Tag Archives: Stimming

Beep. Leave a Message

Beep.

Waiting for a message that cannot find its way

from brain to muscles

that connect to sounds we know to be

recognizable words with understood context.

They elude, slipping and sliding

they have no legs

slithering in the muck of misunderstanding

those words that manage to escape from my mouth are heard,

but baffle.

 

Battling it out for recognition are the silent thoughts that are not

“you need to take a turn to share

“you have to wait our turn

“you want to go fast?

“you have to share”

Words, words and more words.

She has language they say, but the language she shouts is not a language at all

buffering frustration, relieving anxiety, clouding meaning

I’d whisper if I could

but I can’t.

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Tomorrow’s Presentation

Emma and I are giving an hour-long presentation tomorrow at the ICare4Autism Conference.  We have been discussing our presentation and while I would be most comfortable writing everything out and basically reading from index cards, Emma has proposed that we do a much looser, more fluid type of presentation, one where I introduce us and then she will type some thoughts about the topic she chose, My Body Does not Obey My Mind, I will respond, she will type something else and on it goes, ending with questions from the audience.

Emma wrote, “How about making this presentation more meaningful by having me talk and then writing an answer to a question and showing them what we mean when we use the words “body/mind disconnect”?

I asked her if she was okay if I brought up the topic of stimming too.  Emma wrote, “Maybe we start with something less controversial like nice questions about the weather.”

I said, “You mean I ask you a question about the weather and then wait for you to give a spoken answer? And then after you’ve said something, you will type an answer to show the difference in real-time?”

Emma replied, “You ask me a simple question like – How do you like the weather today? – because talkers like that sort of thing.”

So to practice, I said to her, “What do you think of the weather today?”  Emma said, “Pool!”

“So that’s a good example, right?” I asked.

Emma then typed, “Beautiful blue skies with whispering air that rustling leaves answer.”

I said, “That is such a perfect example of what you’ve been talking about.  What else?”

“Vanity will be put aside so that others may learn,” Emma wrote.

When I suggested I write what I would say in response, Emma wrote, “How about you talk about how my talking voice confused you and made you think what I said was my intention?”

I told Emma this way of presenting is nerve-wracking for me, but that I think it will make for a far more compelling and powerful presentation.  She then typed, “You can lean on me.”  I told her I will be practicing mindfulness and breathing to relax.  Emma wrote, “Good work, Mommy.  I will be right next to you lending support.”

I’m counting on it, Emma.  I’m counting on it.

Emma and Me

Emma and Me

A Traffic Jam and an Analogy

Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city.  (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center.  You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.)  We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at all.

When we pulled up, Soma was waiting, we were exactly two minutes late(!) so we jumped out of the car and raced in to begin Emma’s session.  Emma wrote, “What happens if traffic never gets moving?”

Pause.

“You are stuck in a rut.  It’s like autism.  When you have the diagnosis you are stuck in stims and cannot proceed where your actions want to be.  It is always clogged like a caged mind driving through traffic.”

This morning I asked Emma if we could talk more about this as I’ve not heard her talk about autism and stims in this way before.  In fact, Emma has referred to stimming as self-care ‘here‘ and ‘here‘ and I wondered if she’d be willing to talk a bit more about this with me.  She wrote that she would.  She wrote, “Circular stimming begins in self-care and can aid focussed mind, but samples hasty stress when consumed by the stim.”

“So what I hear you saying is that the stim begins as a way to self-care, but can also become the cause of stress.  Is that accurate?”  I asked.

“Understand that I cannot always filter all that is going on easily.  My string grounds me.  Not having it can cause horrible stress, but it can also distract me.”

I asked Emma if there was anything that another person can do that would feel supportive and encouraging, but that might also make that struggle easier.

Emma wrote, “Don’t force me to put it away, but instead gently remind me to stay in the task asked.”

“Is it okay to suggest you hold the string in your left hand or wrap it around one hand so that you’re still free to type?”  I asked.

“It is nice to be helped with kind suggestions, not nice to be stripped of any say in what is being done.”

“Okay, I totally get that,” I said.  “With Soma you wrote, “What is wrong with the world?”  Then you answered your own question by writing, “In fact nothing is wrong with the world.  We are the problems.  We are not right.  We see things and create a problem.  I don’t have autism label on my forehead like Soma’s dot.”

(Emma was referring to Soma’s “bindi” the red dot Hindi Indian women often wear.  Soma, being Soma, made a joke and did not take offense.)  Emma then wrote, “But I have to walk around all my life with this label.”

I asked Emma if she’d talk a bit more about this and asked, “Do you feel if you didn’t have a diagnosis, people would treat you differently?”

“People see me, think she is different, forgetting that I have feelings like they do. If people understood what autism really is, it would not matter, but people don’t, and so it makes life much harder.”

“So it isn’t the label or the word “autism” that bothers you as much as what that seems to mean to so many people?”

Emma wrote, “This is the biggest problem and causes mistreatment and misunderstandings.”

“Thank you so much for clarifying all of this Emma.  Do you have anything to say to parents and educators who are trying to understand?”

“Keep your open mind and listen to the people who are Autistic for information about autism,” Emma wrote.

Soma and Emma ~ June 12, 2014

Soma and Emma ~ June 12, 2014

Beauty

I see you spinning, spinning, spinning.  Your white t-shirt caught my eye.  Moving back and forth so many buildings away, through floor to ceiling windows, I might not have seen, I might not have noticed… but your white t-shirt, so very white, and then, and then I noticed your long limbs, moving in different directions from your body…

In my home, music is playing.  This morning it is John Lennon’s lullaby to his son, Sean.

“Beautiful,
Beautiful, beautiful,
Beautiful Boy…”

And I wonder has someone told you how beautiful you are?  Will you grow up knowing you are beautiful?  Are you being nurtured with those words?  Are you valued?  Is your spinning, spinning, spinning seen as an expression of your beauty?  Are you being reassured that no matter what, you are beautiful?

“Close your eyes,
Have no fear,
The monsters gone,
He’s on the run and your daddy’s here…”

Spinning, spinning, spinning… I glance up and you’re gone. Where have you gone?  The white t-shirt has receded.  The spinning has stopped.  But the lyrics continue…

“Before you cross the street,
Take my hand,
Life is just what happens to you,
While you’re busy making other plans…”

When you are grown, will you internalize what others have told you?  Will the lyrics of your life be one of beauty or something else?  Will you be able to see the beauty of all that is you?

“Beautiful,
Beautiful, beautiful,
Beautiful Boy…”

Spinning boy

Spinning boy

A Stim or “Self-Care”

I asked Emma if I could write a post about her string and she has agreed.  Yesterday she told Soma about her string.  Emma wrote by pointing to letters on a letter board.

“It is sometimes like a pet, but I don’t have to walk it every day. It does not bother me with noise. It helps me think and I can have secret names for it…”

When Emma was around two she had a mermaid finger puppet that she would hold in one hand and run up and down the hallway leading to our front door.  The mermaid had long black hair and she’d watch its hair sway as she ran.  Later, Emma began twirling a strand of her own hair.  She would twirl it around, but then began putting it in her mouth.  The strand would get tangled and knotted and no matter what we did, that strand of hair would escape our attempts to keep it contained.  We were advised to always put her hair in a pony tail, or braid it, which we diligently did, but despite our best efforts, the strand would come loose, wrapped around a sticky finger, wound and unwound; no brush or comb could tame it.

Then, one day at a birthday party Emma caught hold of a balloon string, the kind that one uses for wrapping presents with.  It was yellow and the balloon had long since popped and been cut away.  I kept thinking she wanted the balloon and asked the parent hosting the party if I could take another balloon as Emma’s had popped.  But Emma wasn’t interested in the balloon.  It was the string she wanted.  I was so fixated on the balloon it took several balloons before it dawned on me that the balloon was merely an annoyance and removing it from the beloved string was necessary.

That yellow balloon string was joined by another balloon string, this time blue.  Emma would intertwine the two, twist them together and twirl them.  This then evolved to packing tape, which Emma would strip down to narrower pieces and then gather a dozen or so up and twirl them about.  A few years ago, she began adding brightly colored duct tape to a few of the pieces, thereby binding them together and it became a kind of work of art, constantly changing, growing, evolving.

Now, the packing strips count to over a dozen, some are several feet long, others are shorter, some even less than six inches, but each string is part of a larger whole and when one goes missing, the upset it causes can be terrible.  Still, we have come to understand how important the string is.  When Emma is writing she wraps it around the other hand, or will place it in her lap, or sometimes will even set it down on the table next to her left hand.  But it is always close by.  We have come to see that this is Emma’s version of a stim, or as Emma has described it, “self-care”.

Yesterday Emma wrote about her string with Soma and I once again marveled at her creative and inventive mind.  I have come to see it as a thing of beauty, ever-changing, a metamorphic reminder of life, attachment, movement, and the never-ending dance we are engaged in with ourselves and each other.

A collection of balloon strings

A collection of balloon strings

The string with masking tape.  A precursor to the colorful duck tape that would follow.

The string with masking tape. A precursor to the colorful duct tape that would follow.

The "string" with duck tape

The “string” with duct tape

Soma and Emma

Soma and Emma

“Social Impairment”

“Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments” ~ NIH (National Institute of Neurological Disorders)

When I first learned about autism, as defined by many organizations, I understood it to be a “disorder,” with “social impairments” being one of its defining characteristics.  As autism was also spoken of as meaning someone who did not and could not understand others, and that the very word “autism” stemming from the Greek word “autos” or “self”, suggested a person who had little interest in other people, I assumed this meant my child didn’t care about or want to make friends.

Add to this the unfortunate wording of what so many of our kids engage in – “self stimulation” – which to my ears anyway sounded vaguely  masturbatory, and as we live in a society tending toward the puritanical, self stimulation, even to my liberal notions, carried with it a decidedly negative connotation.  The word “stimming” is a bit better, but even so, I cannot get away from the sense that this feeds into those negative assumptions about intent and a lack of interest in connecting with others, which is still believed by a great many.

When my daughter described stimming as “self-care” (you can read that post ‘here‘) I  was filled with admiration.  Self care is such a wonderful way to describe what I see her doing.  Self care is not about rejecting others, but instead describes a way of regulating oneself so that one can engage with others.  This idea that autism means disinterest in other people, an idea so many have embraced, does not describe my daughter at all.  To the contrary, my daughter and so many of my friends who share her neurology care deeply and take tremendous pleasure in their various relationships, just as those who are not autistic do.  (That this last sentence is even necessary to write, demonstrates how far we have to go.)

This idea that autism characterized by “social impairments” is something that drives me crazy.  It isn’t a social impairment.  It’s a complete misrepresentation and misunderstanding of what autism means to those whose neurology is called autistic.  My daughter does not lack a desire for friendship or have a disinterest in other people.   Unable to often communicate what she intends, constantly distracted by things others cannot and do not necessarily see, hear or feel and a need to move her body in ways others misinterpret, it is no wonder “friendships” present a whole series of issues for her.

So many of the assumptions about autism, based on what non autistic people witness and believe they are seeing and the theories they then develop supporting these assumptions continues.  Assumptions, spoken of as though fact, with therapies devised to “help” what is assumed to be true and yet, is not, is based on a false premise.   But when we were given Emma’s diagnosis, I did not question these various theories.  I, as did so many others, took them at face value, believing that though there was much we still did not know about autism, these beliefs at least, were some of the things we DID know about autism and by extension autistic people.

Oh how wrong I was…

Emma holding Teddy

Emma holding Teddy With her String

Emma Recommends…

Someone asked Emma what she’d recommend they say in answer to the question, “how high functioning is your child?”

Emma wrote, “I recommend being patient with them and saying that functioning labels will almost always give the wrong idea to those who are trying to understand.”

I have thought about Emma’s response a great deal since she wrote it and asked her if it would be okay to write a bit more about this, specifically in relation to some of the issues Emma confronts on a daily basis.   Emma gave me permission.

“Red car, red truck, red car, red car, red car, red truck, red backpack, red car, red car, red car, red car, red truck, red van, red car…”  Emma said as we drove to the airport yesterday.

It is inaccurate to say Emma does not speak.  She does speak and her words are accurate in that we did pass all of those things in exactly the order she listed.  In fact, a few times when I protested because I did not see a red car pass us, after Emma said, “red car,” Emma will correct me and point to a parking lot father away that I had not noticed, where there was a red car.   If there is one thing I have come to understand, it is that my daughter is never wrong about such things.  If she says, “red sweater” it is not a fantasy, it is because she just saw someone wearing a red sweater, even if I didn’t see them or notice.

Emma has never lined up toys, but she lines up words.  To those of us new to all of this, it can seem strange, even bizarre, but it is her way of taking care of herself and is calming to her, please read more about Emma’s thoughts on self-care ‘here‘.  However to people who do not know Emma, they listen to her, try to engage her in conversation and then make assumptions about her intelligence based upon the list of words she utters.  If they try to engage in a conversation about the red car we just passed, Emma will typically ignore them and continue with her list.

When it comes to “functioning” labels, people who try to have a conversation with Emma will, typically, come to the conclusion she is “moderately” or “severely” autistic.  People take this to mean she is “low” functioning.  But if someone reads a post, like this ‘one’ that Emma wrote, pointing to one letter at a time on her stencil board, they may assume she is “high functioning” or they may come to some other conclusion, but they will not assume she is “severe”.

Until we were able to help Emma tell us what she was thinking, we had no idea what she was capable of.  A little over a year ago her school sent home “reading comprehension” work.  Emma was unable to do any of it.  At the time we tried a number of different things, but still Emma was unable to answer the questions as they were written and it was assumed she did not understand the simple story given to her.  We had no idea how completely wrong we were in our assumptions.  It was the same with the ongoing insistence that she read out loud and that when she could not, this also then meant that she was unable to read silently or at all.

The same thing happened with simple addition and subtraction.  It was assumed Emma could not do the math sheets being given, meanwhile she not only knew addition and subtraction, but knew multiplication and division, despite having never been formally taught either one.  These assumptions were repeated when it came to telling time and the concept of money or what a penny, nickel, dime or quarter were worth.  At her IEP meetings it was assumed these “concepts” were too abstract and difficult for her to comprehend.  None of us had any idea just how wrong we were.

I wrote about some of this ‘here‘ and ‘here‘.  Now, just over a year later I re-read those older posts and am so grateful we know better.  Knowing better has changed everything, but had someone told me just over a year ago that Emma would be writing the insightful, wise and incredibly philosophical posts for this blog that she has been recently, I would have been incredulous.  As I’ve said before, this is much more an example of my neurological limitations than it is of anything else.

“I recommend being patient with them and saying that functioning labels will almost always give the wrong idea to those who are trying to understand.”

Thank you Emma for being patient with us!

"Red Dress"

“Red Dress”

An Interview With Emma About Stimming

What follows is an interview I conducted this morning with Emma about stimming.  Emma patiently tried to explain to me what stimming is like for her.  

A:  Is it okay to ask you some questions about stimming?  (For those of you unfamiliar with the term, stimming is a repetitive action or verbal output.)

E:  Stimming is fun.  And I am in calming and obedient service to those who are in charge.

A:   Are you being facetious when you write “obedient service to those who are in charge?”

E:  (Smiles)  Yes.  (Laughs)  The stim is a great way to roam around feelings that are too intense.  You treat me like a baby.”

A: Are you speaking specifically to me or are you using a more universal “you”?

E:  All people out there.  Bloated feelings despair and anger me.  Almost all feel too much to manage and I cannot be present all the time.

A:  Can you tell me more about stimming?

E:  I am not able to write about stimming because words cannot describe it.

A:  Can I ask some specific questions about it though?

E: Yes.  (Leans over and gives me kisses on my cheek.)

A: Is stimming ever not fun?

E:  Yes.  When feelings are too extreme, even a good stim won’t help.

A:  Is there anything that will help?

E:  A lot of patience and love.  Acknowledge my attempts to self-care and do not cause me more pain by trying to change or control me.

A:  What happens if someone stops or tries to stop you from stimming?

E:  It makes thick feelings worse.

A:  Do you ever feel stuck in repetitive loops?

E:  Yes, but so do others who are not autistic, but they are called passionate and are looked up to instead of looked down on.

A:  Yesterday you wrote: “Raging beasts of pain masquerading as stims cause many to misunderstand.”  Can you elaborate on that?

E:  Stims alter the persistent anxiety of life so that I am able to function as well as I am.

A:  So you weren’t saying stims are painful as much as that they help you cope with the pain and anxiety you often feel?

E:  It is impossible to describe to all who have not experienced a lot of distress.  Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence.  People treat those they believe stupid, very badly.  I am not stupid.

A:  I know you aren’t!  You are the smartest person I have ever met!!

E:  (Smiles and squeezes my arm.)  I am intelligent and cannot speak with the same brilliant words that are in my mind.

The timer goes off.

E:  Now we are all done!

A: Yes we are!  Thank you Emma for your patience with me and helping me understand.

Addendum:  I asked Emma just now if I could ask her one more question.  She told me that I could.

A:  Do you like the word “stimming” ?

E:  No.

A:  Is there another word you’d prefer?

E:  Yes, but words are not as meaningful to me as they are to those who talk all the time.

A:  If you could choose any word other than stimming, what would it be?

E:  Self-care

Em with her string!

Em with her string!

One of My Favorite Blogs…

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

Dreams, Love, Loss and Gratitude

I had a dream last night that unsettled me.  I dreamt that I was standing with some other people and saw a woman with her young son.  He was small, maybe five years old at most.  I was fascinated because he was holding what looked to be a “string” like Emma has, but much smaller.  It was proportionately the same size as Em’s given how little he was.  I turned away because Em was saying something to me and when I turned back around the mother and her son had walked away.  On the ground was the little boy’s string.  So I picked it up and ran after them.  As I approached the mother I held out the tiny furl of string and said, “I think this is your son’s.  I wouldn’t want him to lose it.”  The mother stared at me and said, “What is that thing?”

I said, “Oh!  I think it’s maybe his string.  My daughter…”  but before I could finish she interrupted me and said, “That isn’t ours.  It’s garbage.”  I felt as though I had been punched in the stomach.  And then she turned away, carrying her son who gazed at me wordlessly over her shoulder.  I stood there watching them walk away from me and felt stunned and confused.  I wondered if maybe I’d somehow misunderstood and that perhaps it wasn’t important to her child.  And then I felt ashamed for having approached them and said anything.  Ashamed that I’d assumed it was important because my daughter’s string is so important to her.  Ashamed too, that what is considered beloved and of value to my daughter is seen as garbage by another.  I stood there feeling these things and then I turned to find my daughter was no where in sight.  I felt that horrible surge of panic and adrenaline as I began going through the various scenarios of where she could be or what might have happened to her.

When I woke up I wanted to cry I felt such unspeakable sadness.  All morning that dream stayed with me like a shadow.  All morning I have felt fragile and on edge.  And then I read my friend Gareeth’s latest blog post.  You can read it ‘here‘.  It is a daughter’s moving and powerful tribute to her mother.  I cried as I read because it is so beautifully written, but also because it is about profound loss as well as gratitude for what wasn’t lost.  Loss of time, loss of relationships, loss of missed opportunities…  and as I read I realized that dream was also about loss and judgement and denial and how we harm those we love.  And now as I sit here in my studio looking out at the bumper to bumper traffic on the 59th Street bridge, the rain pours down.  I can hear drops splattering the top of the air conditioner that juts out of one of my studio windows in irregular plops and pings.  Rain drops stream down the windows obscuring my view and I am surprised that I hear no angry honking given how treacherous the traffic is, just the occasional siren can be heard in the far distance.

I feel so grateful to all those people driving their cars who aren’t honking at each other.  I feel so grateful that though the traffic is at a crawl, people are being patient and it gives me hope.  Let me be patient today with every person I come into contact with.  Let me give myself the same respect and patience.  Let me be aware and kind and respectful to others today.  Let me feel gratitude for all that I have.  Let me feel my feelings and not behave as though my feelings are facts.  But most of all, let me know the difference.

Em’s string – February, 2013

Em's string

 

An Interview With an Autistic Teacher Who Teaches Autistic Students

What follows is my interview with a teacher.  A teacher who teaches Autistic students.  A teacher who is Autistic.  

When were you diagnosed with Autism?

 I self-diagnosed as having NLD (Nonverbal Learning Disability) (which I mistakenly thought was mutually exclusive to Autism – a good reason to get a professional diagnosis, not a web diagnosis) in college, which brought me a lot of peace of mind and self-understanding. (And helped me make peace with a lot of my past.)  I was in my 30s when I finally made the decision to get the formal diagnosis. (I was both right and wrong: I do have NLD, but I’m also on the Autism Spectrum.)

I got the diagnosis because I was having a lot of trouble communicating effectively at work, and I was getting written up for it.  My supervisors were trying to work with me, but I was afraid I was going to lose my job.  It wasn’t the first job I’ve had that happen at.  The problems my coworkers were going to administration about were hauntingly familiar: my voice tone, my inability to read others voice tone, my quick answers that don’t make sense and sound frustrated.  It was a pattern I’d seen before and had never had any success stopping or changing.  I knew I needed help if I wanted to save this job.

Why do you prefer remaining anonymous?

 For now, at least, I want to maintain control over disclosure.  Also, privacy.  The web is public and it stays there forever.  I’m not comfortable with anything about me, disability related or not, being out there like that.  I don’t have anything meaningful out on the web under my real name, and I’ll keep it that way, thanks.

How did you get into teaching?

 I think it’s in my blood.  My dad is a teacher.  I remember being in first grade, when everyone wants to be police officers and firemen: I wanted to be a special education teacher.  I got a BA in Psychology and spent 5 years doing direct care before moving to work in the schools.  I worked as a paraprofessional while I got my M.Ed.  I’m certified in intensive special needs and deaf/blind education.

Would you talk about your childhood and how autism affected it?

 I did the stereotypical “little professor” thing.  My mom says my favorite word as a kid was “actually.” I had friends growing up, and if my parents thought my relationships with them were a little off, I never noticed.  I had no other standard of relations, and I was happy with what I had.  My mom tried vainly to model more appropriate social interactions (my poor mother) but it all went right over my head (I do not learn from environmental cues or social models.)

Middle and high school were rough.  I was the victim of significant bullying. Kids are mean.  I considered changing schools (I went to public school) but decided against it.  Instead, I dove into my interests: computers, foreign languages, band, technical theater. Bullying happens during the unstructured times of the school day.  I was never unstructured, participating in more classes and extracurriculars than there were hours in the day. (I seriously could have used Hermione’s time turner back then….) Not only did it give me structure and purpose, but it successfully buffered me from my would-be tormentors.

Are you concerned that if the school where you work knew you were Autistic your job would be in jeopardy?

 I’d be worried about an employer learning that I was Autistic before I had a chance to prove myself as a teacher, yes.  The concerns about my communication problems at this job came in the context of “we love your passion, but…” I had already proven myself, multiple times over, as a good teacher getting excellent results with students who are considered difficult.  Afterward, I could see I had to re-prove myself because the words of my NT (neurotypical) paraprofessionals (sometimes not just in the area of classroom communication) carried more weight than mine did.  I have reason to believe we’ve gotten past that now, but it lingers in the back of my mind.  I know I have to work harder and sometimes that makes me mad.  Luckily, I have an administration and paraprofessionals who support me in the work I do and who respect that I am approaching it from an Autistic perspective (even if they don’t always understand that perspective.)  I haven’t always been that lucky, and I am continuously grateful for it.

You say, “with the right accommodations..” can you give an example of a couple that are helpful?

 Using written communication when possible.  This frees me up to only address questions that need to be addressed, which is means I am more likely to be clearer because I can devote the needed resources to perspective taking and processing time.  Regular meetings.  I don’t pick up on things incidentally unless I’m working hard to pay attention to everything that is going on.  That’s impossible when your class is spread between multiple locations.  Regular meetings give me a chance to make sure we’re all on the same page at the end of every day and put out any fires before they get out of hand.  However, the effectiveness of these meetings is predicated on….

Direct communication from staff. This is quite possibly the hardest accommodation to get and the most important.  I ask everyone I work with to be direct with me and everyone says they will. But saying and doing are not the same thing.  Most NTs find being as direct as I need them to be as impossible as I find reading their non-verbal language.  It’s a real communication gap.  I’m incredibly fortunate that I have a para that can bridge the gap.  Some of my new paras are starting to learn as well, and I’m starting to learn to read their individual cues.  Translation is never as good as reading the original, but we get by.

Having communication support people I can turn to.  I have 2 coworkers I can trust to run things by when I’m concerned about how I’m coming across or not sure if I missed a cue from someone else.  This doesn’t help, of course, when I’m oblivious to the fact that there was something I should be concerned about in the first place, but it reduces the pool of potential landmines, at least.  Also, these are people who can listen for what I’m not hearing on the rumour mill (because I’ll never hear it) and potentially warn me of landmines I’m not aware of.  They’ve definitely saved me from several potential disasters already this year.

What are the most common misperceptions you face in trying to teach this population?

Top five misconceptions held by administrators, paraprofessionals, parents, and community members that make my job harder:

  1. That my students cannot possibly be capable of having control over (or a meaningful say in) what will happen with their lives.
  2. That the fact that most of my students may never be fully independent (living alone, working full-time) means that we should not bother teaching them community living and vocational skills.
  3. That my students are unpredictable or dangerous.
  4. That a student who may exhibit challenging behavior in the school environment shouldn’t be allowed in the community because he might exhibit the same challenging behavior.  (This one really makes me angry, because it doesn’t teach the kid anything useful. Give me appropriate staffing to handle the behavior; don’t penalize the kid.)
  5. That my students should be pitied.

Have you been surprised by any child’s ability?

 Have I have taught a student who had more skills than their assessments claimed? Absolutely.  Have I ever had a student make more progress in a year than I anticipated and had to amend the IEP part way through? I love it when that happens!  Have I ever taught a student who may not have a lot of skills that can be formally assessed, but who enriched my classroom in so many other ways?  All the time.  I don’t like the word “surprised” – it’s an autism thing, I guess.

How do you deal with self-injurious behavior?

 Behavior does not occur in a vacuum and all behavior is communication.  SIB (self-injurious behavior) usually has a sensory component, but a FBA (functional behavior assessment) will give clearer answers.  We need to look at the environment, the student’s communication strategies, and antecedents and consequences.  What is the cause of the stress?  How can we teach the student to deal with it more effectively?  Generally, positive behavior supports are most effective, but they have to be individualized in order to be effective.  What is reinforcing to one student may be aversive to another.  Behavior does not occur in a vacuum, and we cannot try to treat it in one.

Can you describe some of your own sensory issues and how they impact your life and work?

 I only recently really mastered reliable daily living skill routines.  Showering was a difficult sensory experience for me for years.  I still have trouble with toothbrushing and flossing, but I’m working on it.  I eat pretty bland foods (though, due to food allergies, my diet is both more varied and more monotonous than average) because I don’t care much for significant smells or tastes.  I’ve gotten more tolerant of different clothing textures than I was when I was younger.  I still freak out at certain textures, but my repertoire has expanded significantly from the “cotton/poly blend only” I wore when I was younger.

At work, I’m in control over the visual environment, since I’m the classroom teacher.  So I keep it pretty visually quiet, both for my own sake and that of my students.  Any conversations go out of the room, which really helps all of us focus.  My para knows to ignore when I’m self-talking, which is my primary self-calming strategy (I try to take that out of the room too, when I can.)  I stim when I need to.  So do my students. I don’t see that (the stimming) as particularly impacting our work.  I bring figits or sit on the floor during meetings (I sit in the back so it’s not disruptive.)

In previous years, when I was trying to pass and having more communication problems, I needed more sensory breaks and did a lot more self-talk (which in turn cased more communication problems.)  Now that I’m not trying to pass, I’m more comfortable and less stressed, which means I’m generally more sensory regulated – and if I’m not, dealing with it is no big deal.

Are there specific things you suggest schools can do to help their students?

 I think a lot of schools do the first half of this puzzle really well.  They have proactive sensory programs: do this activity after this interval for this amount of time.  And they have reactive programs: if you see this behavior, offer these choices for this amount of time.  The good ones have a mixture of the two.  Where the programs tend to miss the mark is in taking it to the next level: teaching the student to recognize when their sensory system is starting to become disregulated and what to do about it.  There are some good programs out there for teaching this skill: The Alert Program(TM) is probably the most popular.  I’m a fan, personally, of the Incredible 5-Point Scale, because the students can apply it to more than just their sensory system and because it has a more flexible metaphor (colors, numbers, can use pictures) and it ties into emotional regulation and understanding.

What is your opinion regarding stimming?

 I stim. My students stim. I won’t stop a student from stimming. My para (the only NT  in the room, poor guy) frequently points out that everyone stims, it’s just that society has declared NT stims socially acceptable and autistic stims unacceptable.  That said, there are also students who demonstrate self-stimulatory behaviors that are not self-calming but rather a precursor to or the beginnings of further stressed or out of control behavior. It is extremely important to know your student and to know the difference between these two types of behaviors. In one situation, the student is using their own coping strategies to de-stress, and in the other the student is indicating the beginning of losing control, and the environment or stressors needs to be addressed to prevent further escalation.

Have you ever witnessed treatment of a student that you objected?

 I’d love to say “no,” but yes, I have. Most of the time it’s things like not giving enough wait time and over-prompting. I get incredibly frustrated by the way that students who are not socially engaging, especially if they have challenging behaviors, tend to get left out in favor of the “easier” kids. But also, yes, I’ve seen what you’re really asking about. I’ve seen students physically moved or restrained when they shouldn’t have been.  I’m trained in the use of physical restraint, and yes, I’ve had to use it. Do I like it? No. Is it ever my preference to use it? No. Will I use it as a last resort to keep students safe? Absolutely. And I would 100x prefer to be called in and asked to do so then to have people who are untrained and don’t know what they are doing try to make do.  That way only leads to injury, trauma, and possibly death.  And I’m not afraid to call it like I see it.  I’ve reported coworkers to administration and when needed I’ve filed 51a reports (reports of abuse or neglect.) There are certain benefits to having an overarching sense of right and fair and not feeling bound by social conventions, at least where the students rights and safety are concerned.

Is there any methodology that you prefer and why is that?

The short answer to this question is no.  I am very wary of any program that says that a particular methodology is right for all students with diagnosis x.  I don’t believe that to be true.  The role of the teacher is to be familiar with the breadth of instructional tools that are out there and to find (or adapt) the right tool for the individual student to learn the specific skill.  For one student, that might be Discrete Trial Training to learn to attend to directions given in ASL.  For another student, that may be a phonics curriculum to learn to read.  A third student might be learning vocabulary in the natural context of a community work placement.  The one thing that all of these methods have in common is data.  I need reliable data taken daily on student achievement to know if the methodology is effective and the student is making progress, or if the instructional method needs to be changed.  There is no right or wrong method; I don’t even believe there is a best method. The question is whether the method being used is effectively teaching the student the desired skill, and there is only one way to answer that question: data.

Are there any methodologies that you believe are harmful?

Aversives, repeated use of any form of punishment (including time outs,) restraint used as a programming tool as opposed to an emergency procedure. If you’re doing it on a regular basis, something is wrong.

How do you work with a curriculum given your student’s disparate needs?

 The short answer is good staffing ratios and competent paras.  Also, using the principles of Universal Design for Learning.  By differentiating how I engage each student, and with paraprofessional support for behavior and data-taking, I can have three students engaged in a group setting.  I can have a fourth student, with additional paraprofessional support, engaging in the same material with us and connecting to the group as able. If you’re counting, that’s 3 staff and 4 students.  I’ve just described to you what my classroom looks like most days.

In an ideal world where Autism carried no stigma and you were able to be open about being Autistic, are there specific things that would allow you to do your job better?

 I would like to be able to work with my students on understanding Autistic culture and the Autism community.  My school does very well teaching our Deaf students about Deaf Culture and their Deaf identity.  I believe we could do the same for the Autistic students.  I would like to make that happen, and I know that no one else will lead it, but it would require being open about being Autistic and I’m not ready for that yet.  I trust my administration and those I’ve told, but I am not comfortable working with the rest of my co-workers as an Autistic person, which I’d need to do in order to make that happen for these students.  It’s something I want to do, but not yet.  One day, I hope.

What do you advise people who are thinking about entering the field of special education?  Is there anything you wish you’d known when you were just starting out?

 Work with kids with disabilities before you go into the schools.  Work at multiple schools (or with kids from multiple programs) before you start teaching.  One of the downsides to being in the schools, especially since most teachers work as paraprofessionals while they get their degree, is that you work with one student, or one group of students, for years.  There is frequently only one or two special education classrooms in the building, so there aren’t a lot of models to observe.  I have had too many experiences of people singing the praises of teachers I know to be mediocre at best, because they have no standard to compare them to.  See as many different students and teachers as you can before you settle on a specific subset of the population, a school, and a classroom where you want to work.  Most importantly, spend time working with typically developing children.  You’ll need that reference to fall back on so you can recognize what’s typical age-appropriate nonsense and what is actually behavior that needs to be addressed.  We tend to acquire tunnel vision in special education; make sure you don’t put the blinders on until you have to.

What do you advise parents look for of non-speaking children seeking a good school?

 Without knowing the specific student or her goals, it is impossible for me to say what program is best.  I can tell you what I look for in a school where I would consider working.  The one thing that sends up red flags and makes me stay far away is a school that believes there is one right method to teach all students.  Simply put, there isn’t.  Beyond that, I look for evidence that the people there know how to use picture supports and both high and low tech communication supports, not just for schedules but integrated into everyday activity: academics, leisure/social time, specials, lunch, etc.  For an older student, I look for evidence of functional skills and community based learning, not just using pictures to represent and role-play functional community activities, but actually getting out into the school and local community and learning the skills in the real environment.

If you could create a “dream school” what would it be like?

My dream school would have the physical environment, educational methodologies, peers, and teachers and paras with appropriate training and ratios to give each student access to both the general educational curriculum and any related services she needs to be successful as an adult: whatever that looks like for each individual student.  My dream school is not one school, but a range of options for every student so that the right option is always available.  That option would naturally change over time as the child grows and her needs change, and no one would question the need for that change.

Have you had parents or other staff question the competence of a child in your class?

 I had a former administrator tell me a student didn’t matter because his family would take care of him after graduation and to focus all my attention and resources on another student who, she said, actually had a chance of being fully independent. I basically ignored her. They are now both working in the community with support.

 Have you had a parent question their child’s competence?

 Not directly, but I certainly have known parents who have underestimated their child’s academic or independence skills.

 How have you dealt with that?

 I don’t judge, because I can’t.  I don’t walk in their shoes.  I only see their child at school.  I only know what their child does in one environment and I understand well that students will present differently in different environments. I will encourage bridging to home; I will provide support; I will provide information and data. But I will not judge, because I do not, I cannot, really know.

A Letter To My Daughter’s Teacher

*I’ve never removed a post before.  But I couldn’t get away from the creepy feeling the original post was giving me.  I have kept much of the original content, but rephrased it so that I’m not speaking as though I were my daughter, which I have no right to do, and am instead speaking as her mother, which I am.

My daughter, Emma will be in your class this year.  A few days ago, Emma told me she was “scared to go to new school.”  Emma loved her teachers and friends from her old school.  So I want to introduce you to her.  I cannot speak for Emma, I cannot know if everything I write here is completely accurate, but these are things that I have learned over the years, things that are specific to Emma and that may be helpful, at least that is my hope.

Sometimes Emma does not look at you when you are speaking to her, but that doesn’t mean she doesn’t hear you.  Her hearing is excellent.  She may not know how to process what you’ve said or she may not know what is expected of her.  Often if you ask Emma a question, especially if it’s a question she knows the answer to she either won’t answer or will say something nonsensical because she isn’t sure what’s expected of her or why the question has been asked.  Sometimes people get nervous and don’t know what to say, so they’ll ask, “Oh Emma, that’s a pretty dress.  What are you wearing?”  or  “What color is that?”  These are questions that aren’t being asked for any real purpose or they are testing questions.  Typically these are the kinds of questions Emma will not answer.

Change is difficult for all of us and Emma is no exception.  Having a written or picture schedule for the day and week will reduce her anxiety.  Like everyone, Emma really appreciates having a say in what happens throughout the day.  Whenever appropriate allowing her to set a timer for a one, two or five-minute warning before a change in activity will go a long way in helping her do what she needs to prepare herself.   Usually Emma will go along with any change if she’s given sufficient warning.

General Disposition:

Emma loves people.  She is gregarious.  Her fall back position is one of happiness.  She is also very sensitive.  She can tell if someone is upset, stressed or angry and can become easily overwhelmed by those feelings.

 Particularly good at:

Emma is terrific at leading others.  She can be extremely persuasive and is a great negotiator.    Her negotiating skills are wonderful for math and science and her leadership skills are wonderful motivators.

 LOVES:

Emma loves music, dancing, being on stage in front of an audience.  Give Em a microphone and she will sing and dance.  She loves “talent shows.”  She loves any game involving running, swimming, holding her breath under water, laughing and being silly.  She loves playing versions of “Duck, duck, goose” or as Emma would say, “Raincoat, raincoat, umbrella!”  Musical chairs is another favorite, dance parties, hide and seek, dressing up, bouncing, swinging and going to any playground.  Emma is very athletic and very girly.  She likes cooking and while she won’t eat most of what she cooks, unless they’re pancakes, she will enjoy the opportunity to cook.

Does NOT like:

Emma gets upset if she is told not to do something she has just done.  Example:  “You cannot shout!” after she has just shouted is difficult for her.  Obviously she CAN shout, she just did, with you right there watching.  Telling her she “can’t” is not true and it’s confusing.  Instead say, “You mustn’t shout.” Then in a voice that models what you’d like you can say, “Here is how you can speak instead.”  By doing that, you are helping to give her other choices.  If she is not allowed to do something, be sure to tell her what she can do as an alternative.

Academics:

Emma is fairly new to all academics.  Within the past year she has learned to form the letters of the alphabet and is now reading, writing and typing at a 1st – 2nd grade level, likewise with math.   Emma loves the Hubble Imax movie and her favorite museum is the American Natural History Museum.  She is showing interest in learning about our world, the ocean, the moon, other planets and the universe.  She told me last night that she doesn’t want to be an astronaut though, she said she wanted to be a “singer on the stage!”

Needs extra help:

Emma resists academics.  They are hard for her and she becomes upset when she makes a mistake.  She doesn’t like getting anything wrong.  But if you help her succeed, she will flourish.  If she is reading and doesn’t know a word, give it 15 seconds or so to see if she can work it out on her own, (don’t say “sound it out” or “try again” because she didn’t learn to read phonetically and while she is able to sound some words out on her own, it won’t help her with all those exceptions like limb and thought.)   Emma has a strong desire to learn and an even stronger desire to do things independently.  With your help, she can and will succeed.

Frustration and Signs to watch for:

Emma gets a look of panic on her face.  She may begin breathing with short sharp intakes and she will often talk to herself in a high-pitched questioning voice laced with anxiety. When Emma is overwhelmed she may shut down and withdraw.  She may begin scripting, using set phrases she’s heard. Those scripts may be in context with what’s going on or their connection may not be clear to you, but that doesn’t mean there is no connection, it just means you don’t understand or know what it is.  Emma often has trouble processing her feelings and the feelings of others.  Sometimes she needs help identifying those feelings, just as we all do.  Sometimes she will start repeating things other teachers have said to her in the past in a scolding tone, such as, “No Emma!  You may not __________.  If you ____________ we will take ________________ away!”  When Emma is overwhelmed she has to rely on her scripts as all other words have left her. Try to listen even if the words seem meaningless, she is trying to communicate her feelings of distress to you.  Sometimes she might say, “You have to ask for help!”  This is what she says when she needs help, but sadly this can confuse those who do not know Emma well.  She might also say, “Do you want to go swimming?”  Which means she really, really wants to go swimming.  If you show her on the schedule when she’ll be able to go she will usually calm down.

It’s too late, the storm has hit!

This is not the time to engage in a power struggle.  Emma is not trying to manipulate you or upset anyone.  She is simply expressing her frustration in the only way she knows to.  Sometimes if she’s very upset she will bite herself or punch herself, usually on the hand or arm, sometimes if things are very bad, she will punch herself in the face.  Do not exacerbate this challenging time by raising your voice or telling her “You cannot hit!”  or “You cannot bite!”  or even “We don’t bite.”  (See Does not like paragraph above) Restraining her in an attempt to stop her will not prove helpful either.   Emma bites or hits herself because the feelings of frustration are overwhelming her.  The pain she causes herself by biting or hitting is within her control and is therefore preferable.  It things have escalated to the point where Emma is hurting herself, everyone must try to understand what has happened before things became this derailed and try to prevent them.  Sometimes it isn’t possible, but Emma is trying to cope as best she can.  When she is calmer you can work on helping her find alternate ways to cope.

What helps you when you feel overwhelmed?  What things do you do when you feel anxious, scared or upset and no longer feel you’re able to function?  Maybe the things that work for you will help Emma too.  Remember, be patient.  Showing Emma once or twice will not mean she’s learned, she will likely need to be shown numerous times.  Often there is a sensorial component to her upset.  She is overwhelmed with feelings or a sensation or too many sensations.  She may be tired or hungry, too hot, cold or thirsty.  Sometimes a sensory break will do wonders to restore her equilibrium.

Strategies that work well:

Make it into a game!  Music can be incorporated into just about any activity and can change anything.  High affect and silliness can make something that feels difficult seem fun!

Humor:

Emma loves anything silly and ridiculous.  Silly faces, silly dances, playful interactions, games!  She has specific jokes she likes to play with specific people.   Emma loves to laugh.  She loves to make up word games.  She enjoys taking a word like “uncle” and changing it to “Jungle.”  She will happily tell you that she has a “Jungle Andy and a Jungle Victor.”  Come up with silly word games and Emma will join in with glee.

Things that have a tendency to backfire?

If you say, “You have to do ________________.  If you don’t, I’m going to take __________________ away” will make her upset and anxious.  She will have a hard time concentrating because she will worry about having something she wants taken from her.  Instead say, “You can ______________, but first you need to __________________.”  That way Emma can concentrate on having/doing something she loves as opposed to taking something away.

Emma’s String:

 Emma has a string that she loves.  Please do not take away her string or use it as a form of punishment.  Her string helps her focus and it makes her feel safe.  If you take it away or threaten to she will become completely overwhelmed.  Sometimes, when she is writing or typing and needs both hands to do so, you can ask her to set her string near her or in her lap.  If you allow her to control where she puts her string she will feel safe enough to concentrate and do her work.  Also (a little secret) if you get some string or ribbon and copy her movements in a playful way, you might see and feel for yourself how wonderful it can be and Emma will be delighted that someone wanted to interact with her in a way that she loves.

Food:

Emma does not have any allergies or foods she cannot eat.  However she likes to eat the same food everyday.  Some food looks, tastes and smells strange to Emma.  Please do not make her eat anything she isn’t interested in eating.  Please do not tell her she must finish something in order to have something else.  If Emma shows interest in something someone else has or is eating and it’s appropriate, do allow her to smell, lick, taste or eat it if she wants to.  And please do tell me so that I can find whatever it is and offer it to her at home too.  We will pack Emma’s lunch everyday.

One last thing:

 Assume competence and respect Emma’s process.   Emma can and does learn.  She may take longer or less time than another child, but she will learn.  She is extremely independent.  Show her, help her, let her.   You are her role model.  Emma has dreams, just as we all do.  You can help her achieve those dreams by believing in her.

 I am available to talk, discuss and strategize.  I am here to help in any way that I can.  Nothing is more important to me than my daughter.  Please keep in touch with me.  Please let me help in any way that I can.  There is no detail about Emma’s day that is too small.  Do not hesitate in emailing me _____________ or calling  _____________. 

 Thank you so much,

Ariane

Emma performing at her old school


*The above “letter” was inspired by a form letter Ann sent me by Jene Aviram© http://www.nlconcepts.com

Running with Mermaids

When Emma was a toddler she had a mermaid finger puppet.  It had long black hair, sported a blue bikini top and had a blue sequined tail.  At the time, I thought it was the first of what would be many dolls.  I loved dolls when I was little.  My favorite doll was named Maribelle.    Her left hand, the victim of my rage when I was four and hacked off three of her fingers with a pair of pruning shears was a reminder of anger gone awry.  I immediately regretted my actions and attempted to glue her fingers back on.  Crazy glue was not the common item found in every tool box as it is today.  My options were Elmer’s and rubber cement, neither of which could repair the damage.  I then tried tape with no better results.  At some point the fingers were lost or I threw them away, I can no longer remember.  Mirabelle’s fingers, while physically gone, are forever etched in my conscience, an impulsive act I could not undo.  Still, I loved Mirabelle and though I eventually moved on to a series of other baby dolls, little girl dolls and finally Barbie dolls, my first love was Mirabelle.  All these years later Maribelle resides in the blue and silver striped trunk she originally came in, now in an upstairs closet  in my mother’s house.  I have never been able to part with her, my thinking was that if I had a daughter, perhaps she would one day want to have her.

When Emma showed interest in the mermaid, I had high hopes for Mirabelle’s return.  Only, it turns out, Emma’s mermaid did not hold the same sort of feelings as Mirabelle had for me.  The mermaid was the beginning of a series of objects that Emma was fascinated by.  The item that eventually replaced Emma’s mermaid was The Corpse Bride from the Tim Burton movie with the same name.  Then it was Jessie from Toy Story and after that a long stick picked up from the playground.  From there she gravitated to a series of sticks, balloon strings and her current favorite: packing string.  The packing string is a work in progress, held together in the middle with masking tape, then scotch tape, which was then covered in reinforced packing tape and finally covered in turquoise duct tape.  When we were at Granma’s house, Emma covered the turquoise duct tape in masking tape she found in a drawer in my mother’s kitchen.  When we returned home, Emma covered the masking tape with yet another layer of the turquoise duct tape.  It has a certain heft to it and looks like this.

I know a little more than I did when Emma first ran back and forth from our front door through the house and back to the front door with the finger puppet held between her thumb and index finger, the mermaid’s black hair swinging to and fro as she ran.  Today Emma holds her “string” as we call it, in her hand while dancing.  Her string serves as part security object, part stim object, part something else that I am still trying to figure out.  “An attachment to peculiar objects…” is one of many characteristics of autism, but when Emma was little, it was just a mermaid.  Who knew?

To read my most recent Huffington Post piece, click ‘here.’

Vestibular & Proprioceptive Movement

From the moment Emma could walk (14 months – she went from crawling to running) she would do what we used to call, Emma’s circuit training.  This was before we knew she was autistic and didn’t realize that this was Emma’s very specific way of trying to get the kind of vestibular and proprioceptive movement she so craved.  In fact, it all looked so “normal” or “not autistic” that it took me a long time to understand this was a kind of stimming.  For more on stimming from previous posts, go to:  Compulsions & The Velcro Strip.

I was always trying to find something that might engage Emma.  When we were at the toy store, I found a mermaid finger puppet with long black hair and a blue sequined tail.  I brought it home and to my delight and surprise Emma grabbed hold of it and ran from the living room down the hallway to the front door.  When she reached the front door she swiveled around and raced back to the living room.  This went on for quite sometime and I was so excited I’d found a toy that she liked, I didn’t spend too much time wondering at the peculiarity of her “play”.  A few weeks later I found another mermaid finger puppet and a doll’s stroller and brought both home, only to have Emma completely ignore the new blonde mermaid finger puppet, but she loved the baby stroller.

Emma’s favorite circuit training, which was also how we came to call it that, was the obstacle course she would do in our living room, over and over and over and over again.  She ran from the living room couch into the TV area, jumped up on the couch there, crawled through a tunnel we had set up, ran into the kitchen, around the butcher block island, down the hall to the front door and back again.  Even better was to do all of this with the baby stroller, which she pushed along her route, knocking things over as she sped along.  I wasn’t alarmed by her circuit training, after all, Emma’s older neuro-typical brother, Nic used to spin around until he became so dizzy he’d fall down.  Kids do these things, right?  Right?!

When I took the children to the playground, Emma wanted to go on the swings for as long as she could before the lines became so long she had to get off to give another child the chance to swing, at which point she would get off only to get back in line. She wasn’t much interested in playing with other children.  She wanted, needed to swing.  At her special education school she is allowed to go to the sensory gym periodically, the idea being that children who crave vestibular and proprioceptive movement become more regulated when given the opportunity to swing, have their bodies pressed in the squeeze machine, etc.  Only Emma never seems to get more regulated.

The principal at her school laughed and said, “I’ve never seen a kid who didn’t get tired… ever!”

And she doesn’t.  When we are in Aspen during the winter, Emma will ski for five hours, go to the Aspen Recreational Center where she’ll swim for another two to three hours, then climb on the climbing wall before going grocery shopping, where she’ll push the “customer in training” shopping carts, then stop up at the barn where she will do a weight lifting workout before coming home and demanding that we play a couple dozen games of hide and seek.  Even then she’ll get up bright and early the next morning at 6:00AM sharp if we’re lucky, 5:00AM, if we’re not.

Emma – age 5

For more on Emma’s journey through a childhood of autism and our exhausted attempts to keep up, go to:  www.EmmasHopeBook.com

Compulsions

I’ve been thinking a great deal about “stimming” which was the topic of yesterday’s post.  Stimming or self-stimulation is the word used for what many children and adults do who have been diagnosed with autism.  It is the repetitive behavior, often as varied as the personalities of the person engaged in it, used to self-regulate or calm oneself.  Many people with autism suffer from a wide range of sensory issues.  Emma may well experience light and sound differently than I do, for example.  I know she experiences physical pain differently.  A small, seemingly incidental scratch causes her to howl in pain, clutching the injured body part, scratching at it or rubbing it vigorously.  Yet a fall, that looks extremely painful, will be ignored.  Days later a large bruise might appear or swelling, which only makes one that much more aware of how it must have hurt and yet she didn’t seem to notice.

Sometimes Emma will plug her ears with her fingers when someone is speaking, often it is when one of us join her in singing a song.  I’ve noticed she does this when her air conditioner is on as well.  The low hum it makes is something she is unable to tolerate.  All of these examples are specific to Emma.  And it makes me wonder whether there are many other things I cannot know about;  does she see certain colors in a way that is painful?  Are some colors brighter to her, even garish and therefore hurt her eyes to look at?  I know certain sounds hurt her ears, sounds like that hum of her air conditioner, does it merely bother her or is it actually painful?  I can’t know.  What I do know is that if  one was bombarded with images, noise, sensations that I could not verbalize, would I not seek refuge in something I could control?  I don’t know, but I think I would.  Is Emma, when she twirls the plastic backing to the velcro strip around and around, soothing herself from an overload of external senses?  It seems likely.

Yet how is this so different from addictive behavior?  Is it not somewhat similar or in the same general ball park?  If someone engages in hours of video game playing or round after round of Solitaire on their computer or Spider (my particular favorite), how is this not also a kind of stimming?  At the very least it is certainly perseverative behavior.   If the game was just played once or for a few minutes that would be one thing, but what of the person(s) who plays endless games, one after the other?  A friend of mine said to me a few months ago, “Sometimes I ask myself – how many times do I have to win before I’ll stop and say that’s enough?  Because when I win there’s no real satisfaction or feeling that – okay now I’m won, it’s time to stop.  I mean how many hours have I wasted playing a really stupid game on the computer over and over again?”  I’m guessing many people can relate to this.  Even if they aren’t into computer generated games, there are other things many of us engage in, mindless “games” or habits we do that we wish we didn’t.  Consider all the games, video games, obsessive exercising, compulsive eating, compulsive dieting, any and all obsessions, compulsions or habits that get in the way of our lives or health, all the things we do while knowing they aren’t good for us and yet we can’t help ourselves from doing them anyway?

When I watch Emma twirling her strip of plastic, while jumping up and down and singing I am reminded of my own perseverative behaviors, the hours I’ve spent doing mindless activities, all to what end?  Am I too, calming myself?  Is this my own brand of self soothing?  I have harsher judgements about my activities, particularly computer games, than I do of Emma’s activities.  I have even, periodically deleted all games from my computer or mechanical device, only to reinstall at a later date.  Certainly there is a compulsiveness to my behavior and I would even go so far as to say an obsessiveness.  I do not mean to suggest my OCD tendencies are remotely the same as what Emma must go through on a daily basis, that would be insensitive and dismissive of her very serious sensory and neurological issues, but I throw this out as something I’ve noticed and can relate to in a very superficial way.  Of course I could be completely wrong about all of this and anyway I have to hurry so that I can finish today’s crossword before starting my day.

For more on Emma’s journey through a childhood of autism and obsessive behavior go to:  www.Emmashopebook.com