My friend Steve Summers wrote this a few days ago. I asked Steve if I could repost his words here and he gave me his permission.
“Today I feel tired. —
Tired of being ignored.
Tired of being excluded.
Tired of being treated like an outcast.
Tired of being treated like a misfit.
Tired of feeling like others look down on me for being different.
Tired of being expected to try and act ‘normal’ to have a ‘normal’ life. — I am not ‘normal.’ I am Autistic.
Tired of people who think that just trying harder will make Autistic people ‘more normal.’ — Would you tell a blind person to try harder to see? Would you tell a paraplegic to try harder to walk? Would you tell a colorblind person to try harder to see the colors that they can’t see?
Tired of people who don’t understand Autism and who don’t make any effort to learn about Autism so that they can cure their own ignorance.
Tired of people who refuse to accept Autistic people just as they are.
Tired of people who presume incompetence.
Tired of neuro-bigotry.
Tired of the silence of others. Silence is *not* support.
Want to help us? —
Listen to Autistic people.
Make an effort to learn about Autism.
Educate yourself about what we go through each and every day.
Learn about how negative attitudes make us feel.
Practice Autism Acceptance.
Accept that we are different, not less.
Accept that we are different, but *not* defective. Don’t try to make us into a poor copy of your idea of ‘normal.’
Accept that we are okay to be ourselves — just as we are.
Accept that we are humans with feelings just like everyone else.
Accept that Autistic rights are human rights.
Presume our competence.
Don’t avoid us, include us.
Most of us have social anxiety. Please be kind and reassuring to us.
Please reach out to us. We won’t often make the first move after suffering from a lifetime of rejection, exclusion, and being bullied.
Please practice inclusion.
I am Autistic and I want to be valued and accepted for simply being me. ~ Steve Summers”
Steve is my friend. I am so glad I know him. I value our friendship. I enjoy our conversations.
Yesterday I wrote about acceptance, specifically acceptance of one’s Autistic child by a parent. Parents who do not accept their “child’s autism” often feel criticized and bristle at the perceived implication that they do not “love” their child, “correctly”, “in the right way” or “enough”. I know how completely uninterested I was in the idea of acceptance when I was engaged in an all out battle with Emma’s autism, intent on extricating her from its gnarled grasp. (This last sentence was very much in keeping with how I thought of autism at the time.) What I didn’t consider, what I didn’t know to consider, was Steve and every single person who is autistic who feels the way Steve does.
My inability to accept my daughter’s autism impacts her. Just as I cannot extricate the Autistic parts of her, I cannot pluck out the “autism” from how she sees herself. My non-acceptance, as well intended, as well-meaning as it was, was still felt by her as a criticism of her. But I didn’t know that at the time.
I think we, human beings, forget how pervasive and destructive our ideas about others are. If we are in the majority, our influence, the reach of our opinions are even more destructive. We say, oh but I love her, I just hate the way she walks, talks, the sound of her voice, the color of her skin, eyes, hair. I love her, but I hate the way her mind works, how long it takes her to get dressed, the way she eats… No really, I DO love her. And we do. We feel tremendous love. I loved my daughter all those years I was fighting her autism. I did. I absolutely did. I fought her autism BECAUSE I loved her so much. But then I met people like Steve and Julia and E. and Kassiane and Bridget and Savannah and Laura N. and Sam and Amy and Gareeth and I read what it was like to be brought up by parents who didn’t accept their “autism” and how it felt. And I began to understand. I was able to hear what they were saying and I began to see the connection.
Thank you Steve for allowing me to print your words here. Thank you for writing this. Thank you for helping me parent my daughter differently, so that in ten, fifteen, twenty years from now maybe, just maybe, she will not feel quite so tired.
Emma – 2004
Reblogged this on reflections of a writer.
This is beautifully written and thought-provoking. I am an adult adoptee who has a child with sensory issues. Adopted individuals deal with much of the same unacknowledged and silenced issues as those who have autism. We are not allowed to know our own genealogical histories and if we seek to find out we are called disloyal many times. We are not accepted for who we were born as, but we must fill a role and our identities are actually changed “amended” on our birth certificates. As an adult adoptee and a mother to a child who is not wired the same neurologically as others, acceptance and rights are very close to my heart. http://www.PeachNeitherHereNorThere.blogspot.com
Samantha, thank you so much for reaching out and sharing this. I had never before considered how it must feel to have one’s “identity amended” or how that might impact a person. And thank you for your blog link!
Personally, I would never amend a transnational adoptee’s ethnic identity on any document because that just denies the biological reality of their roots. Nor would I change their given name (as the Stauffers did to little ‘Huxley’). I mean, sure, Chaoxiang Fletcher (for example) might ^sound^ ‘weird’, but a child isn’t a pet and can’t get used to a new name so quickly. It could even be distressing for them to have that one constant familiar thing taken away.
I am the mother of an aspie son. I think I, also, am tired! My son is 29 years of age. Schools didn’t recognize autism while he was growing up and I fought for him every day. Advocating is a hard job. I’m so happy people are finally becoming better educated in this area! Reading these blogs is amazing. Keep up the good work! Letting ignorant people get away with non-acceptance means you fall through the cracks. We can never let this happen!
Thank you for commenting Fre! It’s nice to meet you.
I think I do a pretty good job of acceptance…most of the time. But there are circumstances where my mind and heart conspire in insidious ways to block me from my better instincts and my best intentions. Public embarrassment is my achilles heel. I get to practice every time Emma and I go out together. In order for her to have as much fun as she can, I have to abandon my own desire to “look good”, because she is going to act loud and silly and she wants me to act loud and silly with her. I’m certainly a silly guy, but I’m also shy in general. I don’t like being loud, or drawing attention to myself. On the subway, I encourage her to speak more quietly. But when we’re outside or at the museum, we play loud… and mostly proud. I’m getting better. When we go to the exhibits and Emma says loudly, “Look the alligator is biting the frog’s butt!” I say, just as loudly, screening out the stares and eye-rolling, “Yes, Emma, the alligator is biting the frog’s butt! Ouch! I bet that hurts!”
Emma has no inherent shame. How wonderful. I was raised on shame. From my parents. From the nuns and priests. I never knew the meaning of acceptance in my own life, except from my friends and a few kind relatives and teachers. Now I get to practice the gift of unconditional love and acceptance every day. That’s a gift. It hurts sometimes. I feel that old shame and embarrassment. But I get to work with it as an adult who at least knows better, even when I want to hide.
Emma just is. And that is perfection.
Richard, thank you for being such a wonderfully fabulous husband to me and practically perfect Dad to our children. ❤
Practically perfect? Don’t tell me I’ve been bitten by the Mary Poppins bug! Thanks sweety:)
Better than that nasty alligator in the museum and anyway hopefully not in the butt. I can’t see Mary Poppins doing that… 😉
“Emma has no inherent shame.”
Embarrassment seems to be more of an NT emotion. Autistics have to learn how to be embarrassed because it doesn’t seem to come naturally. But I don’t see this as a bad thing at all. Imagine how free you would feel if you had no concept of self-image or living up to others’ expectations.
Being without shame is what many NTs spend years of their lives going to retreats, working with spiritual teachers, not to mention a great deal of money, to achieve!
I think I disagree, I’m autistic and I don’t remember a time in my life I didn’t felt shame and embarassment, when I was a very young child I was already anxious because of it, I am embarrassed most of the time, it’s my contant companion because I’m different and I know others notice that and judge it. Many autistic have social phobia and I can’t see how to have that and feel less embarrassment. I think that’s more of a personality thing.
You guys are making me want to see that alligator.
LOL! Anytime you find yourself in New York City Gareeth, let us know. Em is always happy for an excuse to go to the museum and she’ll introduce you to “snake bite boy” as well!
I loved this!!! I have been working with little autists for the last 4 years, in the field of Applied Behavior Analysis. I see what good ABA can do, but I also see the lack of humanity in it. We are trained to not accept autism, that we can “fix” it, “remove” it, eventually “cure” it. I whole-heartedly disagree with that, so much so that I finally got out of the field, but am still working with little autists in education because I LOVE them!!!
Hi Cloudwalker! Welcome and thank you for commenting! It’s nice to meet you here. 🙂
Very enlighten, thanks for sharing this. I have a 14 years autistic boy and i am glad that i did not wait too long wasted time and money for trying to cure him and even worst make him “normal” . I accepted and love him the way he is but was worried that I did not tried hard enough to make him “normal”, just as some relatives, or friends think. Thank you.
Sometimes it doesn’t matter what you do, people will criticize. Thanks for commenting Otty!
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So strange, I have been thinking along the very same lines this weekend, and using almost identical set of analogies!
I particularly like your list of “want to help us?” suggestions. When faced with bigotry and discrimination it’s particularly hard to autistic people to formulate a decent reply (if any), and this provides some brilliant responses!
I used to meltdown a lot in public, but I’ve learned to control that…now I go mute. I designed an alert card to deal with the extreme situations, (including more immediate advice, and my husband’s phone number) – but for the longer term, your suggestions will go a long way. I’m going to start using them.
Leigh – I just friended you on FB so I can introduce you to Steve!
Hi Leigh! I am happy that Ariane was able to introduce us and happy to be your new FB friend. Thank you so much for your kind words about my list. I seem to have found a lot of Autistic people who feel the same way as I do. I am happy that we can connect on this common ground and then work to educate the public about these things.
Sometimes it is difficult to keep on trying to educate people when so many don’t seem interested in paying attention, but, it is worth it for the sake of all of us. I want the world to learn to become much more understanding and accepting that Autistic people are different, not defective.
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