Sunday, March 30, 2014

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?  


Sunday, March 23, 2014

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 
    • 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
  • 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.