Why "Awareness" is not enough

Many years ago, I thought that any conversation about autism was a good thing.  I thought that the  more people who knew about autism, the better and easier it would make my life and my son's life.  You see, we are both Autistic and it's not always been an easy road when faced with the ignorance and judgments of other people.  So, seeing people celebrating Autism Awareness in April seemed like a "Really Good Thing".  

I slowly came to an understanding and appreciation of the huge difference between autism "awareness" and autism acceptance.  

Awareness means that the rhetoric surrounding autism is dominated by people who are NOT Autistic.   Parents, professionals, even siblings.  

Acceptance means that  you don't just ask for our input but you recognize that we are going to lead the conversation. 

Awareness means that there is going to be a lot of misinformation.  Because the people creating "awareness" do not have the lived experience of being Autistic.  Often, they don't even consult with us when talking about us.   

Acceptance means  respecting diversity, valuing our humanity and recognizing and appreciating our place in the community and as experts on the Autistic life experience. 

Awareness means "othering".  

Acceptance means authentic, meaningful inclusion.  

Awareness talks about how hard it is to deal with us, as if autism is something that happens to anyone other than the individual.  

Acceptance means that my Autistic life experience is just that.  MY experience.  

Awareness talks about the difficulties and barriers that I face, without acknowledging the role of society in creating those difficulties and barriers in the first place.  

Acceptance means that supports and accommodations are a given because my value as a disabled person is not in question.  

Awareness is shame. 

Acceptance is pride. 

So, when we talk about the difference between awareness and acceptance, it actually is a pretty big deal.  Awareness is not something that helps me.  It doesn't help my child, or my family.  It doesn't help my community to want to include us.  It doesn't help our schools want to stop isolating and segregating our children.  

Awareness makes you feel good for a few minutes because you think you did me a favor by acknowledging my existence.  

So, isn't any acknowledgement or "awareness" educating people about autism??

 I've never met a person in my life who when given the information that I am Autistic says: 

"Autism, what is that??? I've never heard of such a thing!  If only I were aware that it existed before!"  

However, I am CONSTANTLY bombarded with things like: 

Functioning labels

Disbelief because I am not like Rain Man

The latest quackery intended to fix me

Parents comparing their minor children to 30 something me, an adult woman

Sympathy for my allistic husband for "putting up" with his Autistic wife and child

Disbelief that I am unable to do some life skill type things because I can do other life skill type things

People assuming I have "moved past" autism because I am married and can talk

People thinking I'm an asshole for trying to explain these things because it disturbs their privileged viewpoint

Thanks, "Awareness"!  

And it goes on and on and on to the point that some days, I don't even want to interact with other humans.   I don't have that choice.  And I refuse to hide who I am or try to pass for someone I am not.  

There are those who will still say that there is no difference.  This,  in spite of our repeated attempts to tell you that this is just not true.  You will say that "Awareness" is good enough.  

Except, it's not.  

 When you see the difference, how can you still pretend it is?  When you see Autistic people cringing at the very concept, how can you still stand by and tell us that is all we deserve?  

T21 Blog Hop

  

Why we do what we do....

• Sometimes, you do something small and it makes a huge impact.  I had a conversation recently with a parent on Autism Women's Network's Facebook page.  
• This parent was wondering if AWN was a good fit for her.  She felt that autism was a "prison" for her daughter and she said that there was nothing about autism that she could ever value.  Her daughter was very young, and non speaking with intense needs.  She wondered if she should even bother staying around at a place like AWN.  
• Some of the things that she wrote were very hard for me to read, as an Autistic person.  
• I read  her message several times and I noticed three things:

• This mother was frustrated
• This mother clearly loved her daughter and wanted her to be happy
• This mother intentionally sought out Autistic adults to learn from

• Though some of the things I read were quite upsetting to me, I stepped back for a moment and thought about the kind of response and information I would want if I were this mother.  
• This is what I wrote to her:  
• Hi. I wanted to remind you that you are writing to Autistic people, so please understand that we have worked hard to learn to love ourselves in spite of what society tells us about the value of Autistic lives. I'm just saying that it's difficult to read things like this when you are Autistic, so perhaps keep that in mind. 
• When I see parents speaking like you are about autism, it does make me sad because I believe that parents owe it to their children to build them up and love them for the unique people that they are. I can tell that you love your daughter, but maybe you don't know much about ableism or disabled lives? 
• I believe that autism is an integral part of my identity and it can not be removed from me. I realize that you are struggling with understanding because your daughters neurology is so different from yours. I want to say to you that if you want your daughter to learn to love herself for exactly who she is, then you must learn to accept the fact that she is Autistic and that she is exactly who she was meant to be. 
• Disability is a natural part of the human experience. I am not discounting any of the difficulties or hardships she experiences, but I'm just saying that they are not caused by autism. They are caused by a society that views disabled lives with disdain and does not accept differences. 
• I don't think it's okay to fight the person I was meant to be. But I do think it's my job as a parent, as a disabled person, as someone with even a small platform to stand up and fight ableism. It's my job to say that it's our society's intolerance of diversity and disability that is wrong. 
• Autistic people are not wrong. 
• I am not wrong. 
• Your daughter is not wrong. 
• Your daughter is the opposite of wrong. I don't even know her, but I can tell you that her Autistic life is worth living. She obviously has brought love and joy to you. 
• I think if you are willing to listen to Autistic people with an open mind, then this group can be beneficial for you. As long as you follow our community guidelines, then you are welcome here. 
• In addition to that, I'd like to suggest some blogs and information for you. 
• Are you familiar with Amy Sequenzia? She is a frequent contributor to AWN and is a non speaking Autistic adult. Amy is also a poet and activist. She writes for AWN, for Ollibean and you can read through her writing on her blog nonspeakingautisticspeaking.blogspot.com 
• Emmashopebook.com is a great resource too, and has recently been featuring more of the writing of Emma, who is an Autistic girl. 
• I would also suggest the film "Wretches & Jabberers" to you. Only because I had an acquaintance who felt very much like you about her child's diagnosis. We watched the film together and she said that it was a real eye opener for her and it changed the way she thought about autism.
• I hope this helps you and I wish you the best of luck. Please let me know if there is anything else I can help you with. You can message me here or e-mail me at Lei@autismwomensnetwork.org
• Lei
• I was nervous about my reply, because I do actually care a great deal about hurting people's feelings.  I don't want to hurt a parent's feelings.  The feelings of parents are always secondary to the health, security and well being of their children though. 
• I was actually preparing for an angry response.  That is generally the kind of response you get when you challenge someone's views on autism and disability.  
• The response that I did get was surprising and honest and lovely.  
• " I truly appreciate your input. This has given me more food for thought than I have had in a long time. Wow. I am somewhat awestruck right now. I can tell you that in a few paragraphs you have just opened my eyes to a whole different way to see things. I obviously have much to learn..... I would like to stay in this group to read. Thank you for opening up, what I think, is going to be a whole new world of discovery in my relationship and understanding of (my daughter)."

This is really why we do what we do.  Making connections with people, opening minds to new ideas and changing their perceptions.   I've been Autistic my whole life.  This is a completely new experience for this parent.  I'm glad we had this conversation and I'm excited and happy for her daughter.   I'm excited for this mother too, because our relationships with our children are precious and sacred.   I've always believed that unconditional acceptance is the greatest gift you can give to your children.  And it is the least that all of our children deserve.  

Love Not Fear

This is my contribution to the Boycott Autism Speaks #lovenotfear Flashblog.

Sometimes, I am afraid. 

I'm not afraid of autism, never really have been afraid of that.  It would be foolish, since I kind of like myself, my child and my Autistic community.  

Sometimes, I am afraid of how those of you who are on the outside see us.  How you treat us and talk about us.  That is scary.  

When I am afraid, it would be easy to run and hide away.   I just can't do that though.  I can't do that because the love that I have for my child, myself, my community is so powerful and overwhelming that sometimes it just makes me want to burst.  This love swallows up all my fears and pushes me forward every single day of my life.  

I see this love when I look at my child.  The way he jumps and jumps just to be able to take in this world.  His laughter, his quiet moments, his dedication and perseverance.  That is love.  

I see it when I am with other Autistic people.  They get it.  They don't expect me to look them in the eye, or do things in the right time.  Because they know that the right time is however much time I need.  That is love.  

I see this love in ally parents who fight so hard for their children's voices to be heard, humanity to be respected and the never ending battle against ableism to allow them to find their place in this world.  That is love.  

It's a lot easier to accept the lies, and the fear than it is to stand up and fight back against them.  To those parents who stand with us, that is the ultimate act of love.  

To those parents who look at me and don't see a burden or fear, that is love.  Some things are hard for me, but you still see me as your equal.

I know this because that is how you look at your children.  

You see those amazing children of yours as whole, and complete and deserving of all the love, acceptance and respect as any other person on this planet.   You see us like that too.  

When others dismiss us, you KNOW our value.  

That is something that is still seen as revolutionary and exceptional.  Though, it should not be.  You ally parents know that too, because you are loving with every ounce of your being.  You're too busy loving to even acknowledge fear in your vocabulary.  

It is noted and appreciated.  Because we need each other to make this world a better place for Autistic people.  Thank you to those parents who let us lead the way, but always stand beside us.  That is love.   

I'm afraid sometimes, but knowing that I'm not alone makes my love even bigger.  

Between fear and love, I will always choose love. 

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.