Category Archives: Autism “Awareness”

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

**Em

Those Who Influence..

There have been a number of Autistic people who through their writing or by meeting them have greatly influenced my thinking and radically changed how I view autism.  Through their writing and/or our direct interactions I began to question everything I thought I knew.  I began to see that so much of the information I’d been given was false.  It was because of these people that I have a level of understanding about the problems with *functioning labels, the problematic issues surrounding *segregating Autistic children from other non Autistic children not only in the classroom, but in life.  I have a better understanding about how *important the words used to describe autism and Autistic people can do tremendous damage or, conversely shift the conversation to one of better understanding and progress.

*I have put related posts below for each of these topics.

All of this brings me to Ibby.

Ibby was/is someone who radically changed my thinking, and continues to change how I think about autism and my daughter.  I have written about Ibby before ‘here‘ and ‘here‘.  We met at a disabilities conference not quite a year ago, where she was presenting.  Ib has changed my life.  I don’t know how else to describe someone who is not only a close friend, but who has patiently advised me, explained things that I didn’t understand, didn’t judge me, never shamed me, but instead was kind, loving, compassionate and very, very patient with me.  For those of you not familiar with Ibby, I hope you’ll go to her blog and read her writing.  If there is one thing I would like to see change regarding autism”awareness”, it is that the public become familiar with Autistic people like Ibby, who are tirelessly speaking out and patiently trying to bridge the massive gap between public perception surrounding autism and Autistic people, and reality.

There are a number of people who have been crucial in influencing me, Ibby is one of them.

Related topics

 

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

Autistic:

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

Be the Very Best YOU, You Can Be

There’s a great deal of talk about acceptance regarding autism this month, which is a wonderful shift from all the talk about “awareness”.  As I think more about acceptance I am aware of how often I think about “embracing” as in embracing all that each of us is, without trying to mold ourselves to be something we aren’t.  What if instead of doing everything in our power to force our autistic children to behave like some imaginary and impossible non-Autistic version of themselves, we instead encouraged them to be the very best Autistic them they could be?  The same way we do everything in our power to help our non Autistic children be the very best they can be.

Isn’t that what all of us are trying to do?  Aren’t we all trying to be the very best we can each be?  So what does that look like, how do we do that?  Well, by recognizing what we’re good at, for starters.  One of my brothers is an astrophysicist and the other is a micro-biologist.  My mother was a chemist, my father a financial advisor and I don’t have a “science-y” gene in my entire body.  In college I did everything in my power to avoid both science AND economics.  These subjects are of no interest to me.  Were someone to tell me, well, you know, your most successful same age peers all love and excel at these topics, therefore you need to apply yourself more to them, and I was then forced to take these classes and was not allowed to pursue my love of art, drawing, design, literature and writing, I would be miserable.

I don’t want to spend my life crunching numbers, looking at stock portfolios, and peering through microscopes.  None of that interests me.  Hand me a book on quantum physics and I fall asleep.  The only good that comes from giving me books like that to read is the money I save on unfilled Ambien prescriptions.  I will never be, nor do I want to be, a scientist or economist, I accept this fact completely.  I don’t feel ashamed by my lack of interest.  I don’t feel this is something I should feign interest in.  I have other interests and talents; I focus on those and am very happy.  That’s what we all do.  We avoid the things we aren’t so great at, and often have little interest in, and focus on what does interest us and where our talents lie.  If we were lucky we also had parents who encouraged, supported and cheered us on in pursuing those interests.

Why should any of this be different for our Autistic children?  I don’t want Emma to try to be someone she isn’t.  I want Emma to be the very best Emma that she can be.  Which means I need to support her interests and help her find the best way to communicate.  Verbal language is tough for her, typing seems to help her access a part of her mind, that verbal language cannot, so we are doing all we can to support her typing.  How she communicates is not as important as that she be able to.  She loves to perform and sing loudly, so we have a variety of microphones and an amp that she can use to hone her singing skills.  She loves her books, so in between reading her favorite Miss Spider book, I am teaching her about arachnids, what they eat, how long they live, how many legs they have and how they spin webs.  Spiders are actually kind of fascinating. Even though Emma loves the Miss Spider books because one of them includes an electrical storm (lesson plan coming on that topic soon!) and Miss Spider has a great many big emotions, which Emma likes to act out, complete with wringing her hands and pretend tears and cries of anguish, there are a great many topics I can piggy back on, to teach her about things like – the weather, electrical storms, any and all big emotions, pretend and real, etc.

I want to encourage her to explore all of these things and more.  Last night she wanted to watch a really bad movie that she’d seen her brother Nic watching about a two-headed shark who attacks a group of teenagers.  And despite my misgivings about the content (and just awful quality of the movie in general… The acting is phenomenally bad, the shark is the best thing in the movie) it was age appropriate and I figured I could turn it off if it got too gory and awful.  There was a great deal of emoting and blood curdling screams, which Emma thought hilarious.  She kept saying, “Watch out, the shark is going to come and eat you!  Oh no!  He’s going to bite your arm off!”  Then she pretended to bite me.  Bad movie, great time was had by all AND I now have another lesson plan I intend to create regarding sharks!

Be the very best YOU, you can be.  Now that’s the kind of acceptance I can get behind!

Light it up Blue? – No

I must interrupt my previously planned programming regarding the recording of Barb’s audio book, I might be you and mention the “light it up blue” campaign from Autism Speaks, as April is fast upon us.  I know a great many, really well-meaning people will be “lighting it up blue” on at least one day in April, but I urge you to reconsider.  For those of you who love reading links to other relevant posts on the topic, here you go…

Warning April is Coming! ~ Gareeth’s Blog

Autism Acceptance Day ~ This blog was started by Paula Durbin-Westby and originally began as a way to counter the “awareness” that Autism Speaks suggests it is promoting.

Tone it Down Taupe This April!! ~ From Radical Neurodivergence Speaking an alternative to the “light it up blue” campaign!  This is a MUST read and it’s also very funny.

For those of you who can’t cope with yet another link, let me try to explain.  ”Lighting it up blue” seems like a perfectly benign and thoughtful thing to do, yet what is meant as a token gesture of caring and thoughtfulness, is actually anything but that.  Lighting it up blue is an ad campaign by Autism Speaks.  It is less about bringing any real awareness about autism or the lives being led by those who are Autistic and everything about branding and promoting that brand that is Autism Speaks.  It is a brilliant campaign.  Most people who “light it up blue” believe they are showing solidarity and support to Autistic people.  Most people would be shocked to know that Autism Speaks is the single most powerful organization promoting fear of autism by using language to describe autism as a “terrifying epidemic,” “a crisis” and Autistic people as “burdens” to society.

This quote is taken from Autism Speaks website:

“Acceptance
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism.”

This sentence encapsulates everything I once believed and thought about autism and my autistic child.  This idea is incredibly destructive and insidious in it’s seemingly benign wording, but it is anything but that.  If we separate out the person from their neurology, what do we have?  How do we do that?  What exactly does this mean?  This sentence from Autism Speaks is exactly what is wrong with the organization.  You cannot accept your child while NOT accepting their neurology.  It is not possible.  Yet this is exactly what I believed for many years to the detriment of my child’s well-being, to the detriment of her self-esteem, to the detriment of who and what she is.  But I didn’t know that.

“Lighting it up blue” is not helping any of our children or those who are Autistic.  The only one who is benefiting from this campaign is the organization who came up with it – Autism Speaks.

So before you head to the hardware store to find some blue light bulbs or open your check book, please, reconsider.   Think how you would feel if this campaign was about your neurology.  Because as Barb Rentenbach has so beautifully written in her book that I am currently recording the audio version for,

I might be you.

“Burden”? I Don’t Think So.

The roller coaster I call “autism” is less actual and more a description of my emotions, expectations and judgments surrounding specific things such as communication differences, internal issues, pain perception, sensory issues and the different ways in which Emma takes in information as opposed to the way my (more often than not) non-autistic brain works.  (My friend, AspieKid calls brains like mine NT-NOS, which I think is a hilarious and fitting acronym.) It is a “roller coaster” of my own design and construct.  A roller coaster being an accurate description of my emotional state, something I’ve grappled with my entire life and certainly well before I ever met my husband and had children.  Suggesting “autism” is the root cause for those pre-existing twists and turns my emotions tend to take or pinning the psychological upheavals I’m experiencing onto “autism” is not only wrong, it’s dishonest.

The truth is, I’ve always been a bit high-strung.  I live in New York City, a city whose inhabitants wear their neuroses proudly.  Neuroses in New York city are treated the way a runny nose is looked upon in the mid-west.  No big deal.  New Yorkers have melt downs at the drop of a hat.  I’ve seen fist fights break out between grown men in the middle of an intersection because of a perceived insult, people routinely scream at each other and cut each other off while driving.  Moms pushing babies and toddlers in Hummer-sized strollers wield them like tanks plowing a path for themselves along clogged sidewalks like Moses parting the Red Sea.  People think nothing of getting into loud arguments with lovers, neighbors, friends and strangers in the middle of the sidewalk, forcing pedestrians to walk around them.  It’s a city of ids and super egos.  It’s a city that is (perhaps) an exaggerated version of what one sees anywhere in the world.  People are capable of some pretty dreadful behavior.  Add a child with a different neurology to that already fragile, high-strung mix and you’re going to get some interesting results.  To then conclude that autism is to blame, defies all logic.  No one would do that.  Yet people blame their bad behavior, their inability to cope, their sadness, depression and general irritability on their autistic child all the time.

Suddenly it’s autism and Autistic people who are a “burden” to society.  Autism isn’t a “burden”.  It’s the negative views of autism, it’s the autism = untold horror, it’s the perception of autism and the lack of understanding and services, the lack of training and programs in our schools so they can help our Autistic children learn in a way that will ensure they flourish.  The “burden” is not our Autistic child on society.  The “burden” is the lack of support and adequate help families need so they can better support their child, giving them the sort of assistance  they need to thrive and flourish, a child who will one day become an Autistic adult and, in an ideal world, an active member of society.  We have to move away from this idea of Autism = burden.  Autism = tragedy.  Autism = _______ fill in the blank with a negative word.  We need to abandon our preconceived notions of what a non-speaking Autistic child cannot do.  We need to open our minds to the idea that our children are capable of far more than we may believe or can fathom.  We need to begin looking at what is good about Autism and the countless ways in which Autistic people can and do contribute to this world.  We need to remove the stigma and negativity and replace it with a more balanced and yes, positive view.

Imagine a world that includes Autistic people, accommodates Autistic people and stops shunning, restraining and abusing them.  A world in which it is not okay to have seclusion rooms and restraints, where a non-speaking person is treated with respect and without prejudice and where it is not assumed that because they do not speak they have nothing to say.  A world where people finally understand the burden isn’t the Autistic person, whether child or adult, it’s the lack of services, the judgments and the scare tactics being used.   Autism is big business and there is no better way to ensure dollars continue to pour in than when we are terrified. Let’s change that.

Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.  Having an Autistic child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.   One can say that about a great many things in this life.  Let’s stop blaming Autism and our Autistic children for the ills of the world and the bad behavior displayed by people.

Emma and her infectious laugh

Em

Autism “Awareness” and a State of Bliss

I’m having “a morning.”  You know, the kind where, despite how organized you are, despite how well you laid everything out the night before, everything seems to work against you.  So rather than go on a rant, enumerating all the things that have managed to go “wrong” in the last three hours, I’m going to reflect on Emma.  Because Emma is a very, very happy little girl.  In fact, unless Emma has gotten into a perseverative loop about going to the zoo or someplace that she has become fixated on and feels she cannot do without, she is in a state of bliss.  It is the sort of blissful state achieved by gurus, yogis or LSD, or so I’m told.  Yet Emma comes to this place naturally.  She does not have a “practice,” she does not sit cross-legged staring at a fixed point for an hour each day, she does not meditate, feeling euphoric if she managed to pause the endless chatter in her head for even a few seconds, no, Emma is full of joy almost constantly.

Today is Autism “Awareness” day.  It is a day that was intended, and no doubt with the best of intentions, to bring much needed awareness to the larger community.  Yet, instead it has become a day that many of us dread.  Instead of bringing awareness about what it means to be autistic, we are bombarded with frightening statistics.  Statistics that many will read and then, feeling helpless, will turn the page.  I’m all for awareness, but let’s then be aware.  Let’s be aware that our society does not embrace those with disabilities.  Let’s acknowledge that our school systems are failing our autistic children.  Let’s look at our government and exactly what is being done to help those who are autistic.  Let’s take a good hard look at autism. Let’s look at the prejudices, the bullying, the marginalization of people on the spectrum.  Let’s take a good hard look at ourselves.  Are we assuming incompetence when confronted with someone who makes grunting noises, whose speech is garbled, who flaps their hands, or doesn’t look us in the eye?  When someone cannot speak do you assume they have nothing to say?  When you see someone, on the airplane, in the playground, sitting next to you on the bus or subway, who is acting differently, do you move away?  Do you feel irritation?  Do you feel annoyed?  Do you feel impatient and wish you’d gotten onto a different car or bus?  Awareness begins with each of us.  Awareness is more than lighting something up a given color.  Awareness begins with being open.  Awareness means stopping and examining our beliefs.  Awareness means asking questions.  Awareness begins with each of us.

Awareness.

It’s a great word.

Let’s not allow it to become meaningless.

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

Creating a Community

Oddly enough I was planning to write a post about commenting on blogs and comments in general.  Just as I was sitting down to begin the post, I received an email telling me one of the blogs I follow had a new post.  The post was entitled – For Ariane and Those Who Lie Awake At Night.

A little backtracking is in order – about a week ago during another late night blog surfing session (finding blogs related to autism has become nothing short of obsessive – who says the apple doesn’t fall far from the tree?) I found a blog, Life and Ink.  The writer is a mom whose autistic son is now a young man.  Since she began the blog last fall it was easy to read all her posts, which I did.  As I did, I wrote a comment on one particularly moving post and then she answered and I kept reading and read this:

“And with that said dear reader, if YOU need help, if YOU are overwhelmed, contact me. Talk to me. Let me or another parent who has been there listen and help you. If we pooled our resources and decades of experience just think of the difference we can make for each other and for our children.

Now that makes me happy.”

When I read that, I was in the middle of trying to put the series of autistic writers together for the Huffington Post and I was writing the introduction to the series.  I thought about what Charlotte had written and it inspired me to write a hypothetical conversation:

“What if, instead of receiving that memorable phone call when Emma was first diagnosed, I received a call that went something like this:

“Your daughter has been diagnosed with autism.”

“Excuse me?”

“Let me give you a list of blogs and people you can call who have been where you are now. I think you’ll find them invaluable. These are parents whose children are autistic and autistic adults who are happy to speak with you. They will help you help your child.”

When the HuffPo piece was published I commented on Life and Ink telling her that she had inspired me to write that.  We then wrote back and forth and now she’s written the post that I’ve added the link to.  In that post she writes (in response to something I’d written earlier about lying awake in the middle of the night and listening to “the voice” – “The voice knows once you share what it has said it will lose its potency, its grip on you. And that is why talking to people about what you are feeling, what it is saying, is so important. That is why these blogs are so important.”

I don’t know if any of this makes sense to everyone reading this, but each comment I receive on Emma’s Hope Book is like a little gift.  Each time I comment on someone else’s blog and they reply, it’s the same.  A little gift wrapped up in words to savor.

On this most recent Huffington Post piece an autist wrote – “I have this feeling we’ll both soldier on.”  I loved that he wrote “we” because the truth is “we” will.  We will soldier on… together.  (As Emma would say.)

So to all of you who have commented – thank you.  And to all who haven’t, but think about doing so, DO!  It’s wonderful and I promise you, I’ll respond.  I promise.

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

A Call to Listen

I’m reposting Ariane’s recent Huffington post below. I think it’s one of her most eloquent, powerful and important posts. Whoever is in charge of Huff Post Posting apparently didn’t agree with that assessment since he/she buried it in the Huffington morgue and  now it’s been wheeled away for cremation. Ariane wanted the piece to generate some excitement about her intention to post the writings of autistics on Huff (and here) in an effort to make people more AWARE of what life is like on the inside of ASD. Reading the blogs of autistics has completely changed our perception of ASD, our children, our goals, our life together. Hopefully Ariane’s “call to listen” will spread (hint, hint) and more people will hear the joy, laughter, hopes, fears and frustrations of autistics who have been discriminated against, marginalized, disenfranchised, bullied, or simply ignored by ‘normals’ who can’t bear to look, listen or care. So without further ado:

A Call to Listen

The beginning of my “awareness” regarding autism came in the form of an apologetic voice over the phone.  “I’m sorry to be the one to tell you,” she began.  I don’t remember the exact wording of the rest of the sentence as I was too distracted by her apologetic tone and sadness.  I remember fighting the urge to make her feel better.  Responses like – “It’s okay”, or “it’s not your fault” or “don’t feel sad,” went through my head as she continued telling me that my daughter Emma had been diagnosed at the age of two with PDD-NOS.   Then she asked, “Do you understand what that means?” I wanted to say, “No, actually.  I have no idea what that means.”  Not wanting to appear rude, I said nothing.

I knew very little about PDD-NOS (Pervasive, Developmental Disorder – Not Otherwise Specified.)  Did it mean she’d become an independent adult?  Would she be able to live a happy life, filled with things and people she loved?  These were some of the questions ricocheting around in my mind.  When I didn’t answer, the voice said, “Do you agree with the diagnosis?”  Was this a rhetorical question?  How could I answer that?  If I disagreed, would it somehow change the diagnosis?  I remained silent.  “Are you there?” she finally asked.  And suddenly all I wanted was to be home with my husband, Richard, my son, Nic and my daughter, Emma.

Two years ago I began a blog out of pure laziness because I hated writing emails updating those members of my family and friends who were asking about Emma.  I figured I’d write a blog, relieving myself of the more cumbersome mass emails I felt obliged to send.  I have documented everything from Emma’s initial diagnosis of PDD-NOS to her diagnosis two years later of “autism” to our (successful) attempts at getting her out of diapers, to the evolution of my perceptions, regarding Emma and autism.  The blog began as a way to document Emma’s journey, but it became a document of our journey too.

I have never stopped researching and trying to find ways to help Emma with her GI issues, her articulation and language processing, her discomfort with transitions and her need for routine and rules.  But it wasn’t until recently and because of a comment left on my blog that everything changed.  I discovered a world I didn’t know about – blogs written by autistic adults who were more than capable of speaking for themselves.  My views and “awareness” have dramatically changed as a direct result of reading and listening to those voices.

What if, instead of receiving the phone call I did when Emma was first diagnosed, I received a call that went something like this:

“Your daughter has been diagnosed with autism.”

“Excuse me?”

“Let me give you a list of blogs and people you can call who have been where you are now.  I think you’ll find them invaluable.  These are parents whose children are autistic and autistic adults who are happy to speak with you.  They will help you help your child.”

“Really?”

“Yes!  Your child is not broken or damaged.  In fact, your child is simply different. There are ways to help her.  Don’t worry.   Even if she is non-verbal, there are methods that will help her communicate.  There are countless things you can do that will mitigate some of the stress neuro-typical parents sometimes have in trying to understand their autistic child.”

“Oh thank you.  That’s wonderful.  I so appreciate your help.”

“It’s my pleasure.  I’m sending you some links and contact information to get you started.”

“Thank you so much.”

“Remember, this diagnosis is not a death sentence.  It is a starting point.  Don’t be frightened by it.  Don’t ever underestimate her potential.  You are not alone and neither is your child.”

What if autism awareness began with listening to adult autists describing what their lives were like?  What if those same autists were on the boards of every autism group?  What if all of us, whether we had an autistic child or not were aware of autistic adults living happy, fulfilled lives?  How would that change our “awareness?” I am profoundly grateful to each and every one of the autists who are speaking out and expressing their opinions on their blogs and through other forms of media.  If we want autism awareness, these are the voices that need to be heard.  It is up to us to listen.

Throughout the month of April in commemoration of “Autism Awareness” I will be posting the writings of several autistic adults in a series of posts entitled:

Autism Awareness = Listening to Autists