Thursday, December 5, 2013
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.
Thursday, October 3, 2013
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.
I was punished for being afraid by putting me in a situation that made me even more afraid.
Do you see how that works?
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.
Thursday, September 26, 2013
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.
Monday, September 2, 2013
Wednesday, June 19, 2013
Monday, April 22, 2013
Sunday, March 17, 2013
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.
Sunday, March 10, 2013
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.