Tag Archives: fear

Giving Hope…

During those first few years of Emma’s life, when we were so exhausted and everything was confusing, well-meaning people made pronouncements about Emma’s future.  If I had to choose one emotion to describe my feelings during those early years, it would be terror…  I was terrified.  The kind of terror that keeps you up at night and then, once you’ve managed to lose yourself in the welcome relief of sleep, you dream about elevators swinging in midair, doors that open up to emptiness, running to places only to find you keep ending up where you began…  and then… and then you wake up with a jolt of optimism, for a brief, few seconds you have forgotten your terror, only to have it come surging back, dispersing any wisps of residual optimism from days now gone…  You’re left bereft, empty, alone and yes, grieving… Grieving for that time when terror wasn’t something you were intimate with…

What I wanted during those early years, what I wanted later when Emma grew beyond toddlerhood, when she entered adolescence, all I wanted was for someone, anyone to say –  Don’t believe any of these people.  They have no idea what they’re talking about.  Don’t spend your time on the internet researching autism.  Don’t listen to organizations with Autism in their title, but that have few or no Autistic people occupying prominent positions in their organization.  Don’t believe any of those people who talk about “recovery” and liken your daughter’s neurology to disease or buy into therapies whose main goal is to make your daughter indistinguishable from her non Autistic peers.  Reject ALL of that.  Being able to speak isn’t the only way to communicate.  An Autism diagnosis isn’t a metaphoric nail in a coffin.  

I imagine those years of terror and how different our lives would have been had I met some of the people I now know.  People I have met on the internet, through their blogs, at conferences such as AutCom and the ICI Conference in Syracuse.  Conferences where I left feeling elated and euphoric because I witnessed all that was possible and not all that wasn’t.  How can we move beyond the current conveyor belt of fear that only serves to pad the pockets of Autism businesses run and created by non Autistic people, who do not seek out the active involvement of those very people they insist they are dedicated to help?  How do we dispense hope and what is possible amidst the maelström of deficit thinking?  How do we care for families new to all of this, those families whose children will be greatly affected by their parent’s terror?

We have to give eye-witness accounts of what is possible.  We must have resources available to families that will counter the predominantly negative views of autism.  Resources that do not condemn the parent or the child.  Resources that do not encourage terror, but offer hope and possibility.  Ideally I would have been given the list of books  I have on my “Resources” page and actual copies of these four books:  Autism and Representation Edited by Mark Osteen, Autism and The Myth of the Person Alone Edited by Douglas Biklen, Inventing the Feeble Mind: A History of Mental Retardation in the United States by James W. Trent Jr.  and Representing Autism by Stuart Murray.

Parents need support so they have the energy, patience and optimism to give their child the support and encouragement they need.  Therapists, professionals, educators, experts who are making a living working in the field of Autism must understand the importance of offering hope.  Hope based in possibility and reality.  No one is served by being terrified.  The only people who will be adversely affected if we stop the terror surrounding autism are those whose businesses thrive on such beliefs.  And to all those businesses – I say – Good riddance.

LifeThe possibilities are endless… 

Where There’s Anger There’s Fear

It’s taken me decades to figure out that whenever I am angry, fear is lurking.  All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate.  It’s still not the first thought I have when I am angry about something.  It’s not even the second thought.  In fact, I’m lucky if it’s something I can remember at all when I’m angry.  Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were.  But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go.  It was the fear that made itself known to me; the anger was far more subtle and insidious.

“When you sense a threat  your mind generates fear and anger.  The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat.  What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness

I understood things like the above paragraph.  In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined.  What did the future hold for my daughter?  How was she going to get through life?  How would we be able to keep her safe?  How would she fend for herself?  Would she be able to fend for herself?  Who would take care of her once we were gone?  Fear.  Fear.  Fear and more fear.  And then, without even realizing it, I would find myself furious.  Enraged.  And my rage found the perfect target.  Autism.  Autism was what I was furious with.  Autism was what the problem was, so it stood to reason that if I could remove it, all would be well.  So this is what I set out to do.  Except that my daughter happened to be Autistic.  But if I didn’t say it that way I could continue to separate the two.  I could continue to tell myself I was fighting the autism and not her.  I could continue to believe that my anger with autism would not affect her.

“Anger is the natural emotional reaction to what the mind and imagination are doing.  The way to overcome anger is to change  how the mind imagines stories and how much you believe them.  When the mind imagines painful scenarios you naturally produce anger.  To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger

That quote more than any other sums up exactly what happened.  I had to change the story that my mind was imagining.  Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch.  I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one.  I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant.  I had to be open to other ideas about it.

For me that began with reading books.  First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog.  From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships.  People I have grown to love deeply.  I had to find people who were non-speaking, or spoke intermittently.  I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people.  And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities.  The very things I had been told could not, would not be possible for my child.

Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning 

A and E_2185And so I found I had a choice.  I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up.  Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice.  I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it.  Because my fear has me running away and my anger has me shouting, either action keeps me apart from others.  I have learned that the answer to both is to do something else.  And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.

Autism Awareness ~ Not Fear

In the spirit of “Autism Awareness” month, I’ve decided to write at least a few posts this month devoted to the kind of “awareness” I would like to see more of.  Awareness can be subjective and the awareness being pushed, this month in particular but, most of the time is usually not the awareness I wish I had been given when my daughter was diagnosed almost nine years ago.  I believe awareness should help us, not make things more difficult.  In the best case scenario, awareness gives us options and makes us feel empowered to make better decisions.  Awareness is the opposite of ignorance, yet more often than not, when it comes to autism, so-called “awareness” becomes an abettor to ignorance.  This is not as it should be.  Awareness, in its true form, is a good thing, even if not easy, even if becoming aware is painful, even if awareness makes us uncomfortable, it (hopefully) leads us to act in a more thoughtful manner.

E., whose blog The Third Glance, is someone I urge everyone to follow.  I first became aware of E.’s blog shortly after I found Julia Bascom’s blog Just Stimming.  So within a 48 hour period I read Julia’s blog and then found E.’s blog and read My Cat is My HeroExecutive Function and Words, which describes in beautiful detail the pitfalls and distractions of having a conversation with a group of people.  Growing Up Autistic where she writes,  “Anything related to my Autism was punishable, regardless of the actual magnitude or relevance of the offense.”  A little farther along she writes, “I am Autistic. I was abused for it. My whole person was trained to be invisible and I was taught that I didn’t matter.

I read E.’s blog and I learned and my awareness increased and I started to see how things I’d been told, things I’d been made “aware” of were actually incorrect. E.’s blog was the kind of awareness I needed.  It was the kind of awareness that helped me make different decisions.  This was the sort of awareness that helped me understand, helped me take more informed actions, helped me seek out more information.   Isn’t that what “awareness is really all about?  Isn’t awareness suppose to be about gaining knowledge?  I want knowledge.  I don’t want knowledge disguised as fear.

Em, having appropriated my black shawl, takes a morning stroll in Tampa


Autism Awareness?

It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning.  It no longer is a word of benign information, but instead is a word of caution and fear.  I do not think this is a mistake.  I know it’s cynical of me, but I think Autism Speaks, the single largest organization involved in Autism and the creator of the “Autism Awareness” campaign, chose their wording carefully.  I’d like to think I’m giving them more credit than they deserve, but for a company that spends more on PR than they do on actually helping families and those who are Autistic, I don’t believe I am.

My awareness of autism has dramatically changed over the years.  It has changed because of the information I’ve found and been given.  In the beginning, my information came from books, autism organizations, various professionals, a couple of neurologists, our pediatrician; surprisingly the more “credentialed” the person was, the more likely they were to admit how little they actually knew about autism.  In retrospect this was my first real lesson in awareness – beware of organizations and those who believe they “know” all about autism, whether that is the cause or which specific methodologies, treatments or therapies your child will be best served by, because they do not know, despite how vehemently and persuasively they may speak.

As time went on, I became increasingly aware of my own misery.  The common misery supposedly shared by us parents, dominated the conversations surrounding autism.  I became fixated on the “fact” that autism was the cause of my misery and set about removing it from all our lives.  This is where awareness took me.  This was what I knew and understood.  But this is not the sort of awareness I want to be a part of.  This is not the kind of information I wish I’d gotten, nor is it the information I hope other parents and families will receive.  Those first few months after receiving the diagnosis are critical.  How we talk about autism and by extension our Autistic child changes all that we then do and where we focus our energies.

Autism did not cause me to be miserable.  I was concerned and I was scared, but my daughter’s neurology was factually not what frightened me, it was what I was being told about her neurology that terrified me.  Had someone said to me when we were still trying to get her out of diapers when she was seven years old – “it’s going to be okay, here are a couple of different things you can try, but remember most people do get out of diapers, eventually” I would have felt a little calmer.  Had someone said to us when our daughter was six years old, “read to her age appropriate material, teach her age appropriate lessons” I might have felt confused, I might have had a great many questions, but I wouldn’t have felt the fear I felt when we were informed she could not possibly be placed in a school with her same age peers.  Had someone said to us when we first received her diagnosis, “presume competence, she can and will learn, but she will learn at a different pace, she will learn differently than you might expect” I might have felt concern, but I would not have felt the kind of despair I felt when I questioned whether she was capable of learning at all.

If we want to have more awareness about Autism then let’s have it come from those who are actually Autistic.  Because if you are like me, these are the people who will change your views and shift your mind away from the “tragic” to the far more helpful information that might actually help you help your child.  The kind of information that opened our minds to different forms of communicating, different ways of learning, all those things that have actually aided us in helping our daughter.  Our judgments about her neurology and all it meant to us and her, did not help us do anything but feel more fearful and miserable.

Below is a small list of people I know and am in touch with.  I’ve provided a link to their blog, book(s) or film to each of their names.  I will feature more people who have helped me in my growing awareness during this month of April.  I’ve separated those who can speak, but depending on the circumstances lose speech, with those who mostly do not speak, but ALL communicate.  Want to become aware?  Read their words.

Non-Speaking Autistic:

Amy SequenziaBarb Rentenbach, Peyton Goddard, EmmaTracy Thresher, Henry Frost, Tito Mukhopadhyay


Ibby Grace, GareethKassiane, Paula Durbin-Westby, Landon Bryce, Julia Bascom, E., Renee, Judy Endow, Michael Scott Monje Jr.

The Tug of The Unknown

Ever since Em was first diagnosed I have looked to others to tell me what was best for her.  I have read countless opinions.  I have read hundreds of articles written by self-appointed Autism experts, educators and therapists.  I have listened to organizations, I have consulted doctors, neurologists and developmental pediatricians.  Emma has had quantitative EEGs, hearing tests, vision tests, colonoscopies, endoscopies, x-rays, and more hospital visits than any child her age should have to endure.  She has been prodded, poked, examined, questioned and discussed.  She has had more “professionals” come and go in her short life than I have in my entire 52 years.

A year ago I began meeting Autistic adults and what they were saying and describing first hand wasn’t what all those experts, doctors, educators and therapists had been telling me.  In fact what Autistics were telling me was often in direct opposition to what all those other people said.  The more I listened to what Autistics said and how they experienced their childhoods and life now as adults, the more I saw how wrong most of the professionals were.  It’s not that any of the Autistic people tried to predict what my daughter would be like as an adult, or that I came away believing I’d just met an older version of my daughter, but I’ve gained a clearer picture of autism and I am not as afraid as I once was.  As a side note, I have yet to meet a single Autistic adult who has assured me my daughter would be just like them, quite the opposite in fact.  Each and every person I’ve personally been in contact with has made a point of saying they are not representative of any Autistic child.

When I went to the Autcom Conference in Maryland last fall I met a great many older Autistic adults.  People who are in their 40’s and 50’s, some had been institutionalized, others lived in group homes, some lived with their aging parents, others lived independently, but all were Autistic and while it was surprising to meet so many (the hidden Autistic adults that our society knows almost nothing about)  it was a relief too because the fear I had and to a lesser degree still have about autism falls away the more time I spend with those who are Autistic.

My fear is about the unknown.  My greatest fears are those I create in my mind.  I have to remind myself of this on an almost daily basis.  I have tremendous fear.  I have always been fearful.  Long before I had children or got married I have lived with fear.  Fear of failure, fear of success, fear of relationships, fear of rejection, fear of abandonment, fear of being hurt, fear of hurting others, fear of saying the wrong thing, fear of life, fear of being.  You name it and I can figure out a way to fear it.  I have mornings when I wake up and feel fear like a second skin shrouding my body and mind.  There are days I cannot shake it.  There are days when the best I can do is get up and just put one foot in front of the other.  There are days when I cannot even acknowledge how scared I am.  A good day is when I keep doing the next thing that needs to get done and not say or do anything hurtful to anyone who crosses my path.  Those are the days when the image of myself is that of being covered in a thick cloak.  I keep my head down, keep to myself and do my best to not cause others pain.

Then there are the days when even that is too challenging a task.  Anger is almost always the result of tremendous, debilitating fear.  This is just one reason why I so vehemently object to the way in which autism is depicted in the general population.  Just about everything that is currently written by non-Autistic people regarding autism is fear based and increases fear.  And where there is fear, anger is not far behind.  Fear and anger cause many to behave in ways they wouldn’t, were they not feeling terrified and/or enraged.  Fight or flight.  I do both, sometimes within minutes of each other.  Neither is particularly helpful.

I know I still have a tendency to look to the “next thing” that will help my daughter.  I know this is what I have a tendency to do.  I am trying to trust myself and her more.  I am trying to remember that I don’t always know what will help and, as it turns out, neither does anyone else, but I can make sensible, informed decisions.  I am trying to accept that no one can predict with absolute knowledge what will occur in the future.  I am trying to parent my children with respect for who they are, what their interests are and not what they may or may not become.  I am doing my best to be present, to enjoy the moments of joy.    When I go off into future, fearful thinking, I try to gently pull myself back to the present without admonishment and judgment, but rather lovingly and with kindness for my own faltering, uneven progress.

Em – 2002


Anxiety, Fear and The Buddha

Emma’s new school begins Thursday.  I’m grateful for this because the pulling sensation in my stomach coupled with the constriction in my chest is increasing with each passing day.  As awful as that feels, it’s a familiar feeling, one I know to identify as anxiety and it feels better than the feeling of fear AND anxiety I’m going to feel Thursday morning when Emma looks at me with abject terror and says, “Please Mommy.  I don’t want to go to new school.  We go together.  You and me together.”

When I explain to Emma, as I have every day for the past two weeks, that I will be with her, when I explain that I am going to go into her classroom with her to meet her teachers for the first time, because the school has not returned any of my phone calls or emails since we returned from Colorado, when they explain how busy they’ve been, when they say that the assistant principal did, after all, reach out to me and whose name, phone number and email address I scribbled on a piece of paper because I was in Jerusalem at the time and cannot find that scrap of paper, I will nod my head.

I will hand someone the letter I’ve written about Emma so they can better help her and understand what she needs.  The letter that Emma would not participate in writing with me, but instead wandered off, insisting that she be able to watch the Hubble Imax theatre movie in our bedroom instead.  I will thrust that letter into her teacher’s hands and hope she will get around to reading it.  None of this is happening the way I envisioned it.  None of my plans, while in Colorado have been put into action because the school was closed, not a soul was around by the time we returned to the city.  So I will make some utterance of understanding, just as I did two minutes ago when I finally got through to the Office of Public Transportation who was unaware Emma was attending a new school, which means there will not be a bus for her until this gets straightened out.  It will require a dozen more phone calls to her new school who hasn’t picked up their phone, a dozen more messages like the one I left this morning will be left, and finally I will physically go to the school and find someone to speak to face to face because leaving endless messages on various extensions is an exercise in futility.   I know this.

In between writing this post I will pick up the phone and call several more times, just in case, just on the off-chance an actual human being will pick up and miraculously connect me to someone who knows that Emma is enrolled in their school and will be kind enough and compassionate enough to understand how big a deal this is for her.   Someone who will understand the enormity of this next step in Emma’s life.  Someone who will hear me when I say she is anxious.  Someone who will not judge me for wanting to ease Emma into her new school and will be kind to both Emma and me when we arrive.  Someone who will agree to work with me in these next few days or weeks, or however long it might take before that anxiety, that terror subsides.  Someone who will honor those feelings and not dismiss them.  And in the meantime while I try desperately to find that person who may not exist, I can, at the very least, be that person for my daughter.

I am walking that precarious fine line of honoring her feelings, while not changing the subject or saying anything that might encourage more fear and anxiety.  Identifying my own feelings, helps me in keeping my own overwhelm at bay, so that I might better help Em manage her own.  I try to reassure Emma, but not promise things I cannot know or keep.  This requires finesse, calm, tact, a level head, the knowledge of when to remain quiet and when to speak, this requires things I do not possess, but am trying to learn.

“I don’t want to go to a new school,” Emma said again yesterday.

“It’s scary to go somewhere new,” I answered as she put her head on my shoulder.

Em nodded,  “I don’t like the new school.  I’m scared, Mommy.”

“New things can be scary, Emmy.  But on Thursday I’m going to go with you.  I’m going to meet your new teachers with you.  And then when you are safe, I’m going to go for just a little while and then I’ll come back and we’ll go somewhere together.  Somewhere fun.  Where would you like to go?”

“Mommy will be right back.”

“That’s right.  Where would you like to go after your first day of school?”

I want to go to the big carousel and the zoo,” Emma said.

“Okay.  That’s what we’ll do then,” I promised.  I’ve cleared my calendar for both Thursday and Friday.  I am planning on hanging around the vicinity of her new school, I will be there to pick her up, I will go with her in the morning, I will photograph her bus driver and the bus, her teachers, her classroom, her classmates.  I will go over these photographs with her on the weekend.  It will take what it takes.  I can’t remove her fears, but I can try to ease them.

Over the weekend I took Em shopping for a new dress to wear to school.  We didn’t find one, but we did find some other things for her to wear.  On the way to the store Emma stopped in front of a shop window and said, “Look!  It’s a Buddha.  It’s a wonderful Buddha!”

And in that moment we were both happy.

Emma’s New String And A New School

Emma will be attending a new school this fall.  We were given a placement by the Department of Education mid June that was not over an hour from our home. This new school seems to understand the concept of sensory issues and needs, or at least they’ve heard of the idea and appear willing to consider that this is important to Emma.  They seem interested in my desire to be involved.  We will be working together on a transition.  I plan to meet with her new teachers and the assistant principal.  I will photograph all of them as well as the interior and exterior of the school to put in a book that Emma can look at prior to her first day.

The school has a large gymnasium and a huge auditorium with a stage.  There’s a roof playground and a little area filled with books.  It’s a special education school within a larger “regular” public school.  They seem interested in having Emma do at least some things, like PE, with the kids from the larger school, so she’s not completely segregated out.  It’s by no means ideal, but we have yet to visit a school, private or public, that is.

I took Emma to visit the school in July.  She was anxious, kept saying, “No, I don’t like the new school.  I don’t want to go to new school.”  We talked about how new things are scary.  I told her that at this school she would be able to go swimming in the pool across the street once a week and that there would be new teachers and children.  I could see how anxious she was, just visiting.  I felt the tightness in my heart and stomach.  That feeling hasn’t left me.  I am as frightened as Emma.  This is a big change.  It is an enormous question mark.  Emma has been dealing with her anxiety by saying goodbye to all her old teachers and classmates.  “Lauren is gone.  Charlie is gone.  Soufien is gone.  Rachel J. is gone…” Emma will go through the lengthy list and then always ends with, “Emma goes to a new school!”  I’ve asked her whether she’d like to visit her old school to say goodbye, she is adamant that she does not.  I’ve asked if she’d like to see some of her old friends, she has shaken her head no.

Emma has a new string that she loves.  I’ve written about her string before.  Unlike her scrap of blanket (cokie) which works like a sedative and makes her sleepy, her string seems to help her focus.  She twirls it or will hold it in her hand as she runs, jumps on the trampoline and plays.  Since we’ve been in Aspen she has lost her string three times now, leading to shrieks of terror and screams of “You lost it.  You cannot throw it.  Have to look.  Mommy!  I need help!”  And then tears.  Lots of terrified crying.  Each time we’ve turned the house upside down and eventually found it, but it’s been traumatic for all of us.  This last time it went missing, Richard and I began to think we’d have to place limits on it to ensure it didn’t get lost.  A couple of friends suggested alternate strings, a kind of backup string.  So I asked Em if she’d like to find an “outdoor” string.  She easily chose a long piece of purple ribbon.  She cheerfully took it out with her when we went for our morning ride on the 4-wheeler yesterday.

It occurred to me then that she could have a number of alternate strings.  I thought about her new school and realized she could have a special “school” string too.  I asked her if she liked this idea and she nodded her head vigorously.  “How about a school string and a Saturday string, a back up string and we can find another indoor string,” I said.  “Yes!” Emma replied, clasping her new purple string in her hand as she got on the 4-wheeler.

At her old school several years ago one of her teachers introduced a school “cokie” to detrimental effect.  Emma would sit in the corner with her scrap zoning out.  Over the years her various teachers tried to curtail her use, put limits on her cokie, but nothing they did worked.  Every few months I would get a call from her teacher describing melt downs, her inability to attend, her desire to have it with her all the time.  Each time my heart ached for her as I put the phone down knowing I’d been unable to help alleviate the situation.  At her new school we are hoping by providing her with a school string some of her anxiety may be mitigated. I am hoping she does not latch on to a “school cokie” I am praying some well-meaning teacher does not introduce her to one.  We will see.  In the meantime if any of you have suggestions about how to help us help her with this transition – let loose!

Emma’s Cokie

Emma’s old string

Emma’s new string

Emma’s purple string

Parenting and The Depiction of Autism in the Media

We are inundated with disturbing imagery regarding autism in the media.  Perhaps one of the most famous is a video Autism Speaks made.  It is a video montage with a number of parents speaking of their distress and the difficulties they face while raising an autistic child.  Their children are almost always present as the parents speak.  The camera cuts to these same children in full meltdown, stimming or sitting alone in a playground in stark contrast to their neurotypical peers who are running around shouting and laughing, while playing with one another.  At one point a parent discusses how, for a brief moment she allowed herself the fantasy of driving off the George Washington Bridge with her autistic child.

The video is disturbing on many, many levels.  I’m sure it was successful in raising a great deal of money.  However, as someone who once viewed images such as these through the lens of ignorance and as a result was paralyzed with the fear these images induced, I am aware of the underlying emotional manipulation that is so obviously being employed.   It is propaganda, whether intentional or not, biased, deeply prejudiced and intended to create fear.  And it is doing tremendous damage to Autists.  These types of imagery perpetuate the marginalization and unfortunate stereotyping of people on the spectrum.  In using the images of Autistic children it negates and ignores the effect these depictions have on those same children in ten or fifteen years from now, when they grow up to be autistic adults.  Sadly it is not just Autism Speaks who is engaged in this kind of negativity and bias.  News programs routinely air shows about “savants” who are seen as fascinating curiosities or programs about the tragedy and horrors of autism, citing statistics and the growing numbers, with shrinking resources etc.  How did we get here?  What happened to ethics in journalism?  What happened to the idea that journalists have a moral responsibility?

For those who do not have an autistic person in their life or have never met one, these images are the only things you have to base your perceptions on.  Just as when I was first told Emma was autistic, my mind grabbed onto the image of Dustin Hoffman rocking back and forth while muttering in his role as Raymond Babbitt in the movie Rainman.  Raymond Babbitt and Emma are as dissimilar to each other as I am to Raymond Babbitt.  But at the time of Emma’s diagnosis I knew of no other autistic person, so this was who I immediately thought of and then felt confused as to how my daughter could possibly be autistic.  Many years later, when I met Temple Grandin at a lecture she gave, I again found myself looking for similarities.  There were very few.

Over the years there have been countless news programs showing autistic children, teens and adults and while some of the people depicted share one or two behavioral similarities to Emma, I have yet to see any, where I think – Oh, that’s what Emma will certainly be like in 15 or 20 years.  Comparing Emma to adults on the spectrum is something I have been doing for years without realizing it. This is not something I do with my son Nic.  In fact it never occurs to me to compare him to adults.  I know and trust that Nic will continue to mature and grow up to be the responsible, kind, thoughtful, intelligent human being that he is already showing himself to be.  Why do I not do this with my daughter?   Clearly this is where my work lies.  It’s a double standard that I hold, one for my neurotypical son and another for my autistic daughter.  Here is where using the word neuromajority really is appropriate and more accurate.  Nic is in the neuromajority and therefore I understand and assume things about his future that I cannot know any more than I can predict my daughter’s.  But because he is in the neuromajority I am able to lull myself into a calm state of thinking that I know, or feel that the chances are at least better than good that he will grow to be the person I can see him becoming now.

With Emma, her future, in my mind, remains a giant question mark and so I can fall easily into fearful thinking.  The one thing, the single most important thing that is making an enormous difference in my thinking regarding my daughter, is communicating with Autistic adults.  There are a number of them that I particularly like and admire, that I reach out to and who are kind enough to take the time out of their busy lives to communicate with me.  I do not assume Emma will grow up to be just like any one of them, but in communicating with them I am given tremendous hope because unlike the media coverage of autism and autistic people, they do not live their lives from one dramatic sound bite to another.  They are complicated, interesting, intelligent people working, studying and living their lives.

As a result the frightening portrayals the media seems so enamored with are softened, I am able to be logical in my thinking when confronted with those images and now even choose to avoid those programs.  I do not need these depictions to compete with the very real autistic person in my life who struggles, yes, but who also progresses, who is funny and happy, smart and kind and loving, sensitive and unique, who will continue to grow and mature to become a young woman with all of those qualities and more.   If there is one thing I can cite, which has changed how I think more than anything else, it is in being in contact with these kind strangers who are autistic.  I’ve written about this before, and I will continue to write about this, because it is the thing that has changed everything that I believe and has opened my mind to the very real infinite possibilities that exist and has given me hope.  I fall easily into fearful thinking, but I was capable of that long before my autistic daughter came into my life.

Fear = Feel Everything And Remain

Fear.  It creeps up on me, seemingly without warning.  Sometimes I get hit with it while brushing my teeth or waiting with my son, Nic, for his school bus or when I am walking to my studio.  Like a person suddenly appearing in front of me, it startles me every time.

There are phrases using fear as an acronym, such as:  F*ck Everything And Run, or False Evidence Appearing Real, or Failure Expected And Received, or Frantic Effort to Appear Real.  I like some of those, but the thing that I’ve found helps the most is to admit I’m feeling fearful out loud.  To “out” it.  To not allow it to sit, twisting and turning in my gut, while pretending it isn’t there.  Pretending it isn’t there rarely helps.  On the other hand, allowing myself to go into intricate detail about it often makes it worse, like feeding a dragon, or adding fuel to a fire, (pick a cliche) so it seems there’s a balance needed.  Feeling the fear, acknowledging it, and then trying to trudge along anyway, or do as my favorite saying regarding fear – feel the fear and do it anyway.  The “it” is often a moving target, particularly as this morning’s fear is all around future thinking involving Emma.

Which leads me to the two most detrimental things that lead me to despair faster than anything else when it comes to my daughter – future thinking and comparing her to others.  Compare and despair, they say.  Deadly.  It is deadly and it doesn’t matter whether I am comparing her to another autistic child or a neuro-typical, it is deadly.  I try to cut that one off at the pass.  If I see it coming I try to turn my back.  “Don’t go there,” I tell myself.  Sometimes it’s impossible, large gatherings with other children are the worst and sometimes it’s impossible  to avoid.  Sometimes I have to sit and hope it just washes over me and leaves.  I hope there will only be a few waves of it.  I hope I’ll be able to stay upright.  I hope that I’ll be strong enough not to cave under the weight.

That’s the thing about fear, it can be so all encompassing, so random, so…  sprawling.

Make a list.  This is an action step I take when I feel as though I can’t breathe.  Make a list.  Prioritize.  What needs to be done?  This past month I have not been as diligent with Emma’s “study room” and she has not been progressing as rapidly as she had been, so I’ll need to figure out how to manage my time better to get back to that.  Emma’s literacy program is one that continues to fill me with hope and gives me energy.  Seeing her progress with her reading and writing has been the single most helpful thing in keeping the fear at bay.  When Emma was stalled out, not moving forward, those were the darkest times.  As long as she continues to progress, her self-portrait, her letter, her writing about going to the zoo, are examples and the things I cling to like so many scraps of wood in the middle of an ocean of fear.  Just keep my head above the water, just hold on, keep treading, keep breathing, it will be okay.  It will be okay.

Make a list.  Check.

Don’t pretend I’m not feeling the fear.  Out it.  Check.

Feel it.  Check.

Keep moving forward.  Check.

I know these things won’t remove the fear, I know they won’t completely eradicate it, but they are the things I know to do that will help, even if not in this next moment, but in the next few hours, the next few days, the fear will dissipate.  It always does.  Take a deep breath.

FEAR = Feel Everything And Remain

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

To read my guest post on Special Needs.com, click ‘here

A Different World

To piggy-back on to Richard’s “Shift” post; mine began with a slight tremor in the form of a book.    Autism and Representation Edited by Mark Osteen.   That book opened my eyes to so many things, but most importantly it introduced me to the words, the voices and lives of many adult autists.  After reading Autism and Representation, I started looking for other writings by autists.

While I was doing all of this, my friend, Kelly (I consider her my friend, though we have never actually met, nor spoken) commented on one of my posts with a link.  I went to the link, (written by an autistic adult) couldn’t believe what I was reading, read everything on her blog and began reading all the blog links she listed.  From those links I was introduced to dozens more and finally mustered up the courage to respond to someone’s comment on one particularly controversial post, written by a mom of an autistic child.  For me, someone who was now showing up very, very late to the party, I was fascinated by the comments written by autists much more than the post itself.  Being the compulsive and thoroughly obsessive person that I am, I systematically went through every single comment, madly clicking on each and every person’s link and began reading their blogs.  This was the beginning of what turned out to be the education of a lifetime.  Wow!

One of the links led me to the WrongPlanet where I read the interview with Henry Markram about his Intense World Theory of Autism.  His theory confirmed everything I felt I’ve known about Emma, but that many specialist said wasn’t true.  On the contrary, the common thought about autists is that they lack empathy and therefore feelings.  Finally I was reading something that resonated.  Markram’s theory has opened up another world to me.  I have always known Emma was very intelligent, I have never doubted that, ever.  But his theory of intense feelings and pain memory and how this causes the child to withdraw… well it was like being told you really are seeing what you thought you’d been seeing all these years.

Up until this last week, my fear of what the future held for Emma was something I could not begin to describe.  Everything about her future filled me with terror.  Every birthday marking another year gone by, filled me with trepidation.  Each time we had to teach her to state her correct age, I gulped down massive amounts of fear.  The fear was so great I could do nothing other than tamp it down.  I kept a firm grip on it.  The minute I felt myself sliding into it, I pushed myself back out.  That takes a lot of energy.  It takes up a lot of space.  I didn’t even know I was doing it until I began reading these blogs written by autistic adults.  Adults with a wide variety of issues and challenges.

It’s not as though I read these blogs and thought – oh isn’t it great how cheery and easy everything is for them.  Because it isn’t, far from it.  But somehow, reading about individual lives, feelings, struggles made it less frightening.  Reading the outrage, the cries to be heard, the desire to be respected and treated as such, the ridicule many have endured, the bullying ALL have endured, made it real for me in a way that I could not have anticipated.  And in doing so, the abject, nameless, all encompassing fear I have tried so hard to shove away,  dissipated, because there is this community that is like her, a community of people who understand her, who are fighting with courage, tenacity and determination to be heard.  They are fighting and speaking out, many with the hope that one day Emma and those like Emma who are just being diagnosed now and those yet to be born, won’t have to.  I am profoundly grateful to each and every one of them.  If we want autism awareness, these are the voices that need to be heard.  It is up to us to listen.

For more on our journey through Emma’s childhood of autism, go to:   Emma’s Hope Book

Emma’s State of Bliss

It was this state, this blissfulness in Emma that caused us tremendous existential concern.  When Emma was first diagnosed she was two, just three months shy of her third birthday.  She was an exceedingly happy, though quiet and increasingly isolated child.  If left alone, she was content to putter around, seemingly unaware of dangers, which led her to cross the street without looking, wander into a raging surf at the beach, go off by herself never looking back to see if anyone knew or was following, etc.  When one of us tried to interact with her, she immediately made us aware of her displeasure – we were rejected, pushed away.  Emma was happiest in the company of herself.  It was this state of apparent blissfulness, we realized, we would have to break through in order to have any hope of connecting with our daughter.

Parents often describe their child diagnosed with autism as “slipping away” from them, the bizarre sense that their child “was disappearing” or “fading.”  These are the words we use to describe the inexplicable distance and disconnect we feel from a child who appears not to need nor want anything from us or the world.   These words cannot adequately describe the inexpressible grief, the feelings of impotence that inevitably arise from parenting such a child.  The bizarreness of Emma’s “autism” is beyond description.  Our decision to break into Emma’s state of bliss was not without land mines.  We were aware that the world we wished her to enter (ours) was both a selfish desire on our part, but also selfless, in that if we didn’t, it seemed likely she would only sink deeper into a world of her own making, isolated, alone and silent, making it impossible for her to survive.

I am reminded of the poem by John Donne – “No man is an island entire of itself; every man is a piece of the continent, a part of the main…”  That she was unaware of this, seemingly incapable of grasping what this meant was something we knew we would have to teach her.  It is something we continue to work on.

Emma’s sixth birthday

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com