Tag Archives: autism spectrum

Shifting Our Beliefs

Posted on November 26, 2013 by | 7 comments

“It’s a simple program, but it’s not easy.”  These were the words I remember someone saying to me during those first few weeks so long ago when I entered a 12-step program.  As with most of the things people said during those first few years when everything was still a blur, I heard the words, but didn’t really understand or care what was meant.  Not really.  The slogans seemed trite and silly. I heard them, I read them, but I didn’t pay much attention to them other than to make fun of them.  And then as the days of not acting on my addictions piled up and my head began to clear, as life continued along and I with it, I started to make sense of this phrase and so many more that were said during those early days.

Like everything in life, things are rarely how I expect them to be.  The years since I walked into those recovery rooms have not unfolded as I thought they would.  I am not doing what I imagined I would be doing, my life does not resemble the life I once led nor does it resemble the life I imagined for myself.  All of it comes as a surprise.  Perhaps the biggest is how much I have come to love so many of these slogans that I once viewed with contempt.

The things I learned in those early days of recovery are things I continue to apply to my life now:   “Take it easy,”  “Keep it simple,”  “Practice the principles in all our affairs,”  “Circumstances do not make us who we are, they reveal to us who we are,” “Don’t curse the darkness, light a candle,”  “Compare and despair,”  “We’re responsible for the effort, not the outcome,” “Change is a process, not an event,” “resentment is like drinking poison and hoping the other person will die,” “sorrow is looking back; worry is looking around; hope is looking forward,” “serenity is not freedom from the storm, but peace amid the storm,”  “F.E.A.R. – False Evidence Appearing Real.”

There are too many program slogans to list here, but almost all of them can be applied to every aspect of my life today, particularly when it comes to autism.  There is so much that I feel discouraged by when it comes to autism, what is said, what we are told, what is believed to be “true”.  As I continue to learn, as my daughter continues to write, the farther away we drift from the commonly held beliefs about autism and my child and friends who are Autistic.  I read articles written about autism and Autistic people and I recognize none of my friends, daughter or anyone I know.   The articles and views seem completely disconnected from reality.  I read what so many other parents say and I have to remember to remind myself that I once believed these things too.

Recently someone sent me the link to a book review of Naoki Higashida’s book The Reason I Jump.  The review was written by someone who works in the field of autism and yet was incredulous that Naoki talks with such insight about his social interactions, speaks of feeling ashamed when his body does not cooperate with his mind.  The reviewer wonders aloud what (if any) the implications are for others who are non-speaking and Autistic.  Of everything written about Naoki’s book, this was the review that has continued to haunt me.  Here is someone who has spent his life researching and working in the field of autism and yet, Naoki’s book comes as a surprise.  How is this possible?

It’s possible because those who are in the field have been given incorrect information and then look for verification that align with what they’ve been told.  Yet this bias is not how research should be done.  Until we are willing to accept the idea that maybe, just maybe what we believe to be true is not, we will not be able to believe anything different.  And as a result all of our Autistic children, friends and people will suffer the consequences.

Emma – 2003

*Em 2003

7 Comments

Posted in Addiction, Autism, Parenting

Tagged , , , , , , , ,

A Word of Thanks

Posted on November 19, 2013 by | 3 comments

Em and I are traveling again, so after publishing Emma’s post debut, and what a first post it was (!!!!), for the “This is Autism Flashblog” we got on an airplane.  As we didn’t get to our hotel until after eight in the evening, we didn’t read all the lovely comments so many of you left until quite late.  Thank you.  As a parent it means a great deal to have such an outpouring of support and encouragement for Emma’s first post, particularly as it was a post that was incredibly personal.  Emma wrote, “Thank you everyone”  before falling asleep.

The flashblog has almost 250 posts at the moment.  It was a wild success and shows the range and complexity of views about what exactly “autism” is.  Anyone who hasn’t gone over there to read what others had to say, I encourage you to  spend some time doing so.

There is so much I want to say about the flashblog, autism, grassroots protesting, being the parent of a child whose neurology I do not share, but have overlaps with, functioning labels, how we can all influence change, how the more of us who join in, the quicker these shifts will occur, why I keep showing up here day after day instead of sleeping for another couple of hours, but I don’t have time this morning as we have an appointment in another hour that we cannot be late for.

Thankfully I had the foresight to opt for a GPS system on our rental car and do not anticipate getting lost as I did the last time we made this trip.  As a testament to this decision, Emma did not once shout from the backseat, “Oh no!  We’re going the wrong way!” last night, for which I am extremely grateful.

The adventure continues!

Em

3 Comments

Posted in Autism, Parenting, travel

Tagged , , , , , , , ,

A Guest Post From Richard Long…

Posted on November 14, 2013 by | 31 comments

What follows is a guest post from my husband, Richard Long…

After Ariane’s post What’s Wrong With Autism Speaks yesterday, I thought I’d throw my three cents in here. I didn’t know ANYTHING about autism when our daughter Emma was first diagnosed–except that it was BAD, very BAD and that I should be terrified. My wife went out and read most of the books written about autism at the time, mostly written by parents of autistic children documenting their torturous journey, many about the miracle cure they found that “cured” their child.

Like most guys, I Googled my ass off to try and bottom line the situation. And the news was BAD. My child was probably incapable of feeling empathy, of understanding sarcasm, of connecting with other people. Wow. Since Emma was making very little eye contact at the time and was not interested in cuddling or hugging, I thought this all had to be true. Poor Emma. Poor Ariane. Poor me.

I was told life would be difficult. Meltdowns, speech and language processing issues, OCD symptoms, toilet training. I watched horrifying videos like the ones made my Autism Speaks, (I won’t post links here, but they are on the other posts I linked to earlier if you want to get the crap scared out of yourself as well). I was told that a cure may be possible if we ponied up enough $ to Autism Speaks or TACA, so I opened my wallet. I was told about other miracle cures from casein-free, gluten-free diets, hyperbaric chambers, even stem cell therapy! We actually tried them all. We were so very desperate to “save” our daughter.

Then a true miracle happened. Ariane discovered the blogs of adult autistics who were telling a very different story. They DIDN’T want to be “cured.” Autism was part of who they were, as integral as any other component of their personalities. We were told that there were many advantages of autism: heightened senses, high intelligence, great analytic capabilities. I discovered all the famous inventors who were probably autistic.

Most importantly, we learned that what you see isn’t necessarily what you get.

We thought our daughter couldn’t understand what we were saying. Why? Because A) she didn’t react like she was listening B)  she didn’t comment on what we were saying C) she never spoke about things like that herself and D) she didn’t seem capable of very much speech at all. But now that we have found new communication systems, it turns out Emma understands EVERYTHING we are saying and has AMAZING things to say about her world. She is HIGHLY intelligent (I suspect she is more intelligent than me). Her sense of humor is incredibly sophisticated. She thinks about some things we never considered at all and sees things in such a creative, unique way.

Live and learn. It took us SEVEN YEARS to realize these things. During that time, we really did think of our lives as tragic. And now I can see how much better all our lives would have been if we had received the right information about autism from the very start. Information that came directly from autistic people, rather than people who claimed to “Speak for Autism”. Information from the parents of autistic children who had also discovered the truth about autism from adult autistics. Parents who weren’t looking for a cure, but instead trying to help their children communicate more effectively and deal with the other issues that make life difficult.

It’s a brave new world for us. Thank god. “Better late than never” I keep repeating to myself. But better yet, my hope is that all children who are born autistic are lucky enough to have people around them who actually understand what this means, that don’t look at this as tragedy, who are ready to help in the best ways possible because they have truly useful information available to them.

And I have never seen any useful information come from Autism Speaks. Then again, if they had said something useful recently, I wouldn’t know because I stopped listening to a group that never speaks with the voice of actual autistic people.

Speaking of which, yesterday Emma had another writing session, which Ariane will post in full on her blog tomorrow. It is mind-blowing so don’t miss it. Here’s a preview: In the session before last, Emma was taught about an inventor of oil pumps for train steam engines. At the end of that session the teacher asked Emma to think about what she would want to invent. So yesterday the teacher asks her what would be a really great thing to invent. Emma’s response:

“Let me tell you that it is not a train engine.”

What is it then?

“It is more from the future. It is a spaceship.”

I can’t wait to show her my UFO videos tonight.

Summer 2008 ~ Richard, Em and Ariane

Richard, Em & A

31 Comments

Posted in Autism, Autism "Awareness", Parenting

Tagged , , , , , , , , ,

Autism is Not Like Cancer

Posted on October 31, 2013 by | 32 comments

I’m traveling and haven’t had time to blog.  But a couple of comments came in on the last post about How We Discuss Our Children that made me think a bit more about all of this.

When my daughter was first diagnosed we were told a great many things that frightened us as well as some things that were very encouraging, but when those, seemingly “good” things did not come to pass, we became even more frightened. In part because it became clear no one actually knew what they were talking about and coupled with that realization was the idea that if they didn’t know what they were talking about, how were we going to help our child?  Add to that our expectations, no one talked with us about any “positive” aspects of the diagnosis, nor did anyone suggest anything that sounded remotely “good”.  All of this was done with good intentions, lots of well-meaning advice, but all of it came from non autistic people who were operating under the assumption that our neurology was the gold standard and one that everyone should aspire to, as if that were possible.

Autism was framed in the “disease” model with people alluding to cancer as an appropriate analogy. As I have family who have both died and survived cancer, and have witnessed what chemotherapy does to a person, both when it works and does not, this was particularly awful as I took it literally and began to see any and all “treatments” as a kind of “chemotherapy”.  I even consoled myself with the idea that this “risky” treatment would all be worth it, if it “saved my child’s life”.  I spoke of it in this way and thought of autism as “life threatening” because I could not imagine a life without language, friendships, empathy, etc and this was what we were being told autism was.  This is an incredibly dangerous idea for any of us to engage in and is why I find it incredibly unethical for organizations and public figures to talk about autism and Autistic people in this way.

Now add to this the financial toll of all those unverified “treatments”, the appointments, dealing with schools and the general anxieties that come with parenting on too little sleep and too much caffeine, along with a parent who has expectations that something she does will “save her child’s life”, and that’s a pretty great recipe for discontent, depression, anxiety and upset.  Particularly when it becomes increasingly clear that there is little available that will actually prove helpful to our kids.

Think of how different it would be if our pediatrician was a non-speaking Autistic person and our non autistic older child had a couple of Autistic teachers and another kid’s parent was Autistic and one of our closest friends happened to be Autistic and Autistic kids were not segregated out of schools and work places accommodated their neurology and made it easier for Autistic people to be among us.  Part of that initial fear we parents often have is because we have never met anyone who is Autistic.  All the information we then receive is taken as fact and not questioned immediately.

So yeah, there are things that really do need to be addressed and changed because the stress of parenting is massively exacerbated by society’s use of the medical model and because of the way we have segregated those who are Autistic. It isn’t that a child who has all kinds of medical issues and co-occurring diagnoses will not be cause for concern, it is that to add to these concerns the – oh-and-by-the-way, autism-is-an-epidemic-that-is-analogous-to-cancer-try-anything-and-everything-to-erradicate-it, is increasing everyone’s pain and suffering, including our children’s.

32 Comments

Posted in Autism, inclusion, Parenting

Tagged , , , , , ,

How We Discuss Our Children

Posted on October 28, 2013 by | 73 comments

Some people say that parents like me are dismissive of how difficult it is to parent an Autistic child.  They say that we are choosing not to dwell on the negative and that it’s important that the other side be shown.  They suggest that by NOT discussing how very challenging it is, we are doing harm, that it is in the stories of horror and devastation that services are gotten.  They say that pathologizing autism is necessary because without talking about it as a pathology, funding would be diminished or cut off.  Many people assume that those of us who write about the positive aspects, the joys, the triumphs that we experience as parents of Autistic children, we must have “high functioning” children and that we cannot possibly know what it is like to have a child who is “severe”.   We are accused of diminishing or dismissing the suffering other parents experience.

When I was fairly new to all of this, not so long ago, I thought nothing of writing about my child’s latest upset in graphic detail.  Not so long ago, I wrote about my child, believing she did not and could not understand what was being written, that she would never read my words, that she could not and did not understand what I said to others, what I wrote.  I posted photos of her, never once considering whether she wanted such a photo posted on the internet for all to see.  It did not occur to me to ask her.  Literally, it did not occur to me.  These are things I now am aware of.  Posts have been deleted, photos have been removed, but had I continued to listen to what I was being told, had I not seen and met non-speaking Autistic children, teenagers and adults who wrote how it felt to be spoken of, written about, and treated as though they weren’t there, I don’t know that I would have thought to stop.

It isn’t that parenting is never challenging, hell, life is challenging, it’s that in talking about parenting it too often sounds like we are blaming our child for our suffering.  It’s like when my husband and I fight and I think to myself, if he didn’t do x, y and z, I wouldn’t get so angry and while there may be some truth to that, it also isn’t owning up to my part in the fight.  So many people write about parenting but they don’t seem to connect it to how they respond to this situation with their child, is how they respond to stress, not getting what we want, impatience, dealing with upheaval, etc.  It seems to me, the less common conversation is the one that talks about personal responsibility and honoring another person, instead of blaming them for what ails us.

In all of this, the Autistic person, whether they are a child, teenager or an adult, are being “treated as though they weren’t there.”  This was the thing that changed everything for me.  Realizing that there is a person there.  Right there.  Right here.  Right in front of me.  And this person has feelings and thoughts and her opinions about herself are affected by what I’m doing and saying about her.  She is just like any other child, who would feel tremendously sad and even traumatized knowing that her parent blames her for their pain and upset.  

This post is being interrupted by more pressing matters, so I will have to come back to this when I have more time…

Em on her pogo stick copy

73 Comments

Posted in Autism, communication, Parenting

Tagged , , , , , , , , , ,

To Educators, Therapists & Doctors

Posted on October 25, 2013 by | 61 comments

You are the first people most parents meet after getting our child’s diagnosis.  Therefore you have tremendous influence on how we view autism, what that means or doesn’t mean, what services we seek, and how we then view and treat our child.

That’s a huge responsibility.

The onus is not entirely on you, of course, but don’t kid yourself, you have the power to change the course of a child’s life and their family’s with your knowledge and what you tell their parents.  If you don’t know the answer to a question, do not pretend you do.  Do not rely solely on whatever university you went to, or the medical journals you may subscribe to, the most recent statistic, medical study or your colleagues for information.

If you’ve been taught a particular therapy or  teaching method is the only scientifically proven method to “treat” or teach Autistic children, find Autistic people who were given that therapy or method as children and learn what they have to say about it.  If you find a number of Autistic people are speaking out about a specific treatment or method, saying they have post traumatic stress as a direct result, reconsider your position.  If you still feel this therapy is important to pursue, ask yourself why and at the very least, inform the parents who are considering this method that there are Autistic people who believe it was damaging to them.  It doesn’t matter whether non autistic people and professionals agree, you have an ethical obligation to tell parents that this treatment or method has caused damage to a great many.

If you think you know, if you are convinced you are right about some aspect related to autism, do more research and make sure what you think you know, is in fact true, if it isn’t or if it isn’t clear, then do not present it as though it is the “truth”.  I don’t care how well known or famous you are in the field of autism, if you are not engaged in reading and talking to Autistic people outside of a clinical setting, you have more to learn.  And do not be afraid to admit when you don’t know something or if you find you are wrong about something you previously thought to be true.  Most of us would prefer being told by a professional that you don’t know something or thought you knew something, but now realize you were wrong than to be given incorrect information.  There’s massive amounts of incorrect information out there.  Please.  Don’t add to it.

You have a responsibility, not just to Autistic people, but to those of us who are their parents and to your profession to read everything you can about autism and what it means to be autistic.  If you’ve never read anything written by an autistic person, now’s the time to do so.  If you cannot bear the idea of doing so, if you believe your various degrees are enough, if you feel annoyed, believe I’m being presumptuous by suggesting you do more, then find another profession.  You aren’t doing anyone any favors by continuing to pursue a career in a field that has so few concrete answers but that you are convinced you know all there is to know.

Even if you’ve read one or two books, maybe seen the latest documentary featuring one or two autistic people, it’s not enough.  You need to read blogs and books written by non-speaking Autistic people, there are more and more of them being published every year.  You need to read the writing of people who speak, can sometimes access language, access language all the time, but do not say what they intend, people who have intense sensory sensitivities, those who are hypo sensitive as well as those who are hyper sensitive and those who have a mixture of the two.

Examine your beliefs:  Do you believe that non speaking Autistic people cannot speak because they aren’t trying hard enough or because they do not have anything to say?  If someone’s facial expressions are hard to read, do you believe that means they do not feel emotion?  Do you think Autistic children lack empathy?  Are you convinced that Autistic people are unreachable?  Do you believe Autistic people have no desire for friendship, lack the ability to love, cannot understand what is being said and written about them?  Do you think that if an Autistic person acts more like a non autistic person they have “recovered”?  Do you believe this is a worthy goal?

Please.  Do all of us a tremendous favor.  If you are entering the field of autism or are an educator, therapist, doctor or professional in the field, in whatever capacity that may be, question everything, read, ask questions, examine your beliefs.  Learn what so many have gone through at the hands of well-meaning professionals.  Remain curious, stay open to new ideas and continue to adjust what you believe.

I was terrified when we received my daughter’s diagnosis.  I knew very little about autism and I looked to all of you for answers.  The answers I was given I’ve since learned were mostly incorrect.  Because of those answers, we made a great many mistakes.  Mistakes that hurt our daughter.  Other parents do not have to go through what we went through.  There is so much great information out there, but often finding it can feel overwhelming and impossible for parents.  You have a great deal of power to affect how families think about and respond to their child and their child’s diagnosis.  You can help so many families help their children in ways that are respectful, by honoring them and their neurology and not making them feel they are broken or are to blame for how society misunderstands and treats them.

To those non autistics who this letter does not apply, you who have dedicated your lives to helping children like mine, I thank you.

Rosemary Crossley, Soma Mukhopadhyay, Christine Ashby, Anne Donnallan, Douglas Biklen, Mary Schuh, Leah Kelley, Pascal Cheng, Harvey Lavoy, H. Markram, K. Markram, *Marge Blanc, Susan Marks,  Paula Kluth, Char Brandl, Cecilia Breinbauer, Phil Smith, Barry Prizant *do not have photos* and so many others, thank you.

Rosie Crossley

Soma Mukhopadhyay

Christy AshbyAnne DonnallanDouglas Biklen

Mary ShuhLeah

PascalHarvey LavoyH. MarkramK.Markram

61 Comments

Posted in Autism, Blogs By Autistics, Parenting

Tagged , , , , , , , , ,

Humanity

Posted on October 21, 2013 by | 12 comments

“Please try to remember that what they believe, as well as what they do and cause you to endure, does not testify to your inferiority but to their inhumanity and fear.” ~ James Baldwin from The Fire Next Time

If there is one thing I want my Autistic child to know, it is this idea written by James Baldwin.  He was writing about race, but his words apply to any who have been on the receiving end of prejudice.

I think about my father a great deal.  A proud, athletic man who broke his back in a horse back riding accident which eventually forced him to rely on a wheelchair to get around.  My father used to call me every Sunday.  We would chat about things that interested him, the weather, his garden, his cat, the dogs, the horses.  He would ask me about what I was working on.  He was tremendously supportive of my career.  I was battling my own demons, demons of my own making, but demons never-the-less that I rarely discussed.  I would ask him how he was, but he would always answer, “I’m still here.”  I knew that I would have to call my mother to learn about his physical well-being  if I wanted anything more in depth.  He never complained.

One day I told him I was tired of him always saying he was fine, I really wanted to know how he was.  I wanted him to tell me the truth.  He said, “You want me to tell you about the constant pain I’m in?  You want me to tell you about how my bodily functions are slowing down and what that’s like?  Is that what you really want to know?”  I remember pausing for a second and feeling confused.  And then felt terrible for my hesitation.  What I really wanted was for him to be fine.  I wanted him to be happy and energetic and well.  I wanted him to feel good and he did not.  He did not feel happy and energetic.  He was in pain.  Physical and emotional pain and a lot of it.  At the time I wanted to be the one who would change his circumstances.  I wanted to be able to make him better.  I wanted to save him from his pain.  But I couldn’t.  I couldn’t.

When my daughter tells me she wishes there was a cure for autism, I feel that same stab of pain.  This is the price of our inhumanity.  I think how society and my past actions have done this to her.  All those people, the media, the articles, the doctors, the therapists who spoke of her neurology as a terrible thing, a neurology that is not understood, that most see as inferior.  And I blame myself for having bought into this belief for so many years.  The idea that if I could just find the right pill, the right bio-medical intervention, the right therapy, we would successfully alter her brain and make it so she could talk and have conversations with us, so she could learn to “pass” if she wanted to, so that she’d at least have that option if she chose it, despite the devastating price she would have to pay to achieve this.  So that she’d have a chance.

But she couldn’t achieve this goal and I learned to stop asking her to.  I found other methods, not therapies, not treatments, but rather ways to teach her, ways to work with her specific neurology, and I keep practicing these methods because I have seen how others who created them and have trained in using them are able to converse with her through writing.   While I do all that, I keep telling her and showing her that she is loved and of value.  She is worthy and perfectly imperfect and deserves to be treated kindly and as the intelligent, sensitive, talented human being that she is.  She has as much right to be in this world as anyone else.  She is equal to her peers not less.  Being indistinguishable is not a goal.

My daughter’s neurology is not inferior.  Those who believe this are wrong.  My daughter is no more inferior than I am.  She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier.  It is our inability to lessen her challenges that is at fault, not her neurology.  It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us.  We must never give up.  We must never allow ourselves to fall into lethargy or the false believe that we are better than anyone else.  We are not.  We are human.  Imperfect.  We need each other.  We need to push each other to do better.  We can do better.  We must do better for our children, for this world, for all humanity.

Jen at Down Wit Dat is doing a blog hop.  It is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others are encouraged to share posts. 

These posts brought to you by:

Powered by Linky Tools

Click here to enter your link and view this Linky Tools list…

12 Comments

Posted in Autism, human rights, Parenting

Tagged , , , , , , , , , ,

One of My Favorite Blogs…

Posted on October 12, 2013 by | 13 comments

There’s a blog I love called, Musings of an Aspie written by Cynthia Kim.   Cynthia Kim also has a book, I Think I Might Be Autistic , which is now available as an e-book and in paperback.  She writes about her decision to pursue a diagnosis, with lots of tips for those who might be thinking of doing the same.  “I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults” begins from that “aha!’ moment, addressing the many questions that follow. What do the symptoms of ASD look like in adults? Is getting a diagnosis worth it? What does an assessment consist of and how can you prepare for it?”  But the book is much more than just advice about whether to get a formal diagnosis or not.  It’s about identity, who we are, what that means and why we care.

On Cynthia’s blog she writes about marriage, motherhood, being a “self-employed aspie” as well as a whole host of other topics.

Here are a few of my favorite quotes and posts from her blog:

From Beyond The Talk:  What Else Autistic Girls Need to Know About Puberty

When it came to puberty, my parents did what many parents in the seventies did: they gave me a book about puberty written especially for girls. It was a slim cranberry hardback with an ambiguous title like “Everything is Changing.”

I was a voracious reader, so I would curl up in my beanbag and scour the pages for clues to the mysterious changes that were on the horizon. I think I had many of the same fears, anxieties and curiosities about puberty as my friends had. Certainly my body went through the same changes that other girls experienced. However, I think there are some areas where girls on the spectrum would benefit from additional information or guidance. That’s what I’m going to focus on in this post.

Cynthia wrote a kind of parody about “NT’s” in the same writing style so commonly used when non autistic people write about Autistics.  It is perhaps, one of my favorite posts, although it’s hard to say as there are a number vying for that position.  The quote below is from her post, What is Neurotypical?

“Perhaps the most obvious giveaway is an NT’s tendency to make “small talk” or to want to “chat” with you. While small talk appears to be nonfunctional, for NTs it serves a very specific purpose. It’s a good idea to humor them and participate to whatever degree you can tolerate. If you’re patient with them, many NTs will soon feel comfortable enough to move from small talk to more interesting, in-depth conversations.

Another common sign that someone is an NT? Touching. NTs enjoy all sorts of physical contact and often use touch to greet friends, family and even casual acquaintances. While it’s hard to fathom why your real estate agent or hairdresser feels the need to send you off with a hug, try not to be judgmental while fending them off. NTs are simply wired differently.”

From Cynthia’s Aspergers and Marriage Series, Lessons From an Aspergers – NT Marriage :

The Scientist: “You don’t have to make my lunch every morning. I can pick something up in the cafeteria.”

Me: “I don’t mind. It only takes a few minutes and I know you’d rather have something healthy to eat. This way you don’t have to waste time waiting in line.”

The Scientist: “So you mean you make my lunch because you care about me, right?”

Exactly.

I will end with a quote from her post, A Cognitive Defense of Stimming (or Why “Quiet Hands” Makes Math Harder):

The obvious reason for objecting to “quiet hands”-type instruction is that it shames the child for moving in a way that is natural and comforting for them. Others have written eloquently and in great depth about this subject; I’ve linked to some key pieces below rather than repeating what has already been said.

The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.

For those of you unfamiliar with Cynthia’s work, I urge you to go now and enjoy, and for those who already know about her writing, how did my medley of some of my favorite posts from her blog measure up against yours?

Cynthia's Book

13 Comments

Posted in Autism, Autism Books, Autistic Blogs

Tagged , , , , , ,

“Look At Me”

Posted on October 4, 2013 by | 33 comments

When I was young, my father would call my siblings and me into his home based “office” when we had done something wrong.  We knew when we were summoned that we were in trouble.  I can still remember, now more than four decades later, the feeling of dread when my father would call my name.  I still remember standing before him, terrified, often angry and defiant, while he spoke to me, describing whatever it was that I’d done wrong.  And I can still remember those dreaded words, “Look at me when I’m speaking to you!”  The tone was not an invitation, but a demand, a demand for compliance, a demand for respect that I did not feel, a demand to do as I was being told.  And so I did.  I would pick a point near his eyes, without actually looking at him, sometimes it was at one of his large eyebrows, or maybe a single hair that grew from his ear, or the bridge of his nose, anywhere but into those steely blue, angry eyes.  Those eyes that when I looked into them expressed pain and anger and contempt beyond anything words could convey.  It was physically painful to look into his eyes.  It was deeply, soul-wrenchingly, painful.  It tugged at the core of my being and threatened to annihilate me.  I learned, early on, to do anything BUT look him in the eye.

For years I’d forgotten about those moments of horror when I would get called into his office.  And then I gave birth to a beautiful child.  A child who would be diagnosed with autism and suddenly those awful words would be repeated by a great many and I felt that same terror all over again.  But now people who knew about autism, professionals, people who devoted their lives to working with children on the spectrum were telling me of the importance of eye contact and oddly I found a way to compartmentalize my past, after all I am not Autistic, therefore my experience must not be relevant or similar to someone who is.  And anyway, I only had trouble making eye contact in this one specific instance, it was unrelated.

I was told autistic children must be taught to look at those who are speaking to them because it was important they learn to “fit in”, and that this was what people expect and that those who do not learn to make eye contact will be thought suspicious.  So I nodded my head and proceeded to demand that my child “look at me.”  And then I read a post from an autistic person who wrote of how physically and emotionally painful it was to be told they must do this thing that hurt them.  She said it was like looking into the depths of the other person’s soul and that often the pain she saw there was too overwhelming.  And I identified.  I understood what she meant.  I had felt that way with this one person, my father, and it was exactly as she described and it made me stop and think about what I was asking of my child.

You see, I had only had this experience with one person, it was not universal, but her description reminded me of that pain I’d felt so long ago and I began to wonder, what if that experience that I had with one person was how it felt with everyone whose gaze I met?  What would that be like?  I knew then that it would be horrible to have those words said, over and over by so many, and I vowed to stop demanding this of my child.  Whatever this might cost her in the long run, whatever others might conclude about her because she did not learn to “look” at others in their eyes, I decided it was worth it.  I did not and do not want her to ever feel that terrible feeling of sadness, of pain, of overwhelm or whatever it was that made her avert her gaze to begin with.

Interestingly, my daughter often makes eye contact, though I do not for a moment believe this has anything to do with me or anything I did or didn’t do one way or the other.  In fact my daughter wrote she likes looking at people’s eyes.  So much so that we have agreed to work on a project based on this together.  But for all who do not, who are overwhelmed, who feel physically ill or in pain, why would we demand this of them?

Eye Contact

33 Comments

Posted in Autism, diagnosis, eye contact, Parenting

Tagged , , , , , , ,

The Problem with “Use Your Words”

Posted on October 2, 2013 by | 68 comments

How many of us have uttered those three words to our kids?

Use your words!

And yet, if your child is like mine, they probably do use words.  Perhaps they “script”, words we dismiss because we recognize them from a movie, or perhaps we hear the tone and recognize it as echolalia and therefore  ignore.  Maybe we think of the words as a verbal stim or maybe we hear that those words come from a teacher, the bus driver, another kid, a friend, us…  and again we dismiss them as meaningless.  But what if we are wrong?  What if all those words our kids are nobly attempting to use ARE communicating something, but it is US who cannot make the connection?  What if our kids do not learn language as we think of language being learned, but they are learning it, in their own way, on their own timeline?  What if all those words they keep using, the ones we are told to ignore or not reinforce by acknowledging, are HOW they are learning to speak?

I am currently reading Marge Blanc’s book, Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language
and these are but a few of the questions being answered.  One thing I have not yet seen or can find in this terrific book is any mention of Tourette’s.  I am curious to know the authors opinion on how Tourette’s factors into language acquisition or if it even does.  Marge, if you’re reading this, I’m hoping you’ll comment!

In those early, blurred years after Emma’s diagnosis I remember thinking that any language was good language.  And then my daughter began to say things, things I could not and did not understand and I was told, those are meaningless words, you must ignore them, you must not reinforce them.  But maybe, just maybe those words are the foundation for others that I and others will be able to understand at some point.  My friend Ibby, of the fabulous blog, Tiny Grace Notes, told me more than a year ago about the importance of not trying to do a word for word translation of the things my daughter said, but rather to lean into the words.  I couldn’t fully understand what she was telling me at the time, but slowly I have begun to.

Marge Blanc writes, “As we valiantly try to replace our kids’ echolalia, their natural language, we feel validated when they learn to say new things.  We teach our kids a dozen functional phrases and sentences and feel satisfied that we have taught “functional speech.”  The tragedy is that while IEP goals are met, children’s linguistic potential has been ignored – and undermined.  We have forgotten how to assess a child’s developmental language level and his capacity to develop generative language.  And we have also failed to consider that the functional phrases we’ve taught might actually interfere with his potential to develop language competence.  And in the process, the echolalia doesn’t go away.”

Now add to this idea the way we are taught to ignore those scripts, that we mustn’t give them any air to breathe as we will only encourage the proliferation of similar non “language.”  So we smile patiently and nod our heads and say…

Use your words.

But not those words.  Use these words.  The words I want to hear.  The words I am now going to repeat and have you say over and over with the hope that you will say these words, my words, in place of yours.  Isn’t that really what we mean when we say “use your words”?  Use words I want to hear.  Use words I give you, but don’t, please don’t use YOUR words.

Over a year ago I wrote about how Emma advocated for herself on the school bus.  You can read that post ‘here‘.  What I didn’t spend a great deal of time talking about was how she tried, repeatedly to “use her words” but was not listened to because they did not believe she understood what she was saying.  It was only after many attempts of using the only words she knew, “you’re going the wrong way!”  “Emma goes to a different school!”  and “you have to go this way!” that she began to scream and then bite herself and eventually punch herself in the face.  Even then, when she fell to the floor of the bus, refusing to get off, crying and hurting herself, even then they continued to not listen to the words she was saying and using and insisted she get off the bus.  It was only when one of the staff at her old school heard her and recognized her and thought to tell the driver that yes, she was correct and no longer went to this school, that she was on the wrong bus, it was only then that they dialed my number and told me my daughter was refusing to go to school, and as it turns out, rightfully so.  They had taken her to the wrong school.

When they brought her home she was devastated.  I will never forget the look on her face as she descended the steps of that bus.  Before her feet hit the ground I said, “You are so awesome Emma!  You told them this wasn’t your bus.   You told them they were going the wrong way!  I am so proud of you!”  Emma still talks about that morning, that morning over a year ago when she was “using her words” and no one listened.

Use your words.

Waiting for the school bus ~ October 2, 2013
*Em copy

68 Comments

Posted in Autism, language, Parenting

Tagged , , , , , , , , , , ,

In Answer to – Medication?

Posted on September 17, 2013 by | 10 comments

A number of people wrote in on the post, To Medicate or Not with their experiences.  The post was not about medicating autism, but about some of the co-morbid diagnoses that many people who are also Autistic  have.  Quite a few people wrote about managing depression, anxiety, stress and related issues.  Some wrote about how they began trying different medications in their late teens…  “I started medication at about 19…  I started with Prozac and it went well for a while but over time it stopped working.  It did make me feel better at first.  From there and over the years, I have tried many different antidepressants for my anxiety- Prozac, Paxil, Zoloft,Trazadone for sleeping, Zyprexa, Cymbalta, Welbutrin, Effexor, and Nortriptaline.”

Many parents wrote about how they agonized over the decision to try medication and almost all of them said it was done as a last resort.  Both Autistic parents and parents who are not autistic said similar things about their decision to medicate their child.  One person wrote, “my autistic child is on ADHD meds and has been since he was four. AdderallXR until last year, now Vyvance (same med with less appetite suppression). Clonidine at night. He wants to be on them. He has told me he feels more creative and happy with his mind not looping fifty things at once.”

Another wrote, “I had been fighting the medication for a few years.  I have had anxiety since I was little.  I had the doctor refer me back to one of my psychiatrists who is willing to talk and if necessary provide a prescription.  This time we tried combining medications.  Welbutrin seemed to help a bit so we tried things like Ritalin to help increase its effectiveness.  I was able to focus much better and things seemed to go well but I got severe heart burn as a side effect of the Ritalin.  We tried Dexadrin next but it didn’t work.  I gave up for a bit and then discovered Buspar.  It is an antianxiety drug but not in a class like valium etc which are addictive. ”

Lots of people wrote about having to try many medications and often combinations of things before they found what worked.  And a number of people wrote about being judged harshly by others either for taking medication themselves or for deciding to give it to their child.  One person wrote, “…they do not know.  They pass judgment, but have not lived the experience.  They make comments and say things as though they have the answers, but they don’t.  They  don’t know what it’s like.  They can’t.  I’ve learned to say nothing and ignore the mean comments and loud whispers.”

Another wrote, “I don’t tell people anymore, because I’m tired of their uninformed criticism.”

Again, thanks to everyone who wrote about this.  Really appreciate the honesty and willingness to share your stories.

10 Comments

Posted in Autism, medication, Parenting

Tagged , , , , , , , ,

What Others Had to Say: Love, Overwhelm, Violence

Posted on September 11, 2013 by | 51 comments

Yesterday I wrote a post entitled, When Upset Turns Violent.  I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent.   I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things.  One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent.  Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment.   Many people remain silent, which serves to further feelings of isolation and disconnect from community.

Another thing I realized as I read, was how both parents and those who are in overwhelm are actually feeling similar feelings of powerlessness and wanting a safe place to go.   I identified mightily with all the feelings described and thought it might be most helpful to reprint a number of the things people have written, both from the comments section on this blog, but also from some of the emails I received.  (For those who asked that I not reveal what you wrote, don’t worry, I haven’t.)   There are too many wonderful thoughts, comments, advice and experiences to publish here in a single post, but you can read, at least some of the comments in the comments section of yesterday’s post and a few that came in on Emma’s Hope Book Facebook page.

What follows is a sampling from some of the terrific comments received.  There are many more and they are all insightful and wonderful.  So please do read the related articles at the end of this as well as all the comments from those who so generously wrote in on this blog.  Obviously, there is a huge need for more conversations like this…

A few quotes from parents –

“I just want a safe place where I can talk about this stuff.  Not publicly.  I don’t ever want to be “one of those moms”  but I want to be able to talk about what’s going on with other parents who know what it’s like.”

” I know what it is to sit in an IEP meeting begging for help for my child with my eye swollen shut and bite marks and scratchs covering my arms.”

“I am scared of ____ and that makes me feel terrible.  What kind of parent is scared of their own kid?  A kid I love with all my heart.  A kid I want to help…”

“It changes you when you live in a state of perpetual fear and not having any place to talk about that makes it  harder.”

“I would love a support group, but not where everyone sits around blaming all their problems on autism and their kid.”

Comments from others:

Emily K. wrote:  “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

Autisticook wrote a number of really powerful and wonderful comments, this is but one of them:  “I have given some thought to what I would have needed as a child to cope with my violence. I would like to start with a caveat: first of all, anyone who knows me in real life would be shocked at my description. The only people who believe I can be violent are the people I’ve actually hit. That’s about 4 or 5 people. The rest of the world calls me sweet natured and a good person and empathic and supportive of others. I’m also just over 5 feet tall and present as extremely non-threatening.

Second of all, my parents are still the most important two people in my life. A lot of people in the autism community weren’t so lucky with their parents and have a lot more to deal with as a result. I’ve been incredibly lucky to have such generous, loving people prepare me for the outside world. I have a lot of emotional stuff that’s coming out now that I know about autism, but I don’t blame them for any of it. So here goes: the things I needed as a child and didn’t get.

1. Don’t blame yourself. Don’t punish yourself for not being a perfect parent. I can tell when you feel bad and what I’m learning is that I need to be perfect as well. When I’m not, I feel as if I’m disappointing you and making you feel bad. I want you to be happy with me. But when I make you feel bad, I feel bad as well and that is making me even more stressed out because I’m still learning to deal with my emotions.

2. It will get better. I’m trying to learn how to walk. You can show me how it’s done but you can’t force me to walk. It might take me a bit longer to learn this, or I might do it a bit later than others. But it doesn’t mean I will never learn. I just need someone to show me and teach me and support me. This is as true for feeling upset as it is for walking. Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.

3. Help me recognise my triggers. I might come home from school cranky and tired and overwhelmed. My brother sticking his tongue out at me might simply be the last drop. If I am not saying much, if I’m curled up in the big chair kicking my legs out, or if I seem to be absorbed in an activity like playing with my toys and not paying attention, it might be because I’m trying to self-regulate and deal with all the stuff that’s coming at me. Help me recognise that this is what I am doing. Maybe you need to learn how to read my behaviour first, like hanging upside down in the chair (vestibular stims) and kicking my feet (propioceptive stims) and the attention on my toys (visual or tactile stims). You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.

4. Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me. First it will be my brother who stuck his tongue out at me. And then it will be you for restraining me from hitting my brother. Or myself for being in the way. Triggers triggers triggers. I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.

5. Don’t ask me questions. If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again. Ask me too soon and it will just be another trigger. I am dealing with my overload, with my own feelings of anger and guilt and frustration and sadness and pain, and there’s so much going on that there’s no room for words. It’s hard enough for me to even understand, LITERALLY understand, what you are saying. Formulating an answer is simply not going to happen. However, if you talk about it with me afterwards, that might be a really big help for me in learning how to understand emotions and how my mind works. I may sound resistant to questioning, but that’s also because I’m afraid of going into another emotional meltdown.

6. Don’t try to distract me. I’m not having a temper tantrum, I’m having a meltdown. Trying to get me to focus my attention on something else means I get even more input that’s getting on top of the input overload and I just can’t deal with that. Fewer triggers, not more. You can try getting me to hit a pillow instead of you, but the pillow isn’t triggering me so I might not listen to that. What’s better once I get that violent is bringing me to a GUARANTEED safe space (I emphasise guaranteed because it needs to be not just a space of your choosing, but a space where I can feel safe no matter what and where I won’t be forced out again). My safe space was the back of my mother’s wardrobe, between her clothes, because even if I had the door to my room closed, people still barged in. Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.

7. Yeah, it takes that long. Please give me time to process. I will come to you once I’m ready. Because I love and trust you, even if I don’t always show it in a way that you can recognise. Please don’t punish me for not understanding why things went wrong or for losing control. I’m punishing myself already. Trust me on that.

Anon wrote:  “I used to hum to myself for comfort when I was sick (about 7yrs) and my father used to threaten me into silence – it was his ignorance and fear, not malice… but I stopped humming.”

Autisticook wrote:  “It was NOT HAVING WORDS and SO MUCH FEELS and STOP TALKING I CAN’T MAKE SENSE OF THINGS and HELP ME NOTICE MY DESPAIR NOTICE MY NO WORDS HELP ME. And above all just stop stop stop stop stop.”

Ischemgeek wrote:  “Especially big for me was stop yelling at me so I can think and figure out what you want because I don’t even know what you want and why you’re screaming at me I just know you’re screaming and I can’t take it just stop.”

And in another comment wrote:  “For me, violence of the meltdown variety (as opposed to sibling bickering violence, which stopped around age 8) was never so much about getting my way and more about gettingaway, if that makes sense.”

MonkeyPliers wrote:  “I’d be concerned about any child developing the kind of anger towards her- or himself that I learned to have towards myself from not being understood and being accused of “putting on a display” when I couldn’t regulate myself.”

Related articles

51 Comments

Posted in Autism, Parenting, violence

Tagged , , , , , , , , , , ,

Justifying Actions

Posted on September 9, 2013 by | 20 comments

I just wrote an angry rant.  As I was getting set to publish it, someone tweeted me about something unrelated.  They wrote that in order for people, who may be feeling desperate, to hear what you (the universal/general you) have to say, there is a need for kindness, and it stopped me in my tracks.  Kindness…  In my fury I had forgotten all about kindness and I felt like a balloon that had just been popped. Pfssssst…  All that lovely anger that was protecting me from all those other feelings I have, oozed out.  Pffffffssssst.  And you know what I was left with?  Sadness.  Overwhelming sadness and something else.  Fear.  Tremendous fear.

Sadness and fear do not make me feel powerful.  Instead they make me feel vulnerable.  I don’t like feeling sad and vulnerable.  I want to feel powerful, but all of these things are illusions at best.  Just because I feel powerful does not make it so.  Just because I feel vulnerable does not mean I am.

Someone wrote on a public forum that they were heart-broken over a mother who tried to kill herself and her child.  They followed that thought with this, “she was given a burden she could not bear” and I felt like someone had kicked me in the solar plexus.  You see, I take those words personally.  They may as well have said that they believed that about one of my children.  Please, please, do not say a child, any child is a burden.  Even if you believe this to be true, do not say those words in public.  Do not.  This is what private support groups are for. This is why people see psychiatrists, psychologists, counselors, this is why we call close friends whom we love and trust and who we know will honor what we say in confidence and keep what we say confidential.  In moments of terrible pain all of us can and do say things that upon further reflection we wish we hadn’t.  We think things we do not really believe in moments of upset.  We may even act on these things that we think and say, these are the times we wish we’d said and done nothing.

Not every feeling must be acted upon.  Not every thought needs to be said out loud.  Please, when you say someone’s child is a burden and that it was too great to bear and that this was why they tried to kill that child, it places a stigma on all our children.  This kind of language terrifies me.  I am terrified someone who believes Autistic children are a burden will come into contact with my child and treat her accordingly.  Please if you believe Autistic children are a burden, if you feel their neurology makes them inferior, do not go into the field of autism.  Do not convince yourself that you will be able to help that person, you won’t.  Feeling sorry and pity will not help or make that person’s life better.  In addition, when we believe another person is a “burden” it is being suggested that there are situations when it is acceptable to not be held responsible for what we say and do.  It is being suggested that, to hurt someone we believe is a burden, or worse, take that person’s life, is a reasonable thing to do.  It’s not.  It’s not okay.  We cannot, in our desire for compassion, allow this to ever be okay.   It is not okay.

Finally, if you truly believe someone, whether it is your child, someone else’s child or just in general, is a burden, please talk about these feelings and thoughts with a professional or someone you trust who can help you work through these beliefs with compassion and care.  If you do not know where to turn or do not understand why this kind of thinking is problematic, email me privately so that I can try to better explain or can find someone who will be able to explain this in a way you can hear.  My email is:  emmashopeblog@gmail.com

20 Comments

Posted in Autism, fear, Parenting

Tagged , , , , , , , , ,

A Few Thoughts…

Posted on August 12, 2013 by | 38 comments

I haven’t written anything on this blog for an entire week, the longest I have gone without posting something since I began blogging over three years ago.  A combination of things kept me from my routine, the first being – Emma and I were away, traveling to a new place with food we do not usually eat, people, most of whom we did not know, sleeping on beds we weren’t use to.  Everything about our environment was different, but there was something else too.  Something I can’t completely explain because I haven’t figured it all out yet.  Something that was more than just a disruption to routine, something about identity and society and how the two intersect and influence each other, what that means and how that changes the way we live our lives.  These are all thoughts that are more like wisps of random words than fully formed structures I am able to describe.  I am in the midst of these words, loosely pieced together ideas; I am twirling among them, investigating, looking, feeling and trying to be still in my discomfort of not knowing or being able to define.

Em and I traveled to a place that was created, organized and for Autistic people.  I took Emma because I wanted her to experience being in a place where her neurology was in the majority.  I wanted her to meet others who are more like her than not.  Em has not commented on our time away other than to say she had fun.  I, however, have a great many thoughts and feelings about being in such a place.  And I suppose the thing I felt more than anything else was how much more alike we humans are no matter our specific neurology.  But there is always a danger in making such a statement.  I have been accused of “sugar-coating” autism.  I have been told my daughter must be “high functioning” because surely if she were like their child it would not be possible for me to have come to a place of not just acceptance, but celebration of all that makes her who she is.  Some people have written that by accepting I am giving up.  They equate acceptance with resignation and doing nothing.  Others have said that acceptance will not get my daughter and others like her the services needed, that the negative rhetoric is necessary.

People have written me that they want to hear about the hardship, the difficult times, the pain…  they wonder at my decision NOT to talk about that.  To all those who come to this blog hoping to hear about the gory details of parenting an Autistic child – better to move along, you aren’t going to find that here.  There are countless blogs that do that far better than I ever could, even if I wanted to.  I lived too many years of my life neck-deep in pain and all that was wrong with this planet and my life.  And by the way, I did that well before I had an Autistic child.  I am more than capable of seeing the world as a dark and miserable place.  I don’t need a great deal of encouragement to go there.  Perhaps one of the greatest gifts I have been given is that I was once in such tremendous pain and know how easy it is to live in a place that feeds off that misery.  I have no desire to return to that mindset.

I am interested in hope.  I am interested in both being the recipient of and the giver of hope.   Hope gives me energy.  I feel invigorated by it.  When my daughter types something I have never heard her communicate to me before I am filled with joy. When she says something I have never heard her say, I am filled with happiness.  When she performs a new song, in Greek, no less, I feel proud, I feel excitement, I feel the beauty of her voice fill my soul, I feel bliss.  When my daughter reads something and makes a comment about what she’s just read I am euphoric.  When she tries something new, I am cheering her on.  None of this erases the moments of pain.  None of this means everything is simple or easy or that there are never moments of sadness or difficulty.

I will and do write about my own challenges, not because of my children, but because of who I am.  Placing blame on others for my issues and challenges is not something that helps me change and it definitely does not make me feel any degree of happiness.  My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.

“Type three colors,” I said this morning.

“…Violet, slate blue and red,”  Emma typed.

I’m in awe.

Emma’s ever-changing “string”

Em's String

38 Comments

Posted in Autism, Blogging, communication

Tagged , , , , , , , , ,

Seeing But Unable to Believe

Posted on August 1, 2013 by | 62 comments

When some people hear that my daughter is Autistic they see a beautiful blonde haired girl with no noticeable physical impairments.  They see a pre-teen who has terrific eye contact.  They see someone who is happy and playful and who laughs often and with abandon.  They see someone who loves loud music, a good party and will grab hold of a microphone if given the opportunity.  They see someone who obviously loves to perform in front of an audience.  She doesn’t fit their concept of autism so they assume the diagnosis must be wrong.  They say things like,  “But I never would have known if you hadn’t said something.”

When it becomes clear that she cannot carry on a conversation with them, but demonstrates her intelligence by typing something with lots of insights and wisdom, they see a doting mother who is supporting her daughter’s arm or holding on to the other end of a pole and they assume it is all a manipulation.  They decide it is me who is writing these things, “putting words into her mouth”.  After all my daughter cannot carry on a conversation, how could she possibly be writing such beautiful words?  Later, when I am no longer present they might say, “Poor thing, she’s deluding herself about her daughter, of course she would, how could she not?  It would be giving up all hope to do otherwise.”

“In our field, assumptions about labeled people are so deeply rooted that we tend to think they are facts.  They are not – they are only shared beliefs.” ~ Autism: Sensory-Movement Differences and Diversity by Martha R. Leary and Anne M. Donnellan

I explain that my daughter is typing these things, but needs support to do so, without that support, which is in the form of resistance, she will impulsively revert to her favorite scripts, and they think to themselves – that doesn’t make sense.  How is that possible?  She can type independently now, why don’t they just leave her alone and let her type what she wants?  If she can’t type these things independently, it must not be coming from her.  Her mom must be writing those things for her daughter.

I then talk about how my daughter is doing math, multiplication and division (in her head) without any formal training and they think – well, that simply isn’t  possible.  That can’t be.  They look to see if my daughter is somehow being manipulated, prompted, even though she is not being touched.  When I state that my daughter is reading faster than I can, they wonder – but how can she really know that for sure?  When Emma then obviously passes reading comprehension multiple choice tests, they think – well, but it’s just a coincidence, after all it IS multiple choice, that’s much easier than if she had to write an essay.  Those who do believe, assume she must be the exception.  They say things like, “But my child/the child I work with can’t possibly do that. You’re so lucky.  Your daughter is very, very special.”  They place my child into a little file in their mind.  A file entitled –  anomaly.

“When you have enough exceptions you have to start questioning the legitimacy of the rule, the assumptions, and the paradigm.” ~ Speechless by Rosemary Crossley.

I have interviewed  a great many non-speaking Autistic people and published our conversations here and on the Huffington Post.  I have an entire page on this blog devoted to Resources, the first list is of all the blogs and writings of non-speaking Autistics that I know of, but there are a great many more that I do not know about.  Even so, people will write about how those non-speakers didn’t really write their own words or, conversely, they say –  isn’t it wonderful that these individuals are so amazing and an inspiration, but they are exceptional, they are not like my non-speaking child, or the children I teach, or the children I work with or…  Perhaps they are right, but what if they are wrong?

I would rather have my daughter surrounded by people who believe her capable than around those who do not.

Ariane Zurcher, Amy Sequenzia and Ibby Grace at the ICI Conference ~ A conference dedicated to accommodating those who do not speak

Me, Amy & Ib

Related articles

62 Comments

Posted in Autism, Parenting, presume competence

Tagged , , , , , , , ,