Friday, January 2, 2009



This week, I visited two local pet shops. At the first one, I talked with two Blue and Gold Macaws. They were molting, and not in the best of moods. Their cages were marked: These birds will bite. The owner explained that they wouldn’t have much to say. That’s okay, I told her. They don’t have to talk in order to be loved. These were rescue birds, taken in by the shop owner after being mistreated or rejected by previous people. Yes, she said. They know that now.

At the second store, parrots were free to roam around large habitats, interacting with visitors. One tried to work the zipper on my jacket; another worked at removing an earring. There was a big Macaw in the back. He kept to himself for awhile, declining invitations to chat or play. He argued with a cockatoo about who would get to use the swing. After winning, he happily vocalized, Hello, Hello, Hi There, Hello. Swinging away. Enjoying the ride.


From The Joy of Autism blog: “Finding joy doesn’t come without struggle.” Estee gets a lot of flak from “autism advocates” for the way she supports autistic people. Sometimes I wonder if the critics read much beyond the blog’s title. In addition to joy, Estee writes about pain, challenges, anger, disappointment and hope, inspiration and grief. Her core message is one of respect for all people. But even if she did only write about things that made her happy, or if I only wrote about parrots and squares, so what? Celebrating life is not wrong. When situations are difficult, it becomes ever more necessary to find the parts worthy of celebration. It shouldn’t need to be said that finding joy in autism doesn’t mean that is all one finds. Besides, the internet could hold a few hundred blogs about joy and autism without making a dent in the negative things that get said.


My father used to say that there are two kinds of animals: the ones in cages and the ones not in cages. He repeated this “joke” a lot. I rolled my eyes every time. I thought he was being facile. I missed the point, maybe. He was teaching me about the concept of false dichotomy, and how just about anything can be set as the bar separating one “type” from another. Today, I am able to see a deeper truth embedded within the silliness. In a way, Dad was right. The cage itself makes the animal less what it is, puts the individual on display to represent its entire species, keeps the people on the other side safe, looking in, imagining that what they see is the truth about that specimen, that species. Two realities: what is and what is seen from the outside.


According to some “autism advocates,” there are two kinds of autistics. The distinction varies, sometimes stated as autism vs. Asperger syndrome, speaking vs. non-speaking, or even, incredibly, miserable vs. joyful. Not only are there two types of autistics, some of these advocates claim, the voices of one “type” necessarily deny or trivialize the needs of the other. The idea that one “reality” trumps another, the idea that “reality” is static, the idea that one organization or entity owns the definition of “autism,” the idea that seeing, even at the surface, is believing, these form the bars to a cage that keeps those on the outside wondering. Which is the “real” autistic? Of course the question is silly, born of the false belief that the autistic person one sees in the nearest classroom or family (or mirror?) must be the archetypal Autistic from which others are once, twice or infinitely removed. The fact that my reality is different from someone else’s doesn’t make either of them less valid. There are as many autism realities as autistic people. This really shouldn’t need to be said.


I do a lot of talking about autism. These presentations cover a variety of topics from communication strategies to employment to self-advocacy. Somehow, I always end up having to talk about murder. I don’t like talking about murder. It isn’t fun. It doesn’t make people happy to hear about Katie McCarron, Jacob Grabe, and Tiffany Pinckney. It doesn’t please people to hear about the shock interventions used routinely at the Judge Rotenburg Center. Students locked in isolation rooms. Caged. Children evicted from fast food restaurants and churches and kindergarten classrooms, none of this is enjoyable. I don’t make a lot of friends doing this, but it has to be done. Whatever the topic, these things work their way to the surface, demanding attention, because they are what matter most.

And then I come home and read once again that neurodiversity is some sort of “feel good ideology,” denying the hardships faced by autistic people and their families. I read somewhere else, once again, that autistic adults do not exist, that we are a different animal entirely from the children who are “really” autistic. I want to just shake my head and go on, but I can’t. I can’t get over it. I tend to obsess about things, this is my nature. This is my cage, and also my swing. From the other side, Hello! Hello!


  1. ... that autistic adults do not exist, that we are a different animal entirely from the children who are “really” autistic.

    I take issue with the term "raising children", in general. I am a parent of 8-year-old son (aspie and adorable!), and a 12-year-old daughter (aspie traits, no dx). My husband (with AS) and I expect them to become ADULTS, that is our goal, what we are raising them to be - so we are not raising children, we are raising adults. (And then there will be MORE autistic adults out there - beware!)

    And I'm not sure it's not the reverse - that there are no autistic children, only autistic adults in small bodies! My 8 year old comes out with comments that sound SO OLD. (The other day -"I'm not really a geologist you know, we are just studying it in school right now." - after giving us more detail about a specific stone than I think most adults would know!)

    I always say that there are three kinds of people in this world, those who can count, and those who can not. (I was a math major, can you tell?)

    Glad to see a new post, Bev - I always understand my family a little better when I read your writings!

  2. Oh, Bev, this essay is a keeper...
    If the history and politics of autism are anything, they are stories of false dichotomy and irony.
    What to do about the false dichotomies? You write about (Estee writing about) joy; well, one of the most famous writings about joy (the finale of Beethoven's 9th symphony) has the key: the task at hand is /binden wieder, was die Mode streng geteilt/: to reunite what convention so arbitrarily divides.

  3. *hugs* Thank you for keeping going. Thank you for speaking and writing. Thank you for risking being ignored. Thank you for risking being hated. Thank you for your patience with people who don't understand or won't understand. Thank you for not hating yourself. Thank you for being kind to those parrots. Thank you for just existing and believing you have a right to exist, because in doing that you allow so many people to do the same. And because you are lovely.

  4. What a wonderful post! I know there is value in being able to name and identify things. But sometimes we try so hard to put things into categories that we invalidate who/what they really are. The entire autism spectrum surely can not be split into two groups - no matter what groups those might be. People need to be honored for their individuality - not just pigeonholed for their similarities.

    Keep writing!

  5. This is one for the 'starting squares'. A moving post, one of your best.

    Don't EVER close this blog for ANY reason!

  6. Dear Linda, Phil, Sanabituranima, Em, and ASpieboy,

    Thank you all so much for your kind words. This means a lot to me. Writing has been hard lately, I don't know why. It means a lot to me to hear your responses. These comments have brought me joy today.

  7. Bev,

    This is a very important essay. I second ASpieboy's suggestion of making it a starting square.

  8. Bev,

    Your writing is always helpful and inspirational.

  9. This was a wonderful piece of writing.

    I wish I had more words to express how much it moved me.


  10. Hi, Bev!

    I've started a blog of my own. It's fun.

    A Merry New Year


  11. Just wanting to add to the comments thanking for another good post. I enjoy this blog and learn things from it (which is one reason why I enjoy it).

    I agree, it should not be treated as a bad thing to celebrate or comment on good things in life (or in autism). Recognising good is not the same as saying there isn't any bad. It's not "trivialising difficulties" to say, "hey there's this good thing over here too, can we look at that for awhile?"

    I'm sorry it's been hard for you to write lately. I want to express sympathy about that because sometimes it's hard for me to write (or talk, or otherwise convey thoughts). So, I hope it doesn't get too frustrating for you.

  12. Bev,
    Thanks for writing about this and my blog. Indeed, life is filled for me these days with MEGA challenges. Joy yes, you have to grab it, seize it, celebrate it every time you can.


  13. Brilliant post, Bev. Thanks for not giving up and thank you, always, for sharing your insights and perspectives.

  14. Angelina Jolie has a tattood phrase that I love, and that often pops into my head randomly:

    "A prayer for the wild at heart, kept in cages."

    Yep, it popped in again as I saw the title to this post, and as I read.

    Good thoughts.

  15. thank you for your blog, and especialyy this:

    "if I only wrote about parrots and squares, so what? Celebrating life is not wrong. When situations are difficult, it becomes ever more necessary to find the parts worthy of celebration........The fact that my reality is different from someone else’s doesn’t make either of them less valid. There are as many autism realities as autistic people. This really shouldn’t need to be said."

    just wonderful, and so helpful.
    cheers from Scotland

  16. Bev, I know I'm still way far behind in your blog posts, but I very much appreciate them. I've been referring fellows to your blog as well to see a non-institutionalized, impartial not-for-profit take on autism.

  17. Parrots and rabbits shouldn't be in cages, and certainly kids shouldn't. Giving kids electric shocks and treating them like terrorists by torturing them, this is simply unbelievable in this day and age. Sounds more like the middle ages, burning witches at the stake.

    Not all the kids in judge Rotenburg center are violent, from what I read. Some hurt themselves in a response to sensory issues. That's hardly a reason to shock someone just because he didn't remove his jacket when told, like I saw on a video on the net once.

    Of course every autistic person is different. Most autistic people want to make friends, but find it difficult because of communication difficulties. I don't even want friends, find it depressing and anxiety causing to be around people. Some have horrible sensory issues, and I have rather mild ones. That's an aspiring post.


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