Facing the Skeptics

It’s snowing.  In New York City.  Right now.

“Look Daddy!  It’s snowing!”  Em said this morning.

There’s nothing particularly spectacular about that comment, except to us, it’s not only spectacular, it is exciting and yet another example of how my husband and I continue to underestimate our child.  (This is less a criticism of us and more a statement of fact to illustrate a larger point.)

“Em, do you know who the president of the United States is?”

“Yes,” she spelled out.

“What is our president’s name?”  I asked.

“Barak Obama,” she spelled.

“Do you know our vice president’s name?” I asked, thinking this might be taking things too far.

“Yes,” she spelled again.

“What is the name of our vice president?” I asked.

“Biden,” she wrote matter-of-factly.

“Communication is the most essential use to which spelling should be devoted.  It should not be used as a test or an exhibition piece.  Try being confined to a sentence a week and see h ow you feel about using that sentence to answer some stupid question about whether you live in St. Nicholas.  If Rosie had spent all her time giving tests we would not have had time to use spelling for our own communication.  Crushing the personalities of speechless individuals is very easy: just make it impossible for them to communicate freely.” ~ Anne McDonald from the book Annie’s Coming Out

This is what we are striving toward.  Annie’s comment here is one I have read and reread and yet find so difficult to apply because I am in a near constant state of disbelief when it comes to all that my child is capable of.  I write often about presuming competence, I write about how we dehumanize Autistic people with the language that is commonly used to describe them.  I write about how important it is to treat all people as equal.  I talk about human rights and how the rights of those who are Autistic, particularly those who do not speak reliably or at all, are dismissed, ignored or simply not acknowledged.  And yet I underestimate my child’s ability constantly and without meaning to.

On a daily basis she writes something that blows my mind.  EVERY DAY.  Read that again.  Every.  Single. Day.  It’s like living in an alternate universe.  Every day I feel excited to know what the day will bring.  Every day when I sit down with her I am prepared to feel that mixture of excitement, surprise and overwhelming gratitude.  Every day I think, will I ever stop being surprised?  How long will it take?  I don’t know.  But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in  all that is my daughter.  I am sincerely grateful to read what she tells us, and grateful to all the people who have made it possible for her to do so.  Grateful doesn’t cover the emotions, but it’s the best I can do at the moment.

Yesterday in her *RPM session (follow this link to read more about RPM, which is not the same as FC or facilitated communication, though there is some overlap in that they both presume competence and treat the person with the respect most of us take for granted) she was asked, “What else has an engine?”

Emma spelled out, “Lets say leaf blower.”

My smile was like the Cheshire Cat’s, from ear to ear.  Leaf blower?  I LOVE that!  And later she asked for a clarifying question and then wrote a wonderful answer to a question about what changed once we began using automatic train engines.

“Until I could prove that they were intelligent nobody would come and assess them.  Guilty until proved innocent.  The children were profoundly and hopelessly retarded until they could prove they were intelligent.”  ~ Rosemary Crossley from  Annie’s Coming Out

“It was simply too threatening; my discovery questioned the basic assumptions on which care was offered…”  ~ Rosemary Crossley from Annie’s Coming Out

My daughter is one of hundreds of Autistic people who are writing and typing to communicate and in doing so she is proving every day how extremely gifted she is.  We are at the very beginning with all of this.   There are others who are far ahead of us, those who have published their thoughts, with more being published all the time.  Incredibly, what Rosie experienced, those deeply held prejudices back in the 1970s, continue to flourish today, now more than thirty years later.

“This was one of our standard problems:  people who doubted the children were always so sure of themselves that they openly expressed their skepticism in front of them.  It did not occur to them that if they were wrong they were terribly rude, and that they were making it very difficult for the children to respond to them.  How do you talk to someone who tells  you that they are convinced that you cannot talk?  What are they going to ‘hear’ when you try to talk?” ~ Rosemary Crossley from Annie’s Coming Out

We are living in a time when more and more parents, educators, people who work with Autistic people and Autistic people are facing the skeptics.  We are offering continued proof of our children’s and Autistic people’s intellectual gifts, indisputable evidence of all they are capable of.   My daughter is but one of a great many.  As long as she gives me her permission, I will continue to report some of what she is saying here while hoping that one day soon she, and others like her, will no longer be placed in  the insulting position of having to prove their vast intelligence, and themselves, to anyone.

Rosemary Crossley and Anne McDonald

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27 responses to “Facing the Skeptics

  1. I love this post Ariane. You echo my sentiments exactly. I am blown away by what my son expresses to me through spelling each and every day. It is such a miracle (a miracle achieved by hard work and not magic) beyond my wildest dreams. Yet at the same time it completely confounds me that those who are in the strongest position to help our kids, besides parents, are the most hesitant to embrace what can change our kids’ lives for the best. If they would only believe, I know not only would they positively affect our kids, their own lives would be hugely blessed as well!

    • “A miracle achieved by hard work and not magic” YES! How often do we hear how their communicating through writing must be something that just suddenly happened over night as though it was easy OR, conversely it is either disbelieved as the imaginings of pathetic yet stubbornly hopeful parents or our children are unlike any other, anomalies that no other child resembles. People grab onto these ideas far more readily than the idea that what we are being told about autism and Autistic people is simply incorrect.

  2. So exciting to see what’s Emma is thinking and seeing and hearing. We always knew she was brilliant and now there’s no doubt. There are great things ahead for her—lots of “snow days.”

  3. I always find it annoying: I tell people my son is smart, because I know it, but they don’t seem to believe me. Then they get all surprised when he says the ABCs and I’m like, “yeah, I told you. And he can spell his name and our names, and do math…” So then they say he must not really be Autistic. We need to work on changing society’s attitudes/perceptions of what autism is.

    • Arianne your blog is awesome and I believe your posts are a real blessing and gives parents like me the strength to keep fighting for the rights of my nonverbal daughter. Hopefully the education pendulum will swing the way of respect and listening to the voices through the writings of all the autistic people who have been so kind to share their experiences of the world as they have been forced to live it in silence and often mistreatment from even the most well meaning educators. Brooke has had a handful of decent teachers but none really presumed competence. Brooke will talk to her older sister on a letter board using fc because of her need for the support. Her sister started this when she was 11 and Brooke was 8 and we first found out of her abilities through our private speech therapist. Her sister had her make a Christmas list that first year. She had Brooke make a joke book and name her baby dolls. Some of the names were crazy. I asked her sister to ask Brooke where the names came from as I had never heard some of them. Brooke told her the names came from the people’s court on t.v. Brooke doesn’t sit and watch t.v. but it is usually always on so this made since. There are a few more wild stories over the past 12 years that Brooke was able to spell out with her sister, but now Brooke is 20 and her sister is 23. They still talk a little on the board together, but the sad news is can you imagine what it was like for Brooke’s sister at 11yrs. Old to actually communicate with her sister and to not be believed. Oh the critics, mostly teachers said well she is just making that up because Brooke doesn’t do that with us. It is terrible and sad for Brooke but what it did to her sister and the anxiety she has even today is awful. Also, many teachers don’t believe in the academic presentation for Brooke because 1. She is nonverbal and 2. She has difficulty with dressing, eating and pottying. This is her body not cooperating with her mind. She is ambulatory but she is hypotonic in her hands and hypertonic in her feet. Anyway to make a very long story a little shorter. I told a special education director one time that I sure hoped Brooke’s nonbelieving teacher never had a stroke and couldn’t talk and then be told oh she can’t read a book because she doesn’t have a good mind anymore just because her body doesn’t work. My philosophy is it really doesn’t matter the condition of a person’s body one should be respectful to all people and presume competence whether the person has had a stroke or is in a coma, if it were me in that situation i would want to be treated respectful and not talked about just because of my body. I am sorry this is so long. I just feel like I finally found a place that thinks more like I do and I finally feel validated in my thoughts. Ariane and all your knowledge and research and wonderful bloggers and commenters sharing the experiences and voices of the so thought voiceless is bound to make a huge impact on change for the better. I know Emma will continue to amaze and bless you. Thanks for all you do and share with others. Brooke’s Mom- Diane

      • Oh thank you Diane. I’m so sorry to hear of the impact other’s inability to see what is right in front of them has had on both your daughters.

        I really appreciate hearing from you!

    • Kelly – Yup, because to just believe they’re wrong can’t be right…

  4. I am so excited for you and Rich as you get to know your daughter! When there is little to no communication, you have to make decisions for them, but when a form of communication evolves, one is full of emotion…regrets of not seeing the intelligence, but so thrilled to finally get to know who this beautiful child and when she is ready, to share her likes and dislikes, as she picks her choices in food, clothing, etc. You cannot believe all the intelligence she carries within her and you cannot listen to her enough!

    As you are aware, Jenn’s journey began much later, but we are still in awe of the comments she comes out with, how she preceives life, and her deep compassion for those with disabilities and cannot verbalize their thoughts.

    Our journey is far from over, and we have ridden on rocky turf, but we have been blessed by our person with Autism, for the insight, the true insight of what she has shared. We love her dearly.

    • I love hearing that you are still in awe. I actually hope I never lose that, for it is a wonderful thing to feel when in the presence of both our children, just awe at who they are and their beautiful minds!

  5. Reading about Emma fills me with such joy and hope. Because of reading your blog I constantly question everything and are trying to see past the image of autism prevalent in our society. And of course presume competence, always. Thank you for your writings.

  6. Yes – everyday I have to pinch myself when I see what my son Christopher has ‘said’ , and everyday I get annoyed by the people who seem to think that he is just the exception. He is not the exception – our children have output problems not input problems !

  7. As I seem to say so often after reading your words, “Amen.”

  8. Why is there only one like button? I want to like this an infinite number of times. 🙂

  9. Thank you Ariane for all you have taught me:

    Emma, joy, Ido, courage, Wretches and Jabberers, determination, Soma, hope, Rosemary, Presume Competence, indignation, Loving Lampposts, dreams…and all the rest.

    As a result of the wonderful things I have learned from you, I have confidence in my adorable, autistic, clever, non-verbal, son learning one day to communicate. I have gone from I *think* he can to I KNOW HE CAN.

    xx

  10. Love this so much 🙂 Emma is amazing

  11. Being amazing runs in Emma’s family.

    I can speak although I tend to say too much or not enough. It always feels awkward. It wasn’t easy to get to that point even. Sometimes that ability goes hurtling away which while an inconvenience does freshen up, as if I could forget, who much people confuse the ability to produce speech with not only being intelligent but deserving dignity.

    Writing will always be easier and less chaotic and confusing. I don’t even truly understand why any person finds that surprising. People have kept journals for almost as long as it wasn’t a massive pain in the posterior to haul them around… That some thoughts are only fully thought through on paper or now on a screen is not radical or new. The first thing I always did with a non verbal client who could see was attempt to teach them their abcs even if all they managed was to pick out the first letter of their name it was inevitably more of a start than anyone previously had thought they could manage…

    I was told I was wasting my time so often I eventually gave up being indignant about it. I pointed out over and over I was doing my job while wasting my time so it was mine to waste. It never was wasted. Even in children I didn’t see often I gather the fact I insisted on wasting it that way seemed to plant some seeds of doubt.

    I know I don’t understand how “normal” people think. I just can’t wrap my head around why people don’t supplement communication. When I was young there were experts who thought teaching sign to deaf kids was horrible as they would not be motivated to learn to speak. Since you can’t actually buy shares in speech pathology graduates who thought that up? Seems kind of common sense that multiple methods of output like input are not a bad notion.

    I’ve never regretted a second I spent with any of the kids I worked with on this. It inevitably paid of in many ways large and small. I always remember a mother who choked up on coming in. I thought I had done something wrong. She was a very generous mother as far as wages which she paid out twice a day so she would not be the one doing battle with the complex feeding needs of her particular kid. She remarked when I asked what I was doing wrong that it was the most normal activity anyone had ever done with her daughter and she was just happy. I don’t even know if her daughter ever learned her alphabet but trying was very worth it. The people nagging us about age appropriate activity would sooner steal the kid’s wind up toy than consider most kid’s her age were learning to read and write. They were the experts, and inconveniently enough often my supervisors but they were willing to reluctantly check their exasperation at the door in the face of it being hard to find caregivers and the lack of parental complaint.

    Some normal person really has to explain that to me one day, I have never been able to make it make sense and these things are still very much policy… I wish I had kids of my own. I would have been pretty undauntable if I had the authority to actually ask, “Let me get this straight… My kid has one thing we know for sure she loves and you want to take it away but meantime you are assuring me you know all the things she will never do? Get out of my house!”

    • (((Gareeth)))

      “My kid has one thing we know for sure she loves and you want to take it away but meantime you are assuring me you know all the things she will never do? Get out of my house!” ~ Putting this to memory should it ever become necessary to say!

      • It doesn’t seem likely you will need those precise words but someone will. Well worth having hypothetical offspring just in case.

        When I first started doing it I had to be vetted in an exhausting way including a medical and so my doctor had to say my autism was not going to be a work problem but knowing first hand the weird things people impose on kids with a label, with the respectability a few years later of a degree, and being stubborn and intractable where it really matters was if anything an asset for that work.

        Preference is such a building block of who a person is. I will never understand how anyone who is supposed to be in a position to tell people what to do wouldn’t know and respect that. What your favorite this and that are the questions typically developing children get asked all the time but for the not so typical your favourites can be questioned and change thrust down on you.

  12. Now you’re getting the output sorted, what about the input? Is she into Harry Potter, or the Hobbit, or – what do girls read these days? Hunger games? Ask her that…

    • It probably won’t shock you to learn that this question, this seemingly obvious question is not one I have thought to ask… Yeah, we have a long, long way to go here.
      The minute I read this from you I thought – (expletive) why haven’t we asked her this? So I will humbly tell you that I will report back. The degree to which we’ve bought into this “othering” continues to boggle my mind… Thank you for asking this question.
      On a side note, we did just finish The Secret Garden and Winn Dixie and are in the midst of Little Women and The Lightening Thief, while The Biography of Helen Keller remains a favorite.

  13. “But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in all that is my daughter.”

    Haven’t yet finished reading all of your piece yet, and had to break off to say that this is the “juice” of things.

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