Tag Archives: Parenting

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

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Posted in Autism, Parenting, presume competence

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Blogging

Posted on July 29, 2013 by | 34 comments

It’s always interesting to get attacked by someone you’ve never met.  All the more so when they write about how “narcissistic” I am, while talking about themselves and bolstering themselves up in comparison.  They use this blog, link to it, as a spring-board to talk about themselves.  They talk about how they are such a “bad autism mom” because they do not do whatever it is they perceive me to be doing, while at the same time congratulating themselves.  All of this they say with a liberal dose of sarcasm and “eye rolling”.  How easy it is to criticize everyone else.  How easy it is to sit on one’s little self-made throne of superiority, picking apart other people’s lives, while avoiding looking at one’s own.  It’s so much more fun to sit in judgment of everyone else.

There are so many blogs out there, written by all kinds of people about all kinds of things.  Why choose to talk about the blogs you don’t like?  Why not talk about the ones you do.  This blog isn’t for everyone.  If you don’t like what I write about, you don’t like what I say, you don’t agree, then comment, start a conversation, have the guts to say something here, directly to me, or don’t, and go find another of the tens of thousands of blogs out there.  But devote an entire post to all that I’ve written that pisses you off while calling me names, meanwhile using the cloak of anonymity?  Seriously?  Why do that?

I always find it interesting that the meanest comments (and by “mean” I do not mean those who disagree, I mean, nasty, sarcastic and those who resort to name calling) almost always come from people who do not use their real names.  I understand many people choose to use other names to protect themselves and those they write about, I understand that many do so for good and well thought out reasons, but there are others who do so because they say awful things about other people, things they would not have the courage to say to the person’s face while hiding behind their safety net of anonymity.

I have a lot of ambivalence about this blog.  I always have.  I love that my daughter says she’d like to write things to post on here.  I look forward to the day when this blog becomes hers, or we decide to shut it down and she begins her own, if that’s what she would prefer.  I do not post photos of her without her permission.  I do not quote her without her permission.  I try to write honestly.  I write about what I know.  I write about what I think about.  I write about the mistakes I’ve made and continue to make.  I try to write with a certain degree of self-reflection.  I write about what I’m learning.  I’ve written about my past, my childhood, addiction, career, passions.  I try to keep the focus on “my side of the street.”  Often that’s not easy.  It would be far easier to write about everyone else, a running critique of everyone else’s poor behavior, but doing that is not the person I want to be.  I have worked hard these last two decades of my life to be and behave differently.  My default mode of being in this world does not serve me or others.  Being self-involved, a victim, blaming my bad behavior on others, doesn’t help me.  What do I learn from that? How is any of that going to improve anything?  I can’t control other people.  The only thing I have any control over is my response and my actions.  I try hard to not get into judging and condemning others.  I try.  I’m not perfect.

I do what I can to live a life with purpose.  Some people are going to disagree, some people won’t like the way I write.  Some people will decide they “know” me and don’t like what they think they know.  They will find fault.  That’s okay.  But don’t come here and use this blog as a spring-board to talk about how superior you are because you “don’t do” what I am doing.  Don’t twist my words around, take them out of context to bolster yourself up.  Go get some help.  There are lots of people who specialize in helping people with issues of self-esteem.  You want to have more self-confidence?  You want to deal with your insecurities?  Trust me bashing, judging, criticizing others isn’t going to give you what you’re looking for.  You want to complain about me and what I seem to represent to you, go for it.  But have the guts to do it to my face or at least do it here, while using your real name.  Don’t link to this blog from yours.  I don’t need nor do I want the traffic that is generated from your words.

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Posted in Blogging, controversy, Parenting

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The Snowball Effect

Posted on July 26, 2013 by | 20 comments

The snowball effect began with, what I now think of as, a leap of faith.  Richard and I leapt into that great abyss better known as the unknown.  It turns out this was actually not true, it would be more accurate to say we chose to neither believe nor disbelieve, but instead began to examine all we were being told.  Perhaps it’s better to say that instead of leaping into we jumped out of.  From there it was more of a hop to begin presuming competence.  However, as a commenter on this blog said, “presuming competence isn’t enough.” And knowing what we now know, I have to agree.  It’s the starting point.  It’s like that initial leaping off point, it’s just the beginning.

At the moment we are experiencing something akin to being in free fall.  It’s the feeling of discovery, limitlessness, surprise, and pure ecstasy that comes with being present without expectation or preconceived ideas about what should or will happen.  Our perspective continues to change as we move along.  Like any great adventure, the path is at times rocky, but the triumphs are exquisite.  As we move deeper into this process it becomes easier and more familiar to be solidly in the discomfort of the unknown.  There is bliss in that.  True bliss.

Last fall I wrote a post about how I was worried Emma was not comprehending a story that had been sent home in her back pack from school.  It was a simple story, perhaps 1st grade level reading with some questions that she seemed unable to answer.  In the post I write how I am trying to find ways to help her reading comprehension.  I talk about presuming competence.  What I am struck by now is not Emma’s level of supposed incomprehension, but by my own.  I reread all the comments just now and am amazed, amazed that though I thought I was presuming competence, I was only able to go so far with my presumptions and, as it turns out, wasn’t going far enough.  I could only presume as much as my limited thinking would allow me.  The idea that she was not only comprehending this story, but was so far beyond it, was not something I was capable of fully understanding, let alone considering.  I was much more stuck, as it turns out, than my daughter was.

Now jump forward to yesterday afternoon, almost nine months after I wrote the post I refer to in the above paragraph.  Emma chose to talk about adjectives.  We watched the BrainPop movie about adjectives and then she took the quiz.  I copied what Rosie had done, asked her to read the questions silently to herself while using a laminated card to direct her visually and then quickly guided her to read each of the four multiple choice answers.  She only hesitated once, on a question about a possessive adjective, but otherwise breezed through the quiz with 90% accuracy.  Not only was Emma reading faster than I was able to, but she was accurately answering the questions faster than I could read them, let alone answer them.

The snowball effect:  “The basic workings of a literal snowball effect can be illustrated by taking one’s average baseball-sized snowball and dropping it down the side of a snowy hill. As it descends it gathers more snow and whatever leaves, sticks, etc. are in its way. The snowball accumulates not only size, but speed.” ~ From the Urban Dictionary

Self Portrait

photo

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Posted in Autism, Parenting, presume competence

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Emma’s Story

Posted on July 23, 2013 by | 51 comments

Emma told me I could post her story on here this morning.  This is a story she wrote yesterday with Rosie (Rosemary Crossley).  Rosie developed a technique more than thirty years ago to help people with a variety of issues, specifically those that make speaking difficult or impossible .  Em held onto a tube with one hand while Rosie held the other end as Emma typed.  Rosie began yesterday’s session by asking Emma to write a story that began with either, “once upon a time” or “one day.”  I was standing near Emma, with Richard, Joe and Em’s teacher, Katie, all watching as she typed the following.

“One day there was a boy called george. He had been in afight can’t tell you how he got into the fight but he was bruised all over.  He fought a lot and his teacher was very angry.  The next day he was all purple and his mother said you can’t go to school looking like that.  The very clever boy covered himself in flower and his teacher thought he was sick and sent him home.  The end.” 

Not sure I can actually continue writing here…  but I’m going to try… *Breathe*

I have read this story more than a dozen times already.  I know I’m totally biased, but I’m just going to say it – what an incredible story!  There are so many layers to it.  This story that Emma wrote with great concentration, with little pause is the first story she’s ever written.  She was focused and when asked about the word “flower” she verbally said “powder” in explanation.  Rosie explained that flower/flour are words that sound alike but are different in meaning.  Rosie explained that the powder kind is spelled “flour.”

But there’s more…  A little later Rosie brought out a math app called Math Magic where Emma proceeded to zip through addition, subtraction, multiplication and division.  None of this is particularly noteworthy, except that Emma has never been formerly taught division.  She was choosing the correct answers from a field of four.  A sample equation is:  “56 ÷ 8” and the multiple choices available were: 2, 9, 7, 6.  Emma chose the correct answers independently.    Allow me to say that again.  Division.  Emma chose the answers independently.

It was at this point that I felt so many things all at once it was almost impossible to speak.  But more than anything I kept thinking about how we continue to underestimate our daughter.  I had no idea she could do division.  Not only can she do division, she can do it quickly.  There’s another app Rosie recommended – Brain Pop and Brain Pop Jr. which Emma also did as we watched.  Not only did she listen to the short lesson, but then read all the questions silently, read the multiple choice answers and chose the correct answers.  It seems verbal speech is tricky, particularly when she is expected to answer questions verbally.  When asked to read silently and then identify the correct written statement by pointing to it, Emma did beautifully… about Ellis Island, no less!  The only interaction Rosie provided with both the math and Brain Bop was to use a laminated card that she silently moved across the words as Emma read and she did not allow Emma to point to any answer until she’d finished reading all the choices.

I cannot imagine how awful it must be to be so capable and yet treated as though you were not.  I imagine it must feel like being “bruised all over.” I imagine it must feel like you “fought a lot”.  My wish for my daughter is that she may continue to do all that she is doing, while we provide her with every opportunity to flourish and continue to show the world how very “clever” she is.  The only limitations are the ones we provide.

I am incredibly grateful to all who believe in her, all who have helped and who continue to help us so that we can be better parents to our daughter.  The list continues to grow…

Rosemary Crossley

Rosemary Crossley

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Posted in Autism, facilitated communication, supported typing

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The Teen Behind the Blog

Posted on July 22, 2013 by | 9 comments

There’s a blog called, TeenTyper, written by someone who describes himself as, “an autistic teenage awesome boy.”  He started his blog two years ago when he was 14 years old.  On a recent post he wrote, “the feeling is bold saturated thimbles of strength.”  Em and I had the honor to meet the young man behind the blog while in Syracuse.  As he also lives in the same city as we do, we got together with him and his mom yesterday.   He is non-speaking, but types and so he and Em typed to each other for a little while and then I asked if it would be okay to talk to him about his blog.  He said it would.  I asked him, “Why did you start writing your blog?”

He typed, “i startd because my aggravation abt my spaz speaking.”

This is from his Subway Poem –

“Subway subculture asserting the stroll
I watch and try to look like another old soul…”

Later I asked him, “Is the blog a place where you want to tell people something specific or is it more a general way to communicate your thoughts, or something else?”

He typed, “neurotypical need to be more conscious abt mean stares and hearing my voice will help them understand who I am.”

From Let me say:

“Before you judge let me say
You need to try being me
Before you judge let me say
I feel awful when you overly stare at me
Before you judge let me say…”

We need to be aware of the harm we do to each other with our judgments and implied criticism.  We need to pause and take our time.  We need to give each other the benefit of our kindness, we need to slow down…  we need to talk less and feel more, we need to give one another the gift of acceptance, we need to stop with our projected fears, our desire for sameness, our impatience, our disregard for another’s humanity…  we need to embrace one another.

From Wasted Words:

“Words wasted on nonsense
Still
Define…”

I urge everyone to go over to TeenTyper and give it, and the “badass awesome” teen who writes it, some love and support!

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Posted in Autism, Autistic Blogs, Blogs By Autistics

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On Being Fallible

Posted on July 19, 2013 by | 45 comments

At the conference Em and I just returned from I was confronted by someone who told me I was being disrespectful of my daughter.  She actually went further and said I had spoken “inappropriately” to her.  Furthermore she said these things to me in front of a room filled with people, all of whom could hear her, because she was leading the presentation.  Yup.  It was one of those moments when you really wish the floor would arbitrarily open up and allow you to slide into its blissful dark, abyss.  It was also the final day of the conference and I was feeling pretty fragile and emotional.  My ability to filter was at an all time low, my ability to think logically was pretty much non-existent, and finally, my ability to hear her and reflect on her words without defensiveness was hovering in the red-high-alert-grab-your-oxygen-mask-we’re-going-down-save-yourself range.  It was one of those moments you wish had never happened, but more to the point you wish you’d never said the thing that was being criticized so publicly.  It was a moment of intense shame.  And my first thought was – defend, defend, defend!

But remember, I was in overwhelm before her words had found their target and I didn’t feel strong or able to fight back, nor did I feel I was in a position to fight back, after all not only was she leading the workshop, she was someone I have a massive amount of respect and admiration for.  This is someone I had looked forward to seeing ever since I was told we would be in her workshop.  This was the person I’d read about and anticipated meeting with eager excitement.  Meanwhile there my daughter was, typing out “I’m happy.”  To which she said, “I’m guessing you’re happy when your mom gets called out on her behavior.” Ouch. Ouch.  Ouch.  Let’s just get a knife while we’re at it and see some real blood.

But here’s the thing…  she had a point.  The details aren’t relevant, what is, though, is that if I am speaking to my Autistic child in a way that I wouldn’t speak to my non autistic child, then that’s clearly a problem.  If I am speaking to my Autistic child in a way that I would speak to my non autistic child, (as was the case in this instance) and someone who has spent their life working with children and advocating for them calls me out on what I’ve just said, I need to, at the very least, consider their words and reflect on my own.  I have never claimed to be an ideal parent.  Years of parenting has taught me that sometimes I get it right, often I get it wrong, but hopefully I will always be willing to look honestly at my actions and behavior without defensiveness, but with a desire to learn and be the best parent I can be one day at a time.

So if someone says something that really hurts, when their words pierce, I’m old enough and smart enough to spend some time thinking about my reaction and at least try to see where the other person is coming from.  Sometimes people say things without the necessary information, sometimes people say things that hurt because they are operating from a set of false assumptions, and sometimes hurtful things are hurtful because there is truth to their words.  I’ve spent the last 36 hours trying to figure out which of these was true or if it was a combination of things, but more importantly, I have reflected on whether the sentence I said to my child was the best way I could have spoken to her and if it wasn’t, what would have been.

Even in my state of overwhelm, I was able to whisper to Em right away, “I’m so sorry, Emmy.”  And I was.  But I was also angry with this other person.  I still felt the need to defend.  I still wanted to “save face” in front of this room filled with people.  But instead I went silent and tried not to cry.  Shame.  Shame is brutal and though all of us have probably felt first hand what it feels like, we also probably, inadvertently have shamed others without realizing it or even meaning to.  I know I have.  The above example is a case in point.  Without meaning to – I had shamed my daughter by questioning out loud what she’d just typed.  I get that.  I have enough humility to know that I make tons of mistakes… every day…  but I also know the beat up job that is my default reaction to making a mistake is not a healthy one.  I’m working toward more measured and thoughtful responses.

One of the things I love about Pascal Cheng, the first person to help me begin supporting Emma with her typing was that when I did something that he saw was unhelpful, he would/will say, “May I give you some feedback?”  He then says things like, “Instead of saying, ‘No!’ ask her if that’s the word she meant to type.”  He has taught me to try and give her just the right amount of resistance (to make sure that she doesn’t go to favorite scripts) combined with the emotional support and encouragement she needs to continue typing with me. Pascal models the same respectful interaction with everyone he comes into contact with.  When I grow up I want to be like Pascal.

But in the meantime, I am looking at my words and seeing how important it is for me to be aware and conscious and respectful of my daughter.  Perhaps the better question I must remember to ask myself is not – would I speak to my son this way, but, would I want someone else to speak to me this way?  The beauty of life is that  we can always improve if we want to.  And I desperately want to.  My goal isn’t to be “right” or never to do anything “wrong” or to make someone else “wrong” when they confront me, my goal is to have the willingness to look honestly at my behavior and the things I say and do, face my mistakes and learn from them.  That’s my goal for this short life I have been given.

Me and Em at the ICI Conference
Me & Em

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Posted in Autism, ICI Conference, Parenting

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Being the Adult I Want my Children to Become

Posted on July 12, 2013 by | 20 comments

“Are you the adult you want your child to grow up to be?” ~ Brené Brown from her book Daring Greatly.

Are we being honest here?

Because if we’re being honest, then – no, no I’m not.

I could hit the publish button right now and call this a post, but I’ve got a couple of things to add here.

From Daring Greatly – “…we should strive to raise children who:

  • Engage with the world from a place of worthiness
  • Embrace their vulnerabilities and imperfections
  • Feel a deep sense of love and compassion for themselves and others
  • Value hard work, perseverance, and respect
  • Carry a sense of authenticity and belonging with them, rather than searching for it in external places
  • Have the courage to be imperfect, vulnerable, and creative
  • Don’t fear feeling ashamed or unlovable if they are different or if they are struggling
  • Move through our rapidly changing world with courage and a resilient spirit

Now read every one of these things as a directive for yourself, like this:  Embrace your vulnerabilities and imperfections.  Feel a deep sense of love and compassion for yourself and others.  Carry a sense of authenticity and belonging with you, rather than searching for it in external places.  Don’t fear feeling ashamed or unlovable if you are different or if you are struggling.

I am becoming increasingly aware of how often my critical responses to my children are often reflections of my deepest insecurities. I don’t want them to make the same mistakes I’ve made.  I think I can control their future by making sure they understand just how serious all of this is.  I admonish my son for forgetting to feed the cat, while remembering the time my parents left me in charge when I was fifteen, two years older than my son is now, and how I forgot to feed the horses and had nightmares for years afterward.  I try to remember to phrase my sentences as – You forgot to feed the cat, what might help you remember?  Instead of my knee jerk response of “Did you forget to feed the cat again?  Why can’t you ever remember to do that?”  Because, wow, there’s a world of difference between the two…  and yes, I’ve said both.  The first is when I’m being the adult I want my children to grow up to be and the second is the adult I hope beyond measure they never become.

I worry about what a neighbor is thinking when he asks how we are and my daughter responds with, “Yeah, baby Teddy can’t go on the pogo stick.  Baby Teddy might fall and hurt his head.  Baby Teddy will cry and have to go to hospital…” and then describes how the doctors are going to have to put a breathing mask on baby Teddy.  I stand there feeling increasingly uncomfortable, because I care what our friendly neighbor thinks or because I’m afraid of what this might say about me and the things we put her through years ago?  And even as I am writing this, I marvel at how she really was answering his question, far more honestly than I ever would dare.

The truth is my children are closer to the adult I’d like to be, but am not yet.  I figure since my husband is hard at work figuring out the whole anti-aging thing, I’ve got at least as many decades ahead of me as I’ve got behind me to work on this goal.  I’m grateful for that, really.  I’m going to need every year I’ve got left.

“Have the courage to be imperfect, vulnerable, and creative”

Yup, check.

“Move through our rapidly changing world with courage and a resilient spirit”

Yup, check.   I got this.

Reflections in a puddle

Reflections in a puddle

 

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Posted in Autism, Parenting, shame

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We Are Like Your Child: The Blog

Posted on July 10, 2013 by | 27 comments

*To Emma’s Hope Book followers – This post was password protected so that those I quoted could read it first and give their approval before I published.  They have and now it is here for everyone to read!

We Are Like Your Child is a new blog created by a group of people, all of whom have been instrumental in helping me understand autism and what it means to be Autistic.  These are the people I think of as my mentors.  They have helped me more than I can describe.  They are a diverse group in every way, but one.   They all have lived their lives with the same neurology as my daughter.  They are Autistic.  These are the people I often reference when I talk about how our lives changed.  It is their voices, their lives, their stories that have changed mine.  To say I’m excited to introduce their collective blog to all of you, doesn’t really sum up what I’m feeling!  I am grateful.  I am incredibly grateful.

This is exactly the sort of blog I would have devoured, had it existed in 2004 the year Emma was diagnosed.  The year when everything was so terrifying.  The year I began, unsuccessfully, to look for adults who might give me insights into my child’s mind.  We Are Like Your Child is created by those adults.  I will be following eagerly and closely.  Posts so far have included such topics as time agnosia, how one person dealt with having meltdowns as a child, routines and what happens when they are disrupted, and life skills.

A number of the blog’s creators agreed to answer a few of my questions.  (Thank you everyone!)  What follows is a group interview representing the many voices and points of view of its creators.

What is “We Are Like Your Child”?

“We Are Like Your Child is a collective, community blog by disabled, mostly neurodivergent folks.  The name comes from the whole declaration of “You aren’t like my child!  You can X, Y, and Z!” that we hear all too often.  The thing is, my way of doing Z, Y, and X is vastly different from how most people do, because I have a profound inability to do Q, G, and -7 but am absolutely rockin at P, F, and pi or whatever.  So this is kind of a place to write about our self accommodating mechanisms, the workarounds we use to function in a world not even a little built for us.  It’s a collection of coping strategies.  It’s our difficulties.  It’s our strengths.  It’s a collection of awesome people talking about our unique problem solving. ”

“We are more like your children than you know… and while we are all different, we are a roadmap of sorts, a set of guideposts pointing to the many potential directions your child may end up journeying to in the course of their life.”

“There are difficulties and sometimes they are very difficult. I actually do talk about them on tinygracenotes fairly often but since it is in the context of relating to what someone else is asking, perhaps that does not stand out the way it needs to. In this blog, we want to have our stories show that things are sometimes difficult and sometimes very difficult, and yet we live lives.” ~ From the post Lost, Mistimed and Melty.

Why did all of you create this blog?

“The most common stories in the media about disability tend to be inspiration porn or people who have a disability but have never had any problems ever (a subset of inspiration porn) or are the tragedy, doom, gloom narrative.  We are presenting a bit more reality than that.  Reality is sticky and messy and complicated and beautiful and difficult and sparkly all at once.”

“We love your child.  What?  You say we do not know your child?  No, maybe not.  But your child is a member of our tribe, our neuro-tribe, our extended family of those who share similar types of brains and similar ways of being in this world and so we do love your child and we want to try to help the Hard Knocks in their School of Life fall a little softer than they did on us.”

” The number one most important thing to guide you in your journey of parenting an Autistic child is your child.  Listen to your child – really listen.  The number two most important piece of your map in the huge love you have for your child.  Feel that love, feed that love, let that love guide you toward doing the best for your child.  We want to be the third big resource for you.  We are the grown-ups who used to be your child.  We want to help your child.  We want to help you.  We created this place as a bridge between our world and yours where we can meet and conspire.  Our collective job is to make the world a better place for Autistics and , specifically, for the Autistics you know and love.  Let’s work together to make that a reality for all of us.”

Yay!  Who among us doesn’t want to work together to make this world a better place?  I do!  I do!  *Jumps up and down.

Ahem.  My next question:  Who do you want to reach?

“I’m hoping to reach other disabled folks, really.  But I am also hoping to provide a resource for people who know and love disabled kids.  If we’ve tried 8,000 things, none of which are “well don’t be autistic then” and had some success, then maybe that’ll mean some kid doesn’t have to reinvent the wheel.”

“We want to reach other adults who are looking for ways to be in this world that suit their needs better.  We have advice from our own experience.

“We want to reach those who love autistic adults and want to help make their lives better.  We can tell you what kind of help we appreciate and explain why help that is not very helpful is… not very helpful.

“We want to reach parents of Autistic children.  Your child’s diagnosis was not the end of the world!  It was the beginning of a new and beautiful life as a member of our tribe.  Your child is not a tragedy!  Your child is beautiful and we want to rejoice with you in the diagnosis that will help your child get their needs met in ways you never dreamed possible.

“We want to reach anyone who wants to know that the lived experience of autism can be difficult, yes, but can be indescribably beautiful as well. We want to reach anyone who is open to learning about Autistic people and how to accept us, how to live co-operatively with us, or even how to be a happier Autistic yourself.”

The guidelines for submissions can be found ‘here‘, but in addition to what a couple of the creators had to say, I just had to quote from their blog:  “So you think you want to submit to We Are Like Your Child? Great! We want to hear from a large number of people, about how you manage to exist in a world that isn’t made for you, and yet like yourself anyway.”

Who can submit?

“We do not take submissions from not disabled people.  Well, I mean, they can send them, the system won’t explode, but we only print submissions from disabled people.”

“We also don’t print submissions that amount to “I just decided to act normal yay me” or “woe unto me life is terrible bc disability.”  Those markets are pretty saturated.”

Do you encourage people to ask questions?

“Yes!  Please ask questions!  We have a facebook page and we also are all reading comments on the blog itself.”

A wonderful new blog has been born.  Let’s welcome it into the world!

The Blog:  We Are Like Your Child

The Facebook Page:  We Are Like Your Child

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Posted in Autism, Autistic Blogs, Blogs By Autistics

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Progress

Posted on July 9, 2013 by | 22 comments

It’s a little ironic that this blog began as a document of my daughter’s “progress” (which, at the time I defined as – becoming indistinguishable from her non autistic peers) and has evolved into a document of my progress and movement away from exactly that kind of thinking.  I don’t really have a problem admitting the mistakes I’ve made, which is probably a very good thing as I am not going to get to a point where I never make any.  But I do my best to learn from them.  I try hard not to beat myself up.  Sometimes I’m more successful at that than other times, but that too is a lesson I learn from.  I didn’t get to any of this on my own.  The progress I’ve made regarding autism, how I think about my daughter and because of that thinking, how I interact with her, is a result of the help I’ve been given.  Help given to me by those who are Autistic.

I would be dishonest if I didn’t admit to times I’ve felt confused, afraid, unsure of myself, and incredibly vulnerable more often than I’d like, but that’s progress too.  There was a time in my twenties and early thirties when I did pretty much anything not to admit I ever needed help, let alone asked for it.  Thankfully I’ve progressed.  So last night when Richard told me about running into one of Emma’s early intervention therapists and how it seemed she was surprised that Emma was not able to carry on a conversation with her, I felt a wave of something I couldn’t immediately identify.  First I cycled through thoughts of “I don’t want to hear your feelings on this,” to “I wish you hadn’t told me about this” to the overwhelming urge to stick my fingers in my ears and yell, “LALALALALALALALA I CAN’T HEAR YOU LALALALALALALALA!!!”

Yeah.  I know.  That would have been childish of me.  And by the way, I’m 52 years old.  You have no idea how much I wanted to do that.  *Shrugs, then smiles. 

Progress…

So after all that, after we got into a fight about something unrelated that I can no longer even remember what the topic was, I realized what I was feeling.  I felt the weight and force of my feelings.  Feelings I really prefer not to have or feel.  Ever.  Shame.  Feelings of shame.  Yup.  Shame.  Like a massive metal door closing in on me, I felt shame.  And then I felt shame for feeling shame.  Fade to black.

Because that’s how this works right?  We feel something and then instead of being able to sit with the feeling, work through it, we add to it by feeling shame for feeling the initial feeling of shame.  Who came up with this stuff?  If it wasn’t so damn painful it would be beautiful in its perfection!  As a friend of mine and I like to say, it’s a “pick your poison” situation.  Whichever way you go, it’s going to hurt.  So yeah, I chose to feel the initial shame and tried hard to be aware of my judgment and that really loud, obnoxious, critical voice that loves to shout at me given the slightest opportunity.  “Shame.  Feeling shame.  Lots of shame,” I said.  Meanwhile Richard had moved on to the New York Times Crossword puzzle and looked at me with confusion.

To be clear – This isn’t about my kid.  This has nothing to do with her, who she is, her neurology, what she did or didn’t say.  This has nothing to do with Richard running into one of her Early Intervention therapists or perceived expectations, either mine, his or the therapist’s.  This isn’t about autism.  This isn’t even about parenting.  This is about perfectionism.  This is about my shame for being an imperfect human being.  That’s what this is about.

Progress…

Reflection

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Posted in Autism, Parenting, Perfectionism

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Early Intervention

Posted on July 8, 2013 by | 32 comments

Last week I wrote a post,  Autism “Experts” about how I used to attribute any action or sentence uttered by my daughter as evidence that whatever therapy or treatment we were employing at the time was “working.”  It was my way of staving off the persistent fear that if we were not intimately involved in a constant barrage of therapies, she would make no progress or whatever progress she made would be less, than if we devoted every waking hour to constant involvement and interaction.  Suddenly every waking moment became a moment we must engage, interact, teach and push for more.

We were told about the human brain and the small window when the brain’s plasticity is at its most optimal for learning.  From the moment that diagnosis was handed to us, we felt we were in a race against time.  Any time we sat down to read the newspaper or took ten minutes in our daughter’s presence to relax and just be in each other’s company without “working” with her was reason for guilt and the feeling that time was slipping away from us.  The nagging worry, if only we did more than we already were, she would be better served, is one I remember well and can still feel the residual stress of.

I want to clarify a couple of things that perhaps were not entirely clear in last week’s post.  I do not believe an autism diagnosis means we sit and do nothing to help our children, but I believe there must be a balance.  What we did was detrimental to all involved and I do not encourage anyone to follow in our footsteps.  All our hard work, the round the clock therapy, (more than 40 hours a week) the training, the evenings and weekends spent taking over once the therapists had gone home, did not ensure our child’s brain was rewired.  She was not mainstreamed within a few years.

This idea, popularized by the book, Let me Hear Your Voice by Catherine Maurice was NOT our story.  I do NOT recommend that book, in fact I urge parents to avoid it.  It was the first one recommended to me by Emma’s ABA supervisor and it set us on a very painful road of discouragement and disappointment, but perhaps even more importantly and destructive, it put into play the belief that Emma’s neurology could and should be “fixed.” And it pushed us further away from any degree of acceptance and eventually embracing and yes, celebrating our daughter for the amazing, uniquely beautiful being that she is.

That early intervention is so often equated with ABA is worrisome to me.  I hope this is changing.  People suggest it is, but when my daughter was diagnosed it was a given.  It was ABA or nothing.  Agencies offered versions of ABA, but it was still ABA.  My child was not helped by ABA.  I would not have done it could I do it all over again.  I’ve written about ABA before ‘here‘ and ‘here‘.  I know many of you feel it has helped your child, many have written to me and described some version of ABA that bears no resemblance to the method used with my daughter.   Evidently ABA has, in some cases, changed.  The bottom line is this – Does it presume competence?  Does it respect the child as a human being?   Is this a method I would use on a child who was not Autistic?

What I would have done when my daughter was first diagnosed was OT.  I would have enrolled her in gymnastics, trapeze school, swimming and I would have introduced her to a stencil board and AAC (Augmentative and Alternative Communication) devices.  I would have begun using Proloquo2go and many of the terrific Grasshopper apps had we had iPads when Emma was diagnosed.  And I would have begun working with Soma Mukhopadhyay.  In an ideal world all of these things would be a given.  All of these things would fall under “early intervention.”  All of these things would be available to ALL families despite their level of income.  These are the things that have proven to help my daughter.  All children may not respond to the things she has responded to.  But in an ideal world “services” would include an evaluation determining what things would help and a plan would be made.

In last week’s post I questioned those who are not Autistic and have little or no contact outside of a professional setting to those who are and yet call themselves “experts.”  I was not referring to the many professionals who are intimately involved in the autism community (and by that I mean the community of people who are Autistic) who have dedicated themselves to helping our kids and us so that we can be, not only the best parents we can be, but also equipped with information that will help us help our children flourish.  There are a great many of you out there, and to you I am incredibly grateful.  To all those professionals in the field of autism who are not familiar with Autistic blogs, books or do not have have any Autistic people in your life who are friends and colleagues, please become familiar with Autistic people’s work so you can tell parents.  Many parent’s first contact with anyone involved with autism, outside of their child, will be a therapist.

Please make sure parents know there is a growing population of adults who share our child’s neurology.  Even if that means just giving us a list of blogs and books written by Autistic people.  Ideally there would be programs in place that employed Autistic people, just as social workers, therapists, parent liaisons are employed. Autistic people who are interested in interacting with new parents and their newly diagnosed children would become a part of “Early Intervention.”

Ideally we would live in a society where we did not segregate those who were more profoundly affected by physical impairments and do not speak, so that all of us came into daily contact with those whose neurology was similar to our child’s as well as those with an array of impairments.  Perhaps families with older kids who are farther along in the process would volunteer to reach out and be available to other families new to all of this.   The point is that we could help each other more than is being currently done.

No family should feel they are alone, or feel the fear we felt or the terror and worry that dogged us every waking moment of those first years after my daughter’s diagnosis.  Years we spent in a state of almost constant panic that we should be doing more, that if we didn’t we were losing time, that our daughter’s life depended on it and that anything less meant we were failing her.

No one, who is given a diagnosis of autism, should feel they are alone.  None should feel less than or believe they are damaged or broken.  No child should feel ostracized or that the way they process and view the world is “wrong” or “bad.”  None should feel that because they are Autistic, they need to hide or feel abandoned by society. No one should be made to feel ashamed for the way they were born.  No one.  This is what I want to see change.  This is why I keep writing.  All of us can work together to create a world that embraces one another and encourages, rather than condemns.  Each of us can play a small part in making this happen, by increasing our awareness, by accepting difference, by working together.

**Em

32 Comments

Posted in Autism, Parenting, presume competence

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Autism “Experts”

Posted on July 5, 2013 by | 57 comments

Yesterday Emma asked Richard a question.  It was a question she’d never asked before.  It was a question that made us both inwardly gasp and later discuss at length.  It was one of those things that was noteworthy and made us both rejoice.  It was an example of progress, not just Emma’s, but as I’ll explain, our’s too.  Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t.  As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain.  Emma ran into our bedroom and asked, “What happened Daddy?”

Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment.  We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question.  We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions.  We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference.  As though our daughter would otherwise stagnate without our constant tinkering.  As though she would not make any “progress” without our various interventions.  As though autism meant complete stagnation and no movement of any kind.

Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter.  And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!

No one told us this seemingly obvious fact when Em was first diagnosed.  No one told us this, probably because no one thought it necessary to.  Except that in my case anyway, it was necessary.  It was more than necessary.  It was required.  Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.”  It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.

“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~  Lynn Koegel and Claire LaZebnik

It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.”  It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea.  I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post.  It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying.  Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting?  The very people they say they are experts on?  Don’t you find that odd?

Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting?  Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things?  Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws?  Any of this sound vaguely familiar?

“What happened, Daddy?”

Em dressed as a pink poodle ~ 2007

Em- poodle

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Posted in Autism, diagnosis, Parenting

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A Recipe For Living a Good Life

Posted on July 3, 2013 by | 55 comments

Last night Richard and I had one of our conversations.  It’s the conversation that starts with, “If only we’d known what we know now…”  The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…”  It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…”   And then the other joins in with, “Literally.  We would have literally done everything differently!”

One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now.  How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic.  How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror.  How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…”  “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!”  “You should try…”

I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…

What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”

What we were told about autism was WRONG.  Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true.  Having an Autistic child does not mean the entire family will be dragged down.  No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family.  Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.

We have been told all kinds of things about our daughter by non autistic people.  Not one of their predictions has come true.  NOT ONE!  Read that again.  Nothing we were told would happen, actually has!   Think about that.  Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now.  But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact.  If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally.  We would have laughed and walked away.

We would not have hired the agency who provided us with round the clock therapists.  We would not have shuttled Emma from one doctor to the next.  We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass.  We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology.   All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much.  The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.

So here’s the truth about my Autistic child:

She is a human being with desires, wants, needs, emotions and feelings, just like any other child.  If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent.  If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes;  I will have led a good life.

Emma and Nic ~ 2003

Em & Nic - 2003

55 Comments

Posted in Autism, fear, Parenting

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Shame, Addiction & Autism

Posted on July 2, 2013 by | 9 comments

“We all have shame.  We all have good and bad, dark and light, inside of us.  But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable.  In order to be vulnerable, we need to develop resilience to shame.” ~ Daring Greatly by Brené Brown

I’ve written about shame before.  A couple of commenters on my last post about shame told me to watch Brené Brown’s TED talks on vulnerability and shame, which I did.  B. Brown also has several books, Daring Greatly, is the one I’m currently reading, where she writes, “A sense of worthiness inspires us to be vulnerable, share openly, and persevere.  Shame keeps us small, resentful, and afraid.”

Shame is something I am intimate with.  I don’t know many addicts who aren’t.  I’ve written about addiction and specifically having an eating disorder ‘here‘, ‘here‘ and ‘here‘.  The self-betrayal implicit in addictive behavior exacerbates the pre-existing shame, creating depression and self-loathing.  Attempts to alleviate those feelings with addictive behavior only fuels them.  Shame heaped upon more shame is not a recipe for happiness or success.  Ignoring shame, trying to bury it, and trying harder to not feel it, doesn’t work either.

There have been a number of studies suggesting a link between addictive behavior and autism.  I don’t find this surprising given how feelings of alienation, isolation and fractured self-worth all contribute to wanting to seek refuge and escape. Except the thing we are trying to escape from is often ourselves.  Many of us have internalized our shame, particularly those of us who tend toward perfectionism.  Add to this obsessive tendencies, a desire to be loved, wanting to fit in, believing we are “less than” and addiction can feel like a perfect fit and the only way we can survive in a hostile, unaccepting world.

Oddly, we, as a society, tend to attribute laziness and a lack of will power as the reason people eat too much, drink too much or spend more money than they make.  Similarly, people seem to think autism is a choice or at least the behaviors associated with autism are.  These people apparently believe Autistic people can  “lose” their “autism” if they can just be trained to hide their “problem” behaviors or the things they do that make them obviously Autistic.  Many Autistic people talk about being scolded and punished when they were unable to produce the results expected of them when told they needed to “try harder.”  Trying harder will usually make the person feel more terrible about themselves.

I worry about a culture that is conditioned to believe we must ‘train’ our Autistic children to behave in ways that most cannot, or cannot without a massive cost to their self-esteem.  I worry about “autism treatments” and “therapies” whose underlying message is that our children are not okay.  I worry about what our children are internalizing.  I worry about addiction, depression, suicidal ideation, and how those things get set in motion at a very young age from feeling we are “bad,” not worthy and less than. I worry that because many do not understand autism is a neurological wiring, or do not take into account the experience so many Autistic people are describing, we are raising fearful children, filled with shame for who they are as human beings.  Instead of helping our children flourish, encouraging them to be all they can be, we are trying to make them into something they cannot be.

I love this photo of Emma because it captures her in all her Emma-ness!

Emma - 2002

9 Comments

Posted in Autism, Parenting, shame

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A Radical Notion

Posted on June 26, 2013 by | 29 comments

As I fantasize about a world in which autism is not consider a “bad” thing, but instead is seen as yet another type of neurology with its pluses and minuses, I continue to rewrite the “ideal introduction to autism” with the hope that one day this may actually be a parent’s experience.  I can’t imagine what that would be like, but I know for a fact, it would be a hell of a lot better than the very real, very upsetting, confusing and painful introduction to autism that I was given almost ten years ago.

First off, the literature regarding autism…  more and more there are books and blogs (!) written by Autistic people introducing the idea of autism as another kind of neurology with both innate challenges and wonders.  I’ve listed many of them on the Resources page on this blog.  As there were no blogs (written by Autistic people) that I knew of in the fall of 2004 I went to Barnes & Noble and bought pretty much every single book written on Autism.  Some would say that was my first mistake, as I was greeted with nothing but gloom and doom.  Other than Donna Williams and Temple Grandin, all the books were written by non autistic people about the dire, horrors of autism and what that meant for your child. (And none of it was good.)  Autism was most definitely not something to celebrate.

The idea that autism could be seen as anything but terrible was not even a radical notion, it was a thought that hadn’t made it into the public sphere.  When Emma was diagnosed the big names associated with autism were Andrew Wakefield, Jenny McCarthy and Bernard Rimland.  It was impossible to read anything about autism without those three names coming up.  Parents new to all of this, fumbled around trying to make sense of the various thoughts about cause, was it really an epidemic and how to best serve our children who were said to have been snatched from our protective arms.  I’ve written about the depth of my fear during those first few months that turned quickly into years in numerous posts on this blog.

My fantasy is nothing short of radical, but perhaps one day it will not be seen as such, but instead, will be commonplace.  My fantasy introduction to autism begins with the evaluation.  At least one of the therapists who came to our home in September of 2004 would have been Autistic.  Once it was thought my daughter might occupy a place on the Autism spectrum, more Autistic therapists, social workers and psychologists would have come to conduct the evaluation and talk to us.  This, then, would have been our introduction to autism…  meeting actual Autistic people, who are able to articulate what the challenges are and what the joys are!  People who could offer a balanced view of a neurology that I would be able to identify with and see there was overlap with my own.  People who would gently encourage me to review my own neurology and see that my daughter’s experience and processing of the world, while different from mine, has many similarities.  People who could help me so that I was in a better position to be the mother my daughter needed me to be.

After the evaluation and diagnosis had been made, we would then be given support in finding at least a few Autistic people who were in the profession of working with families with Autistic children.  In my fantasy, Autistic people would be among those creating schools, designing curriculums, teaching academics, conducting seminars for us, the parents of Autistic children, to attend so that we might better help our kids.  It seems to me a radical shift in all aspects of autism, what is said about what it is to be Autistic and what is being told to those who are non autistic, needs to occur.  My dream team would include Autistic and non autistic alike, but it would be a blend of those who presume my child competent, who treat my child with respect, who are interested in my child’s well being and want to work towards her strengths, encouraging her to be all she can be and cheering her on.  photo

29 Comments

Posted in Autism, Autistic Role Models, Parenting

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Trauma & Autism

Posted on June 25, 2013 by | 60 comments

Studies confirm that people who are Autistic often respond to stimuli more intensely than those who are not.  Hypo and hyper sensitivities are often discussed when it comes to vision, taste, hearing, smell and touch in Autistic people.  Often there is a mixture of both hyper and hypo sensitivities in any one person.  (I use these terms because we have a lack of good words to describe these things.  Both hyper and hypo sensitivities are subjective and are used in comparison to non autistic people, which is problematic in and of itself, but for the sake of this post, it is the best language I have.)  What happens to a person who experiences the world more intensely than the majority of people, particularly when confronted with frightening situations, anger, loud noises, etc?

“Recent studies have confirmed that children with autism have very active Amygdalas; the center of the brain that stores traumatic events.” ~ Traumatizing Events and Autism

When Emma was just two, we went to visit my mother, the proud owner of an adorable German Shepherd puppy.  Emma had no fear of dogs, but during that visit, the puppy playfully chased Emma, nipping at her ankles and Emma began to scream in terror.  By the time I was able to rescue her, hoisting her up in the air and away from the puppy’s sharp little teeth, the damage had been done.  To this day, Emma is frightened of dogs and upon seeing one that gets too close, she will cry, “Mommy pick me up!”  Despite the fact that Emma is now much older, the trauma is real and intensely felt.  For years I couldn’t understand how something so (seemingly) benign could cause her such incredible, and to me anyway, over-the-top terror.  I continued to believe this was a fear she would “outgrow” and that it was only a matter of time before she did so.  But so far, her fear, while not as extreme as it once was, is very much intact.

I am on a family picnic.  My parents pull out a french baguette, an imported pâté, a coveted gift from my father’s sister who lives in Paris, and some Swiss chocolate.  I am hungry and excited as pâté and chocolate are two of my favorite things to eat.  On the way home I begin to feel sick.  By the time we return home, I am vomiting and have the flu, but associate the feeling of nausea with the pâté.   It is almost two decades before I can stand the smell of pâté, let alone taste it without gagging.

These are both relatively benign examples of sensory issues intersecting with memory and causing longer term associations, but what about intense trauma such as physical and emotional traumas?  What about the time when the ABA therapist locked Emma, who was only three years old, in her room for 30 minutes, instructing me to stay out or he would pull all our services, while she screamed and begged to be let out?  I know how traumatized I was and continue to be because of those 30 minutes, what about Emma’s experience?  Did this cause untold damage?  Did Emma experience the degree of trauma that I did?  Is her experience even more profound?  What about how she experienced her own mother not saving her from such a person?  How has she integrated these events into her life experience?  Is it felt as the ultimate betrayal?  How will it manifest in the future?

These are the things I think about.  Not because I am intent on beating myself up, but because these are things that happened and I don’t think any of us are served by NOT talking about them.  These are the kinds of dilemmas many parents have experienced.  These are the questions so many of us have. Questions that are, as yet, unanswered.  We have to ask ourselves when we are considering a methodology and those who will come into contact with our children, are they going to be respectful and kind?  Does this methodology presume competence, is it respectful of my child?  Will the person be patient? Will they treat our children as inferior because they see autism as an inferior neurology and one that needs to be “trained” away?

“What does trauma do to the brain?

“Severe or repeated trauma can re-route emergency systems that are meant to be used only occasionally, and leaves them active, like a switch stuck in the “on” position. This can shrink or damage the part of the brain that thinks and plans, and potentially damages the brain’s ability to feel love and safety in the presence of others.

“To deal with this pain and stress, the individual may become more rigid and inflexible in his or her thinking and develop tunnel vision and selective listening. Over time to compensate for the damage done to the short term memory and ability to sequence by continued exposure to our fight or flight response, or allostasis, the individual may develop rituals, become rigid and controlling or “oppositional”, shut down, withdraw, rage, retreat into a special place, or become over-involved in things that help the individual to escape.” ~ Autism and Trauma:  Calming Anxious Brains 

It is tragic that the very methods a traumatized Autistic person may use to calm themselves from the trauma they’ve experienced, are often the very things those who are not Autistic pinpoint as “behaviors” or actions that must be stopped.   Not only is the person trying as best they can to deal with the initial traumatic event(s), but they are often being punished and told to stop using the only ways they know of that actually help them cope, thus creating further trauma.

“Traumatic events often occur during developmentally vulnerable stages in the individual’s life, and in this process become intertwined with the child’s bio- psychosocial development. How easy it would be to dismiss this in a child with an ASD, who by definition is struggling with development of a sense of self, and is uncomfortable in an alien world, even prior to repeated exposure to trauma.” ~  Commentary: Complex Post-Traumatic Stress Disorder. Implications for Individuals with Autism Spectrum Disorders—Part II 

Trauma, in relation to autism, is something I wish I’d heard about during those first few years so that I might have made better and different choices for my daughter.  Those I know who are Autistic talk about their trauma often, yet there is very little written about trauma in relation to autism in the general conversations currently going on.  This must change.

Em with the dogs

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