suzanne Wright and Autism Speaks are WRONG.   (Actually, I think it's both!)


When I asked my son what "This is Autism" meant to him, he thought about it for a while.  He told me that it meant many things, including things that are really easy for him because of his Autistic brain and the things that are really hard for him.  

                                  "But the most important thing is autism is love." 


Autism Speaks, my Autistic son is speaking, I think it's time for you to listen.

Seclusion as punishment

When I was in second grade, my teacher left me in the basement, under the stairs because I was "disruptive".   She told me to "Be quiet and wait." Except she forgot about me all day, so I sat there under the stairs, crying and traumatized and wondering if I'd ever be able to leave.  Because I was 7 years old, I did not understand that I would be able to eventually leave.  And because I have always taken everything that people say literally, and she told me I could not leave until she came to get me, I was sure that I would never see my parents or sisters again.

Because five hours to a 7 year old child who is afraid and is a literal thinker is more like a lifetime.   I sat there crying, and hitting my head against the wall.

I was "disruptive", meaning I cried in class because I didn't understand instructions, because the lights hurt my eyes, because everyone was too loud, because she grabbed my wrist when I wouldn't spell something out loud in class (selective mutism), because my anxiety level in school was always at a ten.   When she finally remembered me, I was yelled at for not saying anything to anyone the entire day about being left under the stairs.   Even though she told me to be quiet.  Literal thinking, remember?

It was torture.

The "behaviors" that caused me to be secluded under the stairs were crying and noncompliance.  I was crying because I was afraid.  I was noncompliant because I was afraid.

 Let me say that again:

  I was afraid. 

 Terrified.

I was punished for being afraid by putting me in a situation that made me even more afraid.

Do you see how that works?

It doesn't.

Because you can't punish "behaviors".  Especially when you don't understand the root cause of the behavior.  Part of presuming competence from your child is knowing that they are doing the best they can.  They are children.  It's the adult's job to give them the tools to succeed that they may be lacking.   I was doing the best that I knew how to do in an extremely hostile sensory and social environment.  No adult took the time to ask me WHY I was crying (I did not understand instructions).  WHY I never spoke (I was intimidated and afraid of other children).  WHY I threw up every day (headaches from the bright lights), or WHY I hit my head or had other SIB's (extreme social anxiety/sensory overload).  No one ever asked me why or even attempted to figure out why I had behaviors.  They just needed to fix them.

What a difference some understanding would have made.

Behavior is communication.  I say this all the time to anyone who will listen.

Behavior.  Is.  Communication.

I will continue to say it until I am out of breath, if it helps just one less child from being punished and traumatized for being scared and confused.  For having a brain that is wired differently from the majority.  

Self Advocacy

I recently spoke with a mom who asked me how to teach her child self advocacy skills.  Here is what I told her:

1.  Allow your child to say "no".  For some reason, we get uptight when children say "no" to us, but they should be allowed to say it too.   Their feelings are just as valid as ours, even if we don't understand why they are feeling that way.   Remember that one person's "oppositional" is another person's "self advocate".

2.  Don't just allow "no", but respect "no".  ESPECIALLY over trivial things.

3. Watch for signs that your child is overwhelmed and encourage them to take a break.  I give my child a "I need a break" card (for times that just saying it is too hard)  and he can turn it in whenever he wants, no matter how many times he needs to use it.  In this way, he will learn that he CAN take a break when he needs to, and his anxiety is lessened.  This is important to use at school too.  Your child's teacher should be on board because teaching self advocacy skills is probably one of the most important things to help your child be successful at school.

4.  PRESUME COMPETENCE . This is huge.  Presume that your child wants to do well.  I promise they do because all children want to do well, but not all children know how (and it's not their job to just "figure it out", it's your job to help them by trying to understand them).  Instead of saying "That child is out of control!", remember "that child is struggling."  I think one of the biggest parts of presuming competence is to remember that behavior is always communication.  ALWAYS.

5.  Be wary of therapies that promise your child will be "indistinguishable from his peers" or that rely too heavily on compliance training.  Your child can not love themselves when they are constantly being trained to be someone else.  Eye contact can be faked (I look at people's noses), stimming should not be discouraged, as it has a valid purpose.  All kinds of communication should be respected and accepted.  If the therapies you are using are not building your child up, then they are going to tear him down.

6.  Remember that your child is not your project.  You can waste their entire childhood trying to fix something that isn't broken, or you can build an amazing relationship based on love, respect and acceptance with the beautiful child that you have.

Selective Mutism

Someone recently asked me about selective mutism, so I thought I'd answer here. First of all, it's not really "selective" as that seems to imply that I chose not to speak. It was more like I couldn't speak in certain places that exacerbated my social anxiety . For a large part of my childhood and adolescence , I did not speak in school, or pretty much anywhere outside of my parent's house and with a few people who I knew well enough. School was an extremely difficult environment for me. It was a sensory nightmare and I often got headaches from the lights and would become physically ill because I was constantly on edge. Most other parents thought I was a brat and didn't like their kids to play with me. Many of my teachers threw around the "R" word, or just called me lazy, spoiled and selfish. I was actually assigned to do a report on why being shy was actually very selfish by one of my teachers. Except I wasn't just "shy", I was autistic, but undiagnosed for many years. Because back then, most people only knew autism from movies like "Rain Man" *insert eyeroll* (quick side note, the man who that movie is based on, Kim Peek, was not actually autistic. He had FG Syndrome). Anyway, as I matured, I was able to find ways to adapt so that my anxiety was not so overwhelming. By the time I graduated from high school, I had managed to make some friends and channel my anxiety into other areas so that I wasn't constantly melting down. For the most part, I can talk now in most social situations, though sometimes, I still find myself shutting down. A lot of it has to do more now with fearing that I will say the wrong thing, or that I will have an inappropriate response to what other people are saying. I've always been "quiet". I will probably never be a social butterfly. I think that at 37, it's safe to operate under that assumption. The absolute worst thing you can do when I'm being quiet is to make a big deal about how I'm being quiet. If I'm not having a good time, I can let you know. I will probably just leave. I don't feel like it's necessary for me to talk all the time. It's fine for other people, but I prefer to observe mostly. I do have stuff to say, and I will say it when I am ready, but please don't act like I'm just being an asshole. I'm not. I'm doing the best I can. For those of you who do know me well, you know that I do talk, and I talk a lot sometimes. That's because you are the people I can be myself around and I don't feel anxious or judged around you. Thanks for that! So, that's what I want to say about selective mutism.

Relaxation game.

Okay, one of my biggest challenges in life is my rigid thinking and inability to be "naturally flexible" in regards to my immediate reaction to stress.  I  react, and then think, which has not always worked out well for me.  My child is very much the same and has spent a large portion of his school career learning "flexible thinking".  This is mostly a good thing, I think.  "Mostly", because I think it's a good skill to have, obviously.  I just am not sure that it's always taught with respect for his neurology and is often taught at the expense of what I am trying to teach him in regards to self advocacy.

One of his therapists suggested a game that I thought was pretty awesome.  It's a regular old ball and she wrote different phrases like "Find a happy place" or "Take a deep breath" to help him practice relaxation techniques.  We toss the ball back and forth and wherever his right thumb lands is the "relaxation" that he needs to practice.  

I wanted to do this game at home with him, but I changed it up a bit to include some important self advocacy skills.  Like, "Say or sign "NO!" and "Think of a way to ask for a break!".   So, we did it and he LOVES it.  My personal favorite is "LOUD HANDS!" because he sure loves his loud hands!   I think that you could customize this ball to your individual child's needs, and even use PECS cards or pictures.  I used words because my child happens to be hyperlexic and words and reading are big motivators for him.  Anyway, I wanted to share some pictures, and yes, the "WILD card" is the Ice King from "Adventure Time" because our house is totally inappropriate.  

I am very honored to be a part of Paula C Durbin-Westby's series of interviews with autistics for Autism Acceptance Month!  Check it out here!

Acceptance.

My friend Amy posted this picture on my Facebook page the other day.  She said it reminded her of this blog and the message I am trying to get out about acceptance.  I really like it a lot, and I agree with her!
I often feel like the doctor when I'm talking to other parents about autism.  Especially when I hear people saying things like "With this therapy/diet/cure, my child is in regular classes! He never stims!  People say they can't even tell that he's on the spectrum!"
First, it makes me sad for their child.  Because the implied message is "My child now appears normal! Isn't that great?"   If their child is happy and able to do this with his or her self esteem intact, great.  I just wonder how hard that child is working to keep up appearances.  I wonder if they ever get the message of acceptance and unconditional love.  I'm not saying these parents don't love their children, in fact, I'm sure that they do.  It's just very hard to get the message that you are amazing just as you are, when you are rewarded for acting like something that you are not.
Secondly, people who push certain therapies or various "cures" and diets because of the spectacular normalizing results they've had tend to forget that autism is our neurology.  It is how we experience life on this planet.  Autistic people are constantly growing, adapting, changing and learning just like every other human.  At their own pace, in their own way.  In addition, most of the evidence that diets, "cures", and therapies even work (and by work, I mean to eliminate autistic symptoms) are anecdotal and situational.  I'm not saying that some  therapies  aren't great at helping people with their challenges and to adapt to what can often be a pretty hostile world to autistics.  I'm just saying 8 hours a day of ABA when you are four years old leaves very little time left to just be a kid.   Learning with your child from a place of respect for his humanity and dignity, that's great.  Forced compliance in attempts to eliminate autism....not so much.  The therapy should be about helping your child with challenges, not changing them into someone they are not.  Unfortunately, the latter is what many parents want.
I think it is hard for many people to understand just how hard it is to grow up being told that the way you are is fundamentally wrong.  How can you grow up loving and accepting yourself when you are constantly taught forced compliance?  When instead of any efforts being made to understand you and the unique ways in which you communicate, you are trained to "act normal"?  The answer is: you can't.    I realize this goes into deeper societal problems, like our inability to see children in general as individuals deserving of respect and compassion.  That, along with how we infantilize those with disabilities, especially those with developmental and intellectual disabilities.
The first step in eliminating much of that is simply acceptance.  It starts by just learning to appreciate each human for who they are and how they communicate, which doesn't seem like that controversial an idea to me.

It's a start....

I've wanted to write a blog for a while now, but as with most things in my life, I don't follow through.  I always have the best ideas, but I'm not so great at the actual doing of the things.  This is my attempt at actually following through with something and I'm going to try very hard (with time and ability considered) to keep up with this.
This past summer, I was told that like my son, I am on the autism spectrum.  This was not surprising or unexpected.  Since my son was diagnosed (and actually even before, since I knew years before he got his "official" diagnosis that he was on the spectrum), I have suspected that this was the case.  Having it confirmed by a professional was a nice touch though.
Growing up, I was just considered extremely shy or a "huge pain in the ass".  I had selective mutism and actually did not talk at school or to many people outside of my family until I was well into high school.  I actually had a guy I went to school with from kindergarten through my senior year of high school find me on Facebook and ask me if he could call me just to hear what I sounded like.  I didn't take him up on the offer because of my massive phone anxiety, but thought it was pretty funny that my weirdness left such an impression on someone else.  I was also a troubling student as I was extremely "non compliant", I self injured, and cried all the time.  Over the years, many of my teachers would try to help me, but not really understand how.  They thought I was just extremely shy, spoiled and narcissistic, when in reality I really just didn't understand social rules and cues.  I didn't think of what other people thought of me at all.  (though years of being told what they DID think, that I was weird and creepy, have now left me with the opposite problem.  I worry way too much about how other people see me.  I'm working on it.) I was just terrified and confused by  every social interaction.   In high school, I was diagnosed with a severe anxiety disorder.  In college, PTSD.  I self medicated.  A lot.  I finally stopped.  I met a guy who liked weird, creepy types.  We got married.  We procreated.  Our son was diagnosed as autistic.  I made mistakes.  I learned.  I became passionate about neurodiversity and autism acceptance.  And, here we are.
Of course, I've left a lot of things out, but that's the basic story.  Along the way, I learned that I sometimes could make people laugh intentionally.  Like, not just at me.  So, I sometimes try to be funny.  Usually it works, but sometimes, it doesn't.  I am always passionate about my beliefs, but I try to be open minded as well.  I try.  Sometimes I succeed, and a lot of times I fail.
Oh, and about the title of my blog, it's from the Devo song "Through With Being Cool".   Which is basically about militant nerds.  Naturally, I could relate.