Last night I asked Emma, “Do you want me to read Anne of Green Gables or something else?” I was seated at the computer responding to a comment left on yesterday’s post. Em was leaning over my shoulder looking at the computer screen. She pointed and said, “Look! There’s Harvey and Tracy and Pascal!”
“Yeah! I’m just finishing up here, Em. Did you brush your teeth?”
“Uh-huh,” she answered. Her one hand gently rested on my shoulder, her head about an inch from mine, she twirled her string and continued to peer at the screen.
“So Em. Should I read Anne of Green Gables?”
“Nah.”
“Oh!” I said, surprised. Turning toward her, I looked at her, “What do you want me to read then?”
“This,” she said pointing to the screen.
“You want me to read the blog to you?”
“Yes,” she said.
I mentally scanned yesterday’s post, suddenly wondering if I’d written anything I would feel badly to have her read or hear. And as I did so, I marveled that this was something I was having to be concerned about. Several years ago, had someone cautioned me to be careful about what I wrote on this blog and gave the reason for their concern as one day my daughter would express an interest in reading it, I would have laughed and assumed the person did not understand my child. The idea that my daughter would be interested in anything I wrote, let alone anything I wrote on a blog about autism was the LAST thing I was worried about. And yet, last night, there I was, and not for the first time, rereading a post I’d written with a critical eye. This says far more about me and my limitations in imagination, as Anne of Green Gables would say, than about my daughter who continues to surprise, astound and prove us wrong.
That my daughter continually “proves us wrong” is something I am working hard to change, because again, this says far more about me and my limited thinking than it does about her. Why should she need to “prove” anything? So many of the various therapies used for Autistic children spend an inordinate amount of time requiring our children to “prove themselves” to us. Often, having done so, we then change the question or the format, suggesting that this is for their own good as they need to “generalize” the information. We ask again, insist that the answer be given within a certain time frame, insist that it be given with specific wording or in a different format, as though their first answer wasn’t enough to convince us. Who exactly is benefitting from these exercises? We say we are doing this with their best interests in mind. We tell ourselves we are “teaching” and this must be done in order for them to learn, but it seems to me, it is often the other way around. It seems to me these exercises are done to convince the skeptics among us.
We do not treat our Autistic population as equals. We do not presume Autistic people are competent, often we believe they are incompetent and ask that they prove to us their competence again and again. We pity them and often their families too. Organizations set on “helping” those who are Autistic discuss their work initiative programs, their mentoring programs, (almost always it is non Autistic people mentoring those who are Autistic) yet fail to see how their well-meaning programs are biased, do not presume the competence of those they suggest they want to help, do not include Autistic people in the planning and implementation of such programs and express shock when their various programs are met with resistance within the very population they say they are helping.
This is really at the crux of the most astonishing thing I’m learning. It is not that my child is limited. It is that I and others like me have been limited in our thinking about her and those like her. It is this, that I hope I will see change in my lifetime.
“Read the blog,” Emma stated as she crawled into bed last night.
And so I did.
Nic and Em ~April, 2013
Emma's Hope Book 
Yes, your comments here and in the last blog about people unknowingly limiting kids, really resonates. Last month my 17-year-old daughter Madison (with autism) wrote something similar. Her comment was: “Society must realize that lives get wasted when assumptions write off opportunities.” I thought that was poignant, as are many of her writings. But she was one of those kids who otherwise would have been written off. It reminds me a bit of the children’s story, “Frederick.” All of the busy mice scurry around while Frederick seems to sit idly, and the others notice only with resentment. Not until the end of the story do the others realize he has a gift for poetry (they thought he was lazy and worthless and thus mostly left him alone). ALL of our kids have potential and they need exposure to information and opportunity to reach that potential.
Really love this comment Linda and I thank you for leaving it here. I love what Madison wrote! Yes, yes we must realize this!
My daughter has a way of saying things that is unlike anything I’ve ever heard. It is a way of communicating a thought that, to my ears, is poetic and completely unique!
Oh I just love Frederick! It is proudly part of my son’s library. And YES! we do make autistic kids prove themselves, like immigrants need to pass a test to get citizenship, those with autism have to pass an almost infinite number of tests to get their citizenship, and even then if they do get it, it’s often second class at best. Ariane you make a point I have not ever thought about until now. That’s just so you! 🙂
🙂 Thank you Charlotte. I keep thinking of Teddy and his love of Pokemon, his troubles at school and how very misunderstood he was and how he was treated and made to feel it was all somehow his fault. How this is what is done… our children are forced to prove themselves repeatedly and when they refuse we point to them and say, “See. I knew it.”
As “unconventional” as it is, (laughing a bit at the idea of US being unconventional, imagine) anyway, I have enjoyed having Ted home these last few years, during his break period. Having the time to finally get to know him, with all the school stuff behind him. Just getting to know HIM, Ted, talking, letting him say what he wants, without the perpetual stress of school and trying to make it through another year. (Duct tape, we used lots and lots of metaphorical duct tape to keep him together those years) We now have spontaneous, relaxed conversations and he is a fascinating person and a study in contrasts. He says he is a misanthrope, and can you blame him, but I have shared with you his words, his eyes are more open to the inequality and the hypocrisy in which we treat people world wide than just about anybody I know. Maybe it is an increased sensitivity he may have because of all he went through, but I am in awe of him and his empathy and his honesty. These past few years together, the years we should have been doing something entirely different according to society, have been a gift, they have been my celebration, and they have been yet another lesson from Ted, this time has shown me that society gets a lot of stuff wrong and in their insecure quest for conformity society often doesn’t take the time to enjoy the good stuff, the magic. Ted has shown me the magic.
I love this comment so very much! 😀
I read your last blog and then this one thinking I have always assumed my son was competent. We had a lovely nurse when my son was going through the diagnosis process and she told us to always be age appropriate with Andrew and my husband especially made special efforts to do this. I realised last night as I was helping him study for his upcoming state English exam that some times I have limited views of what he can achieve. Firstly when he entered secondary education I never thought he would do the state exams. His resource teacher pushed us to see how far he could go. I was reluctant but my husband (he’s an accountant) really wanted him to have a maths qualification so we said ok. He has had extra help but he is now doing 7 subjects in the state exams next month. Back to studying English. He is really enjoying the novel and needs no help with that but I thought the poetry section would be beyond him (reading is something he has struggled with). Oh how wrong I was. I have been reading the poems to him and then getting him to answer sample questions. He usually doesn’t give the answers I would give but he gives his own clearly thought out answers with reasons to back up what he thinks. Thank you Ariane for helping me realise I have to stop and think every so often. Helping me see my shortcomings definitely makes me a better parent to both my children on the spectrum on off.
Oh Ciara! I don’t always presume competence, I don’t. Or I think I do and then when she does something in a way I don’t expect I question it and I have to tell on myself. Luckily my friends are pretty good at pointing out to me when I’ve veered off the path! This is a process, for sure.
So, I Aced AP English class (and the exam, but yeah) and part of the reason was because I, like your son, often came up with different answers from the rest of the class and sometimes than the teacher has that I could back up.
I was a failboat at math, though, and didn’t read till well into 3rd grade. Neither of which I’m ashamed of. In fact, my learning to read came in the face of special ed teachers presuming I was incapable. At the time english was the only class I was pulled out for special education. Sometime during the year, I learned a bit and decided that the special education class’ books were ridiculous. The stories made no sense and were very illogical. I decided to walk out. The teacher laughed at me, and told me she’d see me in a few days. I didn’t ever go back to her classroom (though I continued to need support with spelling- yay dyslexia and auditory processing disagreeing with how that is taught…) and in fact had reached college level reading in the next 2 years.
I’m glad you are seeing your son blossom!
Savannah – thank you so much for sharing this. I think we parents are given so much information that is so often wrong about what our kids can or can’t do… it’s just so lovely to read of your experience, yet another example of just how wrong so many people are!
As an autistic I know that others measure my success in terms of how neurotypical I can look and behave. I think acting lessons would be far less expensive than therapies and also make more sense when the intended outcome for success has to do with how neurotypical autistics will come to look. I think something is wrong with the measure of success applied to us, but then nobody seems to really care about that. Just think of all the things you do to improve your child with autism – ABA, social skills training, inclusive play groups, mentoring, etc – Please question whether the measure of success makes sense. I haven’t ever seen anyone question this aspect of how we are measured against the NT norm. Does it even make sense? It tells me that I am only going to be accepted in this world if I am good at acting like an NT. Many times I choose to act like an NT because I know this is the only way I will be given opportunities. In fact, the better my acting, the more opportunities I am given. What a treadmill to have to run, but it is so.
Judy, what you’ve described is exactly why I am working so hard to not do these things with Em. I don’t want her to feel she is not accepted for being and acting as she does. This is what I hope society will come around to see, too.
As you know, I am so very proud and honored to know you, not for your ability to “pass” as NT, but because of the way that beautifully artistic mind of yours thinks and expresses itself!
Judy your thoughts are very insightful and I gain a lot by reading them – thank you. I remember my young son telling me about his best friend at Kindy called Lachie and when I got the child/parent contact list in Term 2 I realised there was no boy called Lachie and he was weaving a tale to please me. It devastated me and made me realise that my definition of happiness was lots of friends but it was not his and nor should it have to be. Who defines happiness and who defines success? It should not be the right of the majority.
Wonderful post! I’m new to reading this blog but it truly resonates with me. I have a 13-year-old son with autism and I am learning (and re-learning) every single day to apply the “presume competence” thought model with him. He consistently jumps over my assumptions and continually does more than I dreamed he ever could. Shame on me for assuming the worst, because he does not communicate like others; yet “yay” for me for finally learning to PRESUME COMPETENCE. Thank you so much for sharing about Emma – your example is inspiring me.
Oh Anne, all I can do is nod my head vigorously in agreement!
Just gets better and better, doesn’t it? ❤
*Nods* enthusiastically!
ok, so what is Emma’s verdict on the blog? How does it stack up with Anne of Green Gables? Love watching her “prove” us all wrong.
Ha! It’s hard to say, she fell asleep before I could ask! So either it put her to sleep or she was just too tired to stay awake despite it’s riveting content and writing style! 😉
careful or you may find your blog marketed as a sure fire cure for autistic children’s sleep issues 😉
Oh my gosh, it will be called the blog version of Ambien! Quick, I’ll need to patent this…
I just love you and Em! Go, Emma! Go!
Yay!! *Snoopy dance*
Outstanding as usual:) I have not been quite “in the loop” lately, due to a busy schedule, but I wanted to also comment on the excellent point Judy made. As a professional performer, and an autistic person from a generation when passing was the ONLY option, I know far too well the reprocussions and rewards of passing for NT. I pride myself on my skill, but the price is so very high for the effort. It is so ingrained that I would not know how to otherwise. I have advantages, to be sure, and sometimes feel I have no right to speak out as an autistic person, but I am far from NT either. I am an expert at passing, to the point of overcompensation. This takes much effort I would gladly put into something else, were it possible. So, I also look for a day when there is more acceptance and approval of the many outside the framework of a very exclusive society. My deep issues with shame, and the need to “not rock the boat” makes it hard to speak out, but, I will muster the courage and say I am APPALLED at that children are drugged and given the equivalent to dog training, and bullied and punished if they act out about it. Even now, I feel I must be careful how much I get involved in the conversation, for I am only effective as an entertainer if I can make people happy. I must be liked, and that mean passing, if eccentrically. Not all autistic people are actors, not should they have to be. What they all are, we all are, are people of far greater potential than has been presumed in the past, and an approach of loving acceptance, respect, inclusion, access, support, done with the given notion of presumed competance, is more than essential.
Much love to all of you, and to all the amazing people who are making the world a far better place for so many through their efforts.
Oh Chou Chou… I feel the topic of tomorrow’s post brewing… This is so, so important, the cost… the energy this takes… the toll it takes… yes, yes… 💕 and O____ (spoons)
Oh spoons! If you are familiar with Karla’s ASD Page, she writes about “tokens” (which are essentially spoons). That and “autistic burnout” (total burnout from spending so much energy passing as NT for too long). She’s got some awesome slides on her site about these things. I learned a lot about this from her page.
Thanks, Beth. Yes, I am familiar with Karla, and she is excellent at articulating many things that ring true. I have dug deeply into her writing, and was not familiar with tokens. I also am not familiar with spoons, so I thank you for your explanation:) I am so glad I had a moment to add something of a little worth, as I ready myself for the next performance, which will be both happy connection and total drain. XO!
Beth and Chou Chou ~ I just had to put this link to the “spoon theory”. Love this! http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Thank you, dear Ariane:) I found this very article last night, as I wanted to know more. Yes, that is a brilliant discription, and it is truly important to know how many spoons you have for any given day, or days ahead! 💕
I am damn grateful that more opportunities are opening up, so that I am not forced to “pass” every time I walk outside the door. It really is not worth it, and I have never earned worthwhile friends by doing so.
Mahatma Gandhi once tried dressing as a British gentleman to get in the front of the train, only to find that it did not matter. People could still see his skin color, and so he was still going to be treated like a lesser person. Likewise with autistics, it does not matter how well you can act. There will always be someone who is really good at noticing your subtleties, and they will get suspicious. Plus, you will eventually become so burned out from acting, that you will suddenly want to retreat from humanity, or worse!
And this is why I take the brave path to tell a whole classroom of students that I am autistic, why it is important to cut us some slack if we offend unintentionally, and that our eccentricities are an important part of who we are.
Thank you so much for this post! I have been challenging myself to think of my son without limitations. Stop limiting my speech to only simplest words. Stop reading the books that are below him, but like you said, it seems like a “leap of faith.” He is in kindergarten and I already see the “dumbing down” of the curriculum. I know that he will find his voice and prove them wrong.
Hey – good for you! 😀
Hi Ariane,
I want to say thank you for your posts on presuming competence. This one is just beautiful (and as for the photo – WOW!). Emma sounds like a smart one – she’ll go far for sure. The world needs her, and others like her.
I hope you don’t mind, I have shared your wonderfully eloquent post defining presume competence on a website for students of autism because I want as many people as possible to read it. So if you have a small spike in readers from the UK that might be the reason!
Although I have always had the feeling that I (and everyone else) was seriously underestimating my (autistic, nonverbal) son’s abilities, I only heard of the concept of “Presume Competence” relatively recently. In a short space of time radically changed my behaviour around my son. I speak to him differently. I play with him differently. I think about him – I *see* him – in a whole new way. Would you believe I can already see the difference in his reactions to me too? So perhaps I should also say, thank you on his behalf, until he can do it himself of course. You have made a difference to us already.
Mrs C – I had the same experience… when my daughter was younger I (finally) made the realization that her comprehension was beyond my expectations (and understanding of her) at that time, and I started to interact with her at a higher and expanded level of discussion and explanation. She changed into being more interested and interactive. Of course now it’s easy to see it’s no wonder! But it was helpful to get that immediate assurance of being on the right track…
Yes, Linda! Yes, yes and YES!!!
MrsC – thank you so much. I don’t mind at all, in fact I really appreciate your sharing this post with others.
What you’ve described is EXACTLY our experience too. It has been incredible to witness the transformation that has occurred as a result of presuming competence!
Thank you so much for such a lovely comment!!
You’re welcome! And since you gave me permission, I have posted links all over LinkedIn and on a special needs Yahoo group. This is a message which needs to be heard by as many people as possible. 🙂
Hello Ariane
I am new to your blog as we have just recently started this journey with my daughter, who turns 3 this week. It was an overwhelming and confusing year for sure and I felt as if I was fumbling in the dark (my first blog posts reflect that). But like you, I was proven (already!) by my girl just how competent she is, if I just get out of her way with my “help”. Gradually I have been shifting towards really working with her and not trying to bring her over to my way of doing things (with only best intentions of course). I look forward to following you and reading some of the resources you provided. It’s hard to make sense of all the conflicting information, but I think we are finally on the right path. Feel free to come on by to my blog and meet Soaps when you get a chance!
Sounds like you are all doing great!
Pingback: Madness | Gray skies
I feel like I’ve missed a lot! So much going on….
M’s PPT is tomorrow…I have to make my list of Things we want to stop worrying about – primarily the “passing” issue…the teacher may not like me bringing it up at this moment, but I’m tired of all that distracting his energy away from learning.
The question is, what to do when he needs to be more active than is workable in the classroom? He gets movement breaks (where he can bounce, or do whatever) but that’s in the special ed room. Does anyone have a recommendation for how I might word some of this?
We finished a book that his class had read in school “Blood on the River” – about Jamestown. He really enjoyed it, and I thought we’d try The Lightning Thief. Nope. He did *not* like that at all. Now we’re trying A Wrinkle In Time, which seems to be going better. Meg & Charles Wallace once gave me hope that being “odd” was a better thing than fitting in, after all 🙂
Hope all went well. I love “odd” I grew up in a family of “odd”s!
Such a well written piece. So glad tht I found your blog.
Pingback: Your Child’s Been Diagnosed. Now What? | Emma's Hope Book
Pingback: Presuming Competence – Revised | Emma's Hope Book