Tag Archives: autistic children

Advice for Parents With a Newly-Diagnosed Autistic Child – By Rina

The other day I read a wonderful piece of advice written by Rina, a friend of mine, who is Autistic.  Rina’s thoughts were what I wish I’d been told when Emma was first diagnosed, so I asked Rina if I could share them and she, very generously, gave me permission.  Rina’s words also reminded me of Kamila and Henry Markram’s Intense World Theory for Autism, which was the first “theory” I read that finally made any sense to me or even remotely reflected back what I was seeing in my child.

Rina told me she self-diagnosed early in 2007 after reading “The Curious Incident of the Dog in the Night-Time and was formally diagnosed in 2009.  Rina wrote, “…knowing this about myself has been the revelation of my life. I am exponentially happier, healthier, and more confident since learning this about myself. Now I understand myself!” A little later as we were discussing this post, Rina said, “I was over 40 when I discovered I was autistic, so I spent a large part of my life just thinking I was broken, weird, wrong…” Then she wrote,  “I was bullied terribly in public school, like most of our tribe, it demolished my self-esteem, I was depressed and suicidal…but not now. I am autistic and proud, awesome and I know it!”

I read Rina’s advice to parents to Emma before posting here.  Emma typed, “It nicely states what is important.”  So with that endorsement, here you go and thank you Rina for allowing me to reprint your words.

“You know what? I have lots of thoughts, and I’ve had them for a while, about what I’d like to tell parents of newly-diagnosed autistic children. Maybe I’m talking out of my ass. But this is what I’d tell them. (assuming a boy in this example, for ease of writing…)

Your child is autistic. His brain is wired differently than yours. Autism is a disability. He will have challenges, but with the proper supports, he will have a happy, healthy, fulfilling life.

He will follow his own developmental schedule. Ignore the usual “markers”. Throw them out the window. They will be of no use to you.

Try to remember, always, that your son is experiencing the world in far more detail, and with far more intensity, than you are. It will take a lot of time for him to learn to regulate sensory input. His experience of the world (meaning sights, smells, sounds, peoples’ energy, conversation, others’ expectations of him) will overwhelm him on a daily basis. Have compassion for your son. He will be unlike any other child, even any other autistic child. If you pay close attention, with a compassionate open mind, he will tell you what he needs.

There are four things that can be of most help to your son, especially while he is very young: quiet, calm, consistency, and comfort. More than any recommended (and expensive) therapies, these will be of most help to your son. He may have repetitive and/or sensory-rich behaviors, such as rocking, squeezing a favorite toy, repeating favorite words–these help him to find some order in the chaos of the world–if they do not harm him or others, please allow him these behaviors, no questions asked. If they embarrass you–well, quite honestly, that’s your problem and you need to find a way to deal with it.

If your son is nonverbal or semi-verbal, trust me that he is looking for ways to communicate with you. Behavior *is* communication. If there is behavior that upsets you, that seems tantrum-like, there are probably reasons in the environment, there are things that are causing your son pain–again: try to make his world quiet, calm, consistent, and comfortable.

Consistency: I cannot emphasize how important this is. If days cannot be consistent, give your son warning whenever something unexpected is going to happen. I am an adult, and it is still one of my stated accommodations that I need a head’s up whenever something new comes along, or I need a break so I can process the change. If you’re planning to take him along to his sibling’s baseball practice, to stop by a friend’s house, to go to a yard sale, whatever…plan in advance, tell him about it, tell him what to expect and how long it will last. You know what, I think this is common courtesy. Understand what your son needs and be courteous by giving it to him!”


An Autistic Child is Murdered

Another Autistic child has been murdered by one of his parents.  This time it is a six-year old, little boy named London McCabe.  London joins a growing list of Autistic children who have been murdered in recent years.

A psychology professor who runs an “education” group for mothers of autistic children in California said, “quite frankly, I am surprised this doesn’t happen more often.”


“I am surprised this doesn’t happen more often.”

The casual nature of this comment stunned me.

She then went on to say, “These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated.”  This horrifying statement is untrue, but beyond that, the suggestion that if our feelings are not reciprocated, it makes sense that we become murderous, is to make us so narcissistic, so incredibly monstrous as to be unbelievable.   This is Bruno Bettelheim’s famous “refrigerator mother” theory reapplied to Autistic children and it is just as awful in this new version as it was in the original.

Most Autistic children feel love for their parents, just as most non-autistic children do.  Even when their parents behave horribly toward them, even when they’ve been treated with contempt, ignored, bullied, ridiculed and publicly shamed by those who say they love them, even then, most children still love their parents.  As they grow older many may have more complicated feelings of despair, abandonment, become distrustful, anxious and terrified.  The idea that Autistic children do not feel intensely is an outrageously, misinformed idea.  Just because someone does not reciprocate in a way non-autistics understand, recognize or expect does not mean the feelings do not exist. 

It is extremely disturbing to read such a statement coming from someone who is treated with deference and as though she is an authoritative voice on the topic of autism and Autistic people.  This professor is one of a number of people who has a degree in psychology and has made inaccurate, misinformed and mistaken statements about autism and Autistic people, yet none stop to ask what the psychological damage is to the Autistic children and adults they demonize with their incorrect statements, not to mention the impact such statements have on a misinformed public.  Unfortunately, few seem to be asking any questions about any of this or even bothering to find out if such statements are true, including the newspaper that published her comments.

There is an increasing number of Autistic men, women, teens and even younger people who are writing about their experience of life, their relationships and the world.  I am surprised when I meet someone in the field of autism who does not follow at least some of the blogs so many Autistic people are writing.  The Resources page of Emma’s Hope Book has dozens of links to Autistic people’s writing.  The first 28 blogs listed are written by non-speaking Autistics.  One of those people is my daughter, Emma.  After a presentation Emma gave in New York City a few months ago, she and I had the following conversation:

Emma:  I hope people will question what they have been told.
Ariane:  I do too.
Emma:  Horrible ideas about people, cause many to do terrible things…
A little later in that same conversation, Emma typed, “Worry and fear are fueled by furious words spoken harshly.  Humor soothes, shining sunny rays spreading hope.”

As the mother of an Autistic daughter who cannot communicate fluently with spoken language, but communicates beautifully by typing, I am continuously shocked by the inaccurate information that is rampant on the topic of autism and Autistic people.  Yesterday Emma typed, “Understanding that all human beings want connection is natural and fundamentally human.”  And last week Emma wrote, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

For people who do not have the ability to communicate with spoken language and/or have sensory issues that impact each individual differently, expecting them to respond the way people who do not have any problem speaking and have never been assaulted by their environment, is relying on a false idea.  It is this false idea that continues to misrepresent so many.  It is this false idea that serves to hurt Autistic people.

The psychology professor told NBC News that mothers do not have the experience of their love returned by their child.   “That is one of the most difficult things for mothers” she told the reporter.

If this were true, it would be hard.  Years ago, when I once believed a great many things about my daughter, that I now know are not true, it was an awful feeling.  But it is far worse to be that child who loves, but is believed incapable of love.  It is far worse to be so thoroughly misunderstood, to be constantly misrepresented in public, to be thought so problematic that people sympathize with the mother who murders you… that is far more horrific than anything I will ever experience in this world.

London McCabe

London McCabe

A Father’s Powerful & Extremely Personal Thoughts on Parenting

*This was what my wonderful husband, Richard, wrote as a comment on my post the other day.  I asked him if I could make it a post all on its own.  He gave me permission…

“Pain is inevitable, suffering is optional.”

There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.

But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude” I was yelled at. Punished. Spanked. Slapped in the face. Called awful names. Verbally abused. Degraded. Humiliated. And that happened nearly every day of my life until I left home at the age of eighteen.

My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.

Me? I didn’t really matter.

I waited a long time before becoming a parent. For years I swore I would never have children, perhaps because I was afraid I might behave like my own parents. And no child deserved that. When I met Ariane, something shifted monumentally in me, and I was suddenly eager to be a dad. I was 40 years old. Maybe I was finally emotionally mature enough to handle the enormous responsibility of parenting. I was ready to put someone else’s needs ahead of my own. Because for me, that’s what parenting is about. Service. My children don’t exist to fulfill my expectations, or make me happy. They exist in order to experience life and fulfill their destinies.

It is indeed hard to be a parent. I empathize and sympathize with all the parents who feel overwhelmed, who don’t have the resources or support to cope well with these tremendous responsibilities. I know life is hard for you. But trust me, no matter how hard you think you have it, your children have it harder. They sense your frustration, your discontent, your fear and panic, your anger and rage, your sadness and depression and hopelessness.

And quite likely, they feel themselves to be responsible. Maybe they are even told they are responsible. They feel guilt and shame. They try harder to make you happy. To not be so upset with them. Because they have learned–deep, deep inside–that they are “the problem.”

I’m talking about all children here, not just autistic children. For autistic children, multiply that angst level by a thousand. If you are autistic, you live in a world where so many people are telling you that you are broken, that you need to be fixed, that you need to be trained, conditioned to “act normal.” If you like to spin around over and over, or bounce, or rock back and forth, you are given the message, sometimes spoken, sometimes not, that this is “wrong.” And therefore, by extension, there is “something wrong with you.”

If you are non-speaking, or have difficulty with speaking, or with other physical issues, life is even harder, because you are being told that there is something REALLY “wrong” with you. Meanwhile, you’re trying to live in a world of “talkers” that constantly underestimate your intelligence and capabilities, who treat you like babies, who give you dirty looks, or tease you, or bully you.

You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”

And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model. Autism isn’t defined by all its wondrous capabilities, but by what is seen as lacking. Autism Speaks continuously fuels the bonfire of “wrongness” with every dollar they spend.

And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.

I so wish it hadn’t taken me so long to wake up. I so wish that I could erase all the damage I did to Emma, like subjecting her to the torture of ABA when she was only two years old. But I can’t change the past. I can’t take it back. What I can do, is speak the truth of what I’ve learned to whomever is willing to listen.

My Beautiful Husband and Daughter

Richard and Emma – 2011


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 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 Boy…”

Spinning boy

Spinning boy

And Then Suddenly Life Changes

Life has, quite suddenly, taken a dramatic turn.  Over the weekend I finally came to the decision that I cannot keep my business AND finish this book I’m writing AND work with Emma AND have the time to study this method of helping her, so that I can help others help her.  This feels like a good decision, the right decision, one I’ve been struggling with since last fall, but finally feel ready to take the actions to make this happen. So this morning as I looked around my studio, wondering how I was going to sort through everything and begin the process of dismantling a business and a working studio, I received a call from Emma’s school.  They are putting on a show next week and there have been some issues that required my presence.  As I’ve been going to her school every Tuesday afternoon in an attempt to teach some of the staff how to support her so she can write with them too, I left a little earlier than usual.

After school we met with the principal who asked Emma what she did for mother’s day, Emma wrote, “Mom helped me talk to my brother.”

“Oh!  What did you talk about,” the principal asked.

“We talked about whether Truman should have dropped the bomb on Hiroshima and Nagasaki,” Emma wrote.  Then she stood up and ran across the room, whipping her arms around like windmills before settling back in her chair.

It was decided that Emma needs to be in a classroom where she is being taught the same curriculum as her same age non autistic peers.  Except that she is not yet able to write with anyone at her school the way she can with me, so I volunteered to come in until someone can be trained.  It makes perfect sense.  But as Emma and I left her school yesterday, I thought to myself – what did I just agree to? It was one of those moments when the full weight of what you’ve committed to hits you and you think – am I going to be able to do this?  Really?  Can I do this?

Well, I guess we’ll see.  And for the next ten days I will get an interesting view into how her school does things.  And here’s the other thing…   There is nothing I could do that comes even close to being as important as finding a way for my daughter to communicate in a way that gives her greater access to this “awkward world” as she wrote the other day.  No book I might write, no piece of jewelry I might design, nothing comes close.

My life is suddenly no longer what it was.  I am nervous about going to her school with her and essentially being her one on one aide, but I am also really curious to see how it goes and I’m excited to see her in a class where, I’m hoping, she will be challenged.

Before we left school yesterday, the principal asked Emma whether she preferred being referred to as a young lady with autism or an Autistic young lady, Emma wrote, “I am an Autistic girl and proud of it.”

The principal smiled and asked, “Why do you prefer being called Autistic?”

“Because autism is part of me and can’t be removed,” Emma wrote.

“That makes sense,” her principal said.

I told the principal and assistant principal how fortunate we are that I have a number of friends who are Autistic, one of whom is like a sister to me.  And then Emma wrote, “They are my Autistic family.”

How lucky are we?

The journey continues…

Emma and Me

Emma and Me


Yesterday I wrote a post, Your Child’s Been Diagnosed.  Now What?  There are so many things to add.  But something I wondered often during those early years was  – what good is a diagnosis if the “interventions” the professionals suggest and say will help, do not?  Now this is not everyone’s story, but it is ours.  All the recommended “interventions” did little, if anything, to actually help her.  In fact, I would argue that some of the interventions we agreed to, actually harmed her self-esteem.  And the general rhetoric, disguised as factual information, surrounding autism, encouraged her to feel damaged and at fault for the suffering of others.  No child should feel they are the cause of other’s pain and suffering.  And yet, so many do.

Once we began looking for schools that might be a good fit, we were even more horrified.  The choices were not – which one is best? – but became – which one will not harm her?  This shouldn’t be a parent’s guiding question when looking at schools, but for us, it was.  Will the staff be kind to her?  Will they be patient?  Questions like – will she learn?  Will she be taught science, math, english, social studies?  Those questions quickly gave way to – will she be harmed?  Are cameras monitoring what goes on in the classrooms and hallways?   Do they use isolation rooms?  Do they allow teachers to use restraints?  The best case scenario became less about education and more about physical safety and finding a place that did not harm or try to force compliance.

Academics were stripped down as it was “shown” that she could not understand basic concepts.  Because she could not read aloud, she was given picture books.  Because she could not answer the questions asked, the questions were simplified and simplified more and more and more until it was concluded she didn’t understand.  Because it was determined she could not understand a simple story about a boy and his dog going on a trip to visit his Grandmother, she was given less “complex” stories.  She was given “sight” words that were repeated for months and months, even years.  Billy Goat’s Gruff became the center piece for a curriculum that continued for three years, despite our disbelief and protests.  “Oh but we examine all the various characters in the story,” we were assured.  “THREE YEARS??” we responded.  “For three years?”  “Yes,” we were told with pitying looks and the hubris and bravado I’ve come to recognize from those who are convinced they “know” and understand “autism” and therefore my daughter.

Some of the worst offenders are those who have dedicated their lives to autism.  Those who are so sure they know, and as a result are no longer curious or interested in learning more.  Those are the people who are asked to give presentations at Autism Conferences, they are the ones who write books, that parents, not knowing any better, buy.  They are the ones we listen to and slowly as their voices are the loudest and most plentiful, we begin to doubt our instincts, we begin to soften our protests, we begin, slowly, slowly over time, to believe them.  Our ideas about our child are whittled away.  Our instincts are pushed aside to allow for those who know better, who have been doing this for “twenty years,” who have worked with “this population” and who, from having spent decades among children just like mine, know things I cannot possibly grasp or understand.  (This, by no means, describes everyone, but it does accurately describe a great many, and sadly, often those who were in a position with the most power.)

We parents are told to see our children for what they are: Intellectually impaired, socially inept, incapable, lacking and unable to understand the most basic concepts.  My child, as a result was shuttled off to learn how to tie her shoe laces and wash her face and hands.  While life skills are certainly important they should not take the place of academics.  So many of us are consoled with the idea that at least our child will be able to dress themselves, or not…  in which case we envy those parents who have children who can.  Our focus turns from philosophy, an exchange of ideas, history, english, poetry, literature, science, social studies, math and geography, to making sure our child can brush their teeth.  Until one is accomplished, it is thought, the other cannot be introduced.  A child who cannot dress themselves, surely cannot be introduced to Kant or Socrates or a poem by Yeats.

“Hey Emma, I’m curious, how is it that you know about WWII and Nazi Germany?”

“I hear you, Nic, and Daddy discussing,” Emma wrote over the weekend.

“Do you think it was right for Harry Truman to drop the bomb on Hiroshima?” my son asked.

“I have to learn more to say one way or the other,” Emma responded.

“Do you want to hear some arguments for and against the bombing of Nagasaki and Hiroshima?” N. asked.

“Yes, I can better understand using the bomb if you tell me more,” Emma wrote.

There is so much more to say…

Emma struck this pose while waiting for the school bus - May, 2014

Emma struck this pose while waiting for the school bus – May, 2014


“I want to write about being an Autistic girl.  Sometimes difference isn’t easy.  Easiest is to be like everyone else.  Trying to fit in when you act and talk like me only makes everyone more aware of how I am not the same.  Blending in isn’t an option for me.  I stand out anyway. ~  Emma Zurcher-Long

Emma’s words, written last night, reminded me of the TED talk Sir Ken Robinson gave eight years ago, in 2006.  A talk that more than 26 MILLION people have watched on the TED channel, more than 6 million on Youtube

“…If you’re not prepared to be wrong, you’ll never come up with anything original.” ~  Sir Ken Robinson

He also said later in this same talk,  “…the consequence is that many highly talented, brilliant, creative people think they’re not, because the thing they were good at at school wasn’t valued, or was actually stigmatized. And I think we can’t afford to go on that way.”

He wasn’t referring to children with a different neurology.  He was referring to the NON autistic population!  Now think about his words in relation to those with a different neurology…  “wasn’t valued, or was actually stigmatized.”  THIS, this is something I think about all the time.  What if… what if we lived in a society that actually valued Autistic neurology?

We need to radically rethink our view of intelligence,” Sir Ken Robinson said.  He also said, “…creativity — which I define as the process of having original ideas that have value — more often than not comes about through the interaction of different disciplinary ways of seeing things.”  An Autistic brain is all about seeing things differently from the majority of the population.  Why are we trying to temper this?  Why do we spend so much time, energy, effort and money on trying to make Autistic people like their NON autistic peers?  Doesn’t this seem like a massive waste of time?  It does to me.  And this isn’t even taking into account the trauma we are inflicting on a group of people who canNOT be like their non autistic peers even if they were motivated to be.  

Sir Ken Robinson goes on to tell a story about a girl who is failing in school.  Her teachers are complaining, she can’t stop fidgeting, she’s doing poorly in all subjects and the mother takes her to a specialist who after listening to all the things the girl is doing wrong, tells the girl he has to speak with her mother privately and together they leave the room, but not before he turns on the radio.  “And when they got out the room, he said to her mother, “Just stand and watch her.” And the minute they left the room, she was on her feet, moving to the music. And they watched for a few minutes and he turned to her mother and said, “Mrs. Lynne, Gillian isn’t sick; she’s a dancer. Take her to a dance school.”

That girl, Gillian went on to graduate from the Royal Ballet School “and founded her own company — the Gillian Lynne Dance Company — met Andrew Lloyd Weber. She’s been responsible for some of the most successful musical theater productions in history.”

I’m not saying all of our kids will become famous dancers, heading up their own companies, but what I AM saying is that it’s time to rethink how we think about autism and our Autistic children who will one day grow up to be Autistic adults.  We can crush them with the insistence they conform, despite all evidence suggesting they cannot or we can encourage them to flourish.  We can insist they communicate like their non autistic peers and subject them to endless hours of therapies created to train them in how to be indistinguishable from their peers.  OR we can find other ways, creative ways to help them be all they can be.

Sir Ken Robinson ends his talk, which I hope you’ll watch if you haven’t already, by talking about the gift of human imagination and using it wisely.  He says, “the only way we’ll do it is by seeing our creative capacities for the richness they are and seeing our children for the hope that they are.”

“Seeing our children for the hope that they are.”

This, it seems to me, is at the crux of everything.  Every single child born, no matter how different they may be from the majority of people, must be approached with this in mind.

“Blending in isn’t an option for me.  I stand out anyway.” ~  Emma Zurcher-Long



The Dreaded IEP Meeting

Those annual IEP (Individualized Education Plans) meetings all parents of children with “special needs” attend are something I used to dread.  Meant to ensure our children are given the supports and accommodations they need, I went to our first meeting with eager anticipation.  This was where, I thought, we would be able to work with a team of people all of whom had the same goal for our child – getting and giving her the best supports and accommodations available so that she could flourish.

What quickly became apparent however was that this was when her team would write a series of bullet points describing all that was wrong with her.  All the ways in which she fell short, all the ways she demonstrated how incapable she was, were described in detail, documented and added to her growing file.  This was the time, once a year, when I would sit and listen to that itemization, fighting back my tears.  The few things said during that first IEP meeting that were supposedly positive regarding spoken language, were written as a criticism, “…uses gestures to whine or protest.  She is described as shouting or vocalizing to gain attention.”   I would leave these meetings feeling hopeless and filled with the sort of despair I described in yesterday’s post, Dare to Hope.

Today, almost ten years after that first IEP was written, Emma writes by pointing to letters on a letter board and more recently with both her RPM teacher and me, she is typing on a bluetooth keyboard attached to an iPad.  No one touches her as she writes.  Emma has written before about the words that come out of her mouth.  I will quote her, since the way she describes what happens to her when she speaks is far more descriptive and eloquent than anything I might write.  Emma wrote yesterday in her IEP meeting, “I try to talk, but the words just come out wrong.”  A few months ago she wrote how she wished people would, “listen to my writing voice, but they listen to my talking voice instead.”

As always, I asked Emma if I could write this post about her first IEP, as an example of the assumptions made and how far off we were in our thinking as well as a document for those of you who are at the beginning of all of this.  Emma generously agreed that this was a good idea and wrote, “know that just because a kid doesn’t talk or talks like me, doesn’t mean the words that come out are the same words that are in their mind.”  Regarding her so-called “behaviors” which Emma describes as a body/mind disconnection, she wrote,”I hope to better control my misbehaving body, but sometimes it won’t obey.”

A few weeks ago I asked Emma if she could remember when she was very young.  She wrote, “Yes, my body could not behave because I was not able to cope… too many competing sensations.  I couldn’t make sense of everything that did not connect me with my irritable body.”  Now keeping her words in mind, read these words taken from her IEP, dated 2005 (Emma was three years old):

Emma avoids “looking others in the eye, does not answer when people talk to her, does not get along with other children, seems unresponsive to affection and shows little affection towards people, withdrawn…”

“The skills that she does not show evidence of include:  does not yet engage in make believe play, does not yet match objects, complete interlocking puzzles, repeat digit sequences, identify body parts or show understanding of number concepts.  She does not yet point to body parts, clothing items, prepositional commands, or know size.  She does not participate in story telling or give her full name or use pronouns… and shows limited interest in other children.”

The report goes on to say:

  “She does not vocalize when another person calls her name.  She produces a variety of consonant sounds.”

When I read Emma’s words and the way she describes some of what was going on for her and compare her words to the words written on her IEP, it is impossible not to see the massive disconnect between what was actually going on and what all of us assumed was going on.  It is from those assumptions that her goals were then created.  Goals such as:  “Emma will increase communicative intent via word and/or gesture to consistently request object article/toy/food (8/10) trials.”  “Emma will maintain eye contact and prompt (8/10) trials.” “Emma will use at least 10 objects functionally, 4/5x”  “Emma will imitate 1-2 word utterances during play, 4/5x” the list goes on, but the goals are all either regarding compliance and/or acting according to non autistic standards of behavior using spoken language.

In contrast, yesterday we went to Emma’s IEP meeting with Emma, who contributed her own thoughts and opinions about the goals that were set by writing on the keyboard I held for her.   At one point she wrote, “it’s very good having time to go over goals.”  And when asked about the efficacy of being asked to use a mood chart, she wrote, “Sometimes I feel many things at once.  Would the mood chart work for you?”

Can I just say how proud I am that my daughter asked this question?  And by the way – No, Emma, being asked to chart my moods or anticipate what my mood might be would not work for me.  I think it would actually really piss me off if I was asked, while feeling both upset, sad, frustrated, maybe a little frightened and annoyed  to use one word to describe what I was feeling and then was asked, “What’s wrong?” when I could not rely on spoken language to adequately express myself and no one could support me in the way I needed, so that I could write either.

What was wonderful about yesterday’s IEP meeting was that her staff is dedicated and completely committed to listening to Emma and learning from her what it is that she needs and wants.  Everyone was kind, thoughtful and patient and in the end we have an IEP that reflects our goals for Emma, but more importantly it is a reflection of her goals for herself.

Emma the year before that first IEP

Emma ~ 2004, the year before that first IEP


Autism Graphics

In the last two days I have been sent two different graphics supposedly about autism, but that upon reading take my breath away because of their blatant inaccuracies and biases.   The last one was in the shape of a pyramid in a shade of blue I’ve come to despise with the heading, “Impairment in Imagination” and I just wanted to cry.  Impairment in imagination?

You have no idea how much I wanted to hit the delete button and scream or bite someone, which always reminds me of a scene in the British comedy, Shawn of the Dead where the main character’s mom is bitten by a zombie, but she doesn’t say anything until her son asks, “Mom, are you okay?  Did he get you?”  And the mother smiles weakly, as blood gushes from her arm and replies, “Well, he was a bit bitey.”  Hilarious.  Only what I was feeling when I read “Impairment of imagination” was not hilarious.  No.  Not at all.

Underneath that unfortunate heading was written, “Deficits in flexible thinking regarding interests, routines, perspectives and rules.”  Two key words are used in these first two sentences “Impairment” in the heading and “deficit” in the second.  The first is just incorrect and the second is a stereotype that while it may be true for some people it certainly cannot be stated as fact for ALL people.  I purposely did not say “Autistic” people because rigidity and a reluctance to see another’s point of view are things many human beings have trouble with and this is not something that can be pinned on one specific neurology.

Below this, the graphic reads, “does not understand other people’s points of view or feelings.”  Again I could list a number of non autistic people in the news who would certainly be terrific examples of this sentence.  To suggest that this is a defining characteristic of Autism is inaccurate and plays into the whole “lacking empathy myth” that so many believe as fact about Autistic people.  Please read Drs Kamila and Henry Markram’s Intense World Theory of Autism for another thought regarding autism.  And by the way, the Markram’s, both of whom are neuroscientists, call it a “theory” because they understand that it is not scientifically proven fact, but a theory they developed and continue to tweak as they learn more.  They are highly regarded, acclaimed, well published and the two people working in the field of autism whose work I believe will eventually change how autism is viewed.

The next line of text on the graphic reads, “Agitated by changes in routine.”  This line would actually be fine if it weren’t for all that precedes it.  But I would also suggest that this line could be said about all young children.  And in the end this is my criticism of the information that is being given to people about autism.  Autism as defined by a list of deficits that added up does little other than to create panic in parents of Autistic children.  I’ve written about this before ‘here‘, ‘here‘ and ‘here.’   These posts are just a few examples of things I’ve written describing what fear did to me and why terror does not motivate people to make good decisions or help them decide how they can best support and encourage their children to be all they can be.

This particular graphic goes on with headings of:  “Impairment in Social Relationships,” “Impairment in Social Communication” and at the base of the pyramid the heading says:  “Additional Difficulties” where they list, among other things, “Appears to enjoy being held/restrained…”  NO!  This is absolutely wrong.  You cannot write that someone “appears” to “enjoy” “being restrained” thereby justifying sadistic behavior done by staff/therapists/parents/ANYONE.  And again, I  want to SCREAM!  Who is writing something like this?  This is a graphic that is being used by a school for Autistic children.  It is a graphic that is stating things as though proven fact.  A graphic that parents, children, educators are seeing.

We have to ask ourselves – WHAT ARE WE DOING?  How is it okay to publish such statements as though they are fact about a neurology that the best neuroscientists in the world are baffled by?

Please.  If you are confronted with a graphic that is anything like what I’ve just described, do NOT share it.  Do NOT believe that these things are a fact, just because they are written as though they are.  Do not add to the misinformation by repeating it.  DO NOT.  It is statements like this, one page info graphics written by non autistic people, who are not neuroscientists, who seem to know very little about autism that cause tremendous damage to the Autistic population.

We must all become critical thinkers when it comes to information about autism. We know very little about the human brain.  The best and smartest neuroscientists in the world are working hard to gain a better understanding. Most of what we are being told are theories, please let’s not treat these as fact.

Emma ~ 2010

Emma ~ 2010

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Unstrange Mind – Schools Supporting the Idea that…

When Time Stands Still

After publishing yesterday’s post, “So Many Kids Are Just Like Me” I added a video of Emma writing those words and more.  I hadn’t added it when I first wrote the post because Emma hadn’t given me permission yet and we were still trying to get the video uploaded, ran into problems with the picture being condensed and other issues.  In any case, for those who want to view it now, you can.  On a personal note, I’ll just add that this video makes me feel very squirmy because it does not capture the playfulness we usually have together, and I’m hyper aware of the anxiety I was feeling while we were taping…  Also the video does seem to be taking longer than it should to load, at least it is on my computer, but Emma has said she’d like to tape more, so I’m hoping we will get better at uploading as we continue.

My friend Alex commented on yesterday’s post about the impact of watching Emma write, as opposed to reading about it.  It was exactly for this reason that we decided it was important to post the video.  There is nothing like seeing in real-time another person writing this way.   No amount of words, no matter how well phrased can describe this process the way watching it in real-time does.

I will never forget that moment at the Autcom Conference in 2012 when I watched a boy, younger than Emma is now, write such insightful and profoundly wise comments  that his mother then read out loud during a presentation.  It was that moment when I thought to myself – maybe, just maybe my daughter has thoughts like this, and we just have to find a way for her to express them.  It makes me cry with gratitude thinking about that moment not so very long ago.  No one could have convinced me then that just a year and a half later we would be where we now find ourselves.

It is inevitable that there will be people who say things like, “well it takes too long” and  “how can this work in a class room?”  But as a parent who has wanted nothing more than to know what my daughter was thinking, who believed despite what the majority of people believed and were telling us that maybe, just maybe they were wrong, watching Emma write is when time stands still.  The excitement I feel when she begins to point to a letter is like nothing I’ve ever experienced.  Each letter she points to is a tiny gift wrapped in beautiful paper, as the paper peels back to uncover the word inside the world and everything in it stops.  It is a sensation like none other.

To my daughter, who works so very hard to accommodate my need to hear her experience of the world put into words, I thank you.  Every single time you do, even though you feel it’s tedious, I thank you.  Gratitude does not come anywhere near my feelings.  There are no words for this.  And I know this is a tiny glimpse into what you, Emma, feel every time you are asked to put into words your thoughts.  Words can’t come close…  finally I understand…

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

“So Many Kids are Just Like Me”

“I am smarter than most people think.  So many kids are just like me.”

Emma wrote this yesterday in response to my question, “What would you like teachers, who want to teach Autistic kids, to know?”

There are a number of young people who write to communicate things that they cannot with spoken words, just as Emma does.  Many of them are starting blogs of their own, some have parents who have blogs and like Emma they are beginning to take ownership of those blogs.  On the “Resources” page here on Emma’s Hope Book I’ve listed a great many blogs beginning with those written by non-speakers, or people who write to communicate.

When Emma wrote “so many kids are just like me” I thought about how when Emma was diagnosed I knew of none (of any age) who wrote to communicate.  The entire concept was completely foreign to me.  In fact, and I hate admitting this, I hadn’t spent any time considering neurology, literacy, language, or which parts of the brain process language.  I remember being confused by the idea that someone who didn’t speak, could still read.  I’ve come a long way!

I would like to take the opportunity to list here just a few blogs that I personally know of where people around or near Emma’s age are writing to communicate.  This is by no means a comprehensive list and I welcome any additions, which I will add here and on the resources page as they come in.

Oliver – Day Sixty-Seven
Philip – Faith, Hope and Love… With Autism 
Cindi’s Blog
Henry Frost – Ollibean
Matteo – Matteo’s Loving Blog
Ido – Ido in Autismland
Joey Lowenstein
Nick – Teen Typer

“So many kids are just like me…”

Emma with her friend Henry ~ January 30, 2014

Emma with her friend Henry ~ January 30, 2014

I Used to Believe…

The degree of arrogance displayed by more than a few who claim to be “experts” with decades of hands on experience in the field of autism is absolutely staggering.  Their arrogance is only rivaled by their mindset of assuredness. They are unwavering in their absolute knowing about a neurology that continues to baffle the best neuroscientists in the world.  These practitioners not only speak from a place of “authority” they are imperious, contemptuous and profoundly scornful of any who suggest they might want to consult with a few people who are actually living their lives with the neurology these so-called experts claim to understand and know all about.

We have run into more than a few of these professionals over the years.  These are the people who fill me with fear.  They come into contact with hundreds and thousands of children over their decades of “expertise” and it terrifies me.  They win grants and are paid to speak at conferences.  Their opinions are sought by a great many.  They swagger about with their self importance, wearing their years of working with the Autistic population as though it were a badge of honor.  They think nothing of grouping an entire neurology into a small, convenient box labeled “autism”.

They smirk and posture and plaster their walls with their many credentials and degrees.  They make sure everyone understands exactly how many years they’ve been working in the “field.”  They say things like, “autistic children are…” accuse those they disagree with of “falsehoods” and go on at length about how they know what “autistic children” want, need and care about.  They are profoundly dismissive of those who actually ARE Autistic and who dare question or disagree with them.  Instead of listening to the very people they claim to know so much about, they silence with words of contempt.  They attack.  They strike out, bring in reinforcements of like-minded colleagues.  Sometimes they even target someone, almost always someone who is autistic, and try to do damage to them by contacting their employers, or those they have professional contact with.

I used to be shocked that such people would choose to be in a profession where the people they are supposedly wanting to help, end up being the very people they silence and hurt.  It used to surprise me when I would read comments by people who have no trouble using language either written or spoken to get their point across, dismiss and question someone who does not enjoy the same ease with which they do, to communicate.  I used to be naive enough to believe those calling themselves an “expert,” and had degrees suggesting study and dedication in their given field was further evidence of their title.

I used to believe in a great many things.

*This post is not about any one person, but about the dozens of people I’ve met over the years who fit the above description.  There are many people, both autistic and non autistic, who have dedicated their lives to autism, who (thankfully) do not fit this description.  They are open to new ways of thinking, they are actively listening to those who have different experiences than their own.  All of them are engaged in learning, discovering, uncovering more information and examining what they think.  They are operating from a place of humility, and to those people I am profoundly grateful.

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Cart Before the Horse Research ~ By Michael Forbes Wilcox

“No ABA”

A few days ago I wrote about a conversation Emma had where she said she’d like to open a center she would call, “Emma’s Hope Care.”  You can read that piece ‘here‘.  In addition to writing that the center’s philosophy would be “no Autistic child left behind”, she wrote, “no behavior management.”  In response, a commenter asked Emma “What would you do to help children cope with their feelings in our society?”

I showed Emma the comment and asked her to elaborate a bit more on her words – “no behavior management” before asking if she would answer the commenter’s question.

This conversation took several sessions to complete.

A:  Hey Em.  I was wondering if we could talk about Emma’s Hope Care.  Would that be okay?

E:  Yes.

A:  What did you mean when you wrote “no behavior management”?

E:  No ABA.

A:  That was a long time ago, when you were just two years old.  We stopped when you were four.  Do you remember the ABA you had?

E:  Yes.

A:  Will you tell me your experience of it?

E:  I was treated with mostly kindness, but the therapists could not see beyond their training.  I learn quickly, but am not able to reply with words that sound right to another.

Worry becomes everyone’s focus.

Real learning happens when no one notices.

The goals waste away.

Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.

During a separate session Emma answered the question, “What would you do to help children cope with their feelings in our society?” from the Conversing With Emma post.

First cope with your own feelings.  Second listen to the child.  Provide them with patience, accepting their feelings as valid and respecting that this will change as they grow older.

Emma during the ABA years...

Emma during the ABA years…

How We Discuss Our Children

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

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

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

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

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

Em on her pogo stick copy

We Are Like Your Child: The Blog

*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