Category Archives: neuromajority

Variations in Neurology and Other Ramblings

I say I’m an addict and you envision a bum passed out in a gutter on the lower East side.  I don’t look like that bum.  I don’t fit that image.  So you smile at me and say things like, “well, you can’t really be addicted to food, can you?” or “oh you’re not really an addict, why label yourself that way?” or “you just need to use a little more self-control,” or “why can’t you just stop?”

I call myself an addict, not because I am active, but because I cannot allow myself to forget that my brain is hard-wired that way.  Once active, I can’t “just stop.”  I call myself an addict because that is the best descriptor of how my brain works.  I accept this.  I know this about myself.  There’s no judgment, it is what it is.  I call myself an addict because I don’t have the wiggle room to say I’m not.  Whenever I delude myself into thinking maybe, just maybe I can do x, y or z just this once, I’ve opened the door to addiction and I can’t afford to do that.  Once I become active, I may be able to stop, but I may not and that’s not a risk I am willing to take.  For twenty-two years I lived as an active addict and by the time I finally found the support and help I needed, I was ready to end my life.  It is not a way of life I want to revisit.  (I’ve written about some of this, ‘here‘, ‘here‘ and ‘here‘.)  But people have a tough time with this concept.  People who aren’t addicts, find this difficult to grasp.  That’s okay.  They don’t need to understand it.  I just need to keep doing what I’m doing.

There are things I need to do that help me stay “clean”.  I need support from other addicts.  Those friendships and relationships are not only important, they are essential.  All of us have a similar vision for each other and ourselves.  We place our shared vision above individual personalities.  If a disagreement arises, we try to remind ourselves and each other that our common goal is far more important than whether we like or dislike someone.  We try hard to keep away from gossip, judgment and personal attacks as best we can.  We talk about progress not perfection.  We mentor each other and reach out to those who are struggling.

Within these principles there are a great many tools that help us.  For me, the single most important thing has been realizing that when I behave with integrity, and by that I mean, do not lie, cheat, take advantage of another, treat others as I would like to be treated, do my best to keep my energy directed at my behavior and actions, reach out to those who may be struggling, listen, learn, remain curious and tapped into the wonder of life and all that I do not know, then I will live a far better life than if I do not do these things.  This also is the only method I know of to stay free from my addictions.  It’s pretty simple, right?  Simple, but not easy to practice.  I often don’t get it right.  But I keep trying.

I bring all of this up because there are many of us who have neurologies that differ from the majority.  As I said, judging my own or anyone else’s as good or bad, better or worse is unhelpful.  It is what it is.  We can get caught up in semantics, we can argue about addiction or any other neurological variation from what is considered the “norm”.  But more importantly (to me anyway) is the vision.  Many do not agree with that either.  My vision includes a society of inclusion.  I am reminded over and over that compassion and love are actions.  Who I am and the way I behave have nothing to do with what others think of me.  There are people who need support to do things I can do without thinking.  Things I take completely for granted, like communicating.  There are people whose lives could be transformed from one of misery to one of purpose if their neurology was accommodated.

In yesterday’s interview, Tracy said, “The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.”

We are all more alike than we aren’t.

What’s a “Good” Mother, Anyway?

I cannot stop thinking about one of the Autists who commented on my latest Huffington Post piece.  He is Autistic and is unable to function without the support of his family.  He writes about his wish for a cure.   He writes about his short-term memory, his “lack of visual-spatial and motor abilities, inability to interact with others in basic interactions, weak attention span, processing speed, reaction time…”  He writes, “If I had skills and could really absorb knowledge, I’d have some kind of a career and I would do basic things without my family all the time.”

Before I responded to him I reached out to some Autists I know asking for their thoughts.  Some people responded, for which I am grateful.  Steve, diagnosed after his child was diagnosed, thoughtfully provided me with a number of links and introduced me to Amy Sequenzia, a non-speaking, Autistic self-advocate.  Amy blogs for a wonderful community blog Ollibean and was profiled on The Thinking Person’s Guide to Autism, Slice of Life Series (click on her name to read) and  Paula Durbin-Westby the mastermind behind “International Autism Acceptance Year”  also profiled on TPGA’s Slice of Life series offered some suggestions.

As I read their thoughts and opinions and words I felt a surge of anger.  Because these are the people the neuromajority should be listening to.  Take a moment to imagine.  Imagine you were unable to do a number of things without the help of others.  Think how you would feel if those people, the very people you depended on spoke to you with undisguised annoyance, or worse, outright contempt.  Think about how that would effect you.  You didn’t have the choice to walk away.  You didn’t have the ability to leave.  You had to stay because you needed their help.  But their help came with a price.  It wasn’t given freely.  There was disdain, irritation and often you were spoken to as though you were dirty, damaged or contagious.  Or perhaps people were kind, but full of pity and spoke to you as though you were a child.  Think how years and years of being treated this way would make you feel?  (Obviously this is not every Autistics experience, but sadly it is a great many.)

Now think  how you’d feel when the coverage in the news and elsewhere about you, about the things that effected your life, were spoken without a word from people like yourself.  Those voices weren’t being heard.  Those voices were drowned out by all the other louder voices intent on making decisions about YOUR life and for you.  How would you feel?  I would be angry and then I would feel depressed and in despair and yes, I just might wish for a cure.

But as the parent of an autistic child, that cure idea has done a great deal of harm.   It caused me to lose the ability to logically see things from a practical perspective.  As I wrote in my reply to Billy – When Emma was diagnosed I was determined to cure her. I thought that’s what a “good” mother should do. In my determination to cure her, I lost sight of who she was. I thought she was hidden under the “autism” and if I could get rid of it, there she’d be, like a baby chick emerging from its  shell. Only that’s not what happened. I couldn’t find a cure. I discovered, when I stopped looking, she was there, waiting for me to see her as she was, as she is. Will she have difficulty in life? Absolutely. Will the world treat her as less than? Yes, sadly so many will.  Some speak to her as though she were an animal. I would do anything to have the way people treat her change.

I can’t make people do that, but I can try to make them think about their assumptions. And while I’m doing that I can appreciate Emma for who she is in this moment, exactly as she is.

I don’t have time to write more now.  But this conversation, whether I just end up talking to myself, or whether I can get others to join in, I will continue, with the same relentless determination that I once pursued a cure for my daughter.

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.

Autism and the Neuromajority

I am wading into murky waters with this post.  I know this, but I’m going to do it anyway…

I really dislike the word “neurotypical.”  It’s one of those words that has always bothered me because, in my opinion, it doesn’t really mean what it’s meant to mean.  Neurotypical is the word coined by many in the neurodiversity movement, (a word I like – neurodiversity – by the way, kind of like biodiversity, there’s no pejorative, underlying meaning) because it does mean what it’s meant to.  But I don’t think neurotypical goes far enough.  I understand that it was created as an upgrade and improvement from the word “normal” (a word which really, really bothers me.)  The word normal being completely subjective and arguably something none of us could really say we are if anyone is being brutally honest.  But neurotypical, while certainly preferable to “normal” just doesn’t do it for me.

Last weekend, Richard and I were talking about autism, and I said, “the neuromajority…”  Richard said, “I like that, neuromajority.  That’s good.”  Yup, these are the kinds of conversations we often have with each other…  He agreed with me that he didn’t like the word neurotypical either.   The word “typical” has a slightly positive spin to it, kind of like a private club.  Having always been unconventional (and proud of it) I’m not a big believer or fan of clubs, never have been.  The word neurotypical is also vague, open to interpretation, completely subjective and ultimately confusing.  I don’t like that.  So I started using the word neuromajority.  It doesn’t roll off the tongue as easily as neurotypical, but at least it is more accurate in that it means what it’s meant to mean.  Neuromajority – It is the neurological state the majority of humans have, neither good nor bad.

Flushed with pride in having come up with such a brilliant new word, a word I felt I alone had coined, it hadn’t occurred to me that others may have already used this word.  Until I began writing this post.  As I was writing, right around the end of the last paragraph, I suddenly thought – I should Google – neuromajority – and see if anything comes up.  There were three instances of neuromajority being used, one of them was a comment left on an interview with Temple Grandin for 60 minutes.  The commenter wrote:  “Like most of the neuro-majority you reached beyond her statement and arrived at the conclusion this means she’s faking her eye contact” and the other was from a blogger with the blog – 1uppitywoman where she writes:  “Asperger’s has complicated life for me only so far as the neuromajority bristles at people like myself because we’re different from them.”  The last was another comment left on the blog AspieWeb.  So I went from feeling pleased with myself for my tiny stroke of brilliance in having come up with a word I prefer to use in describing myself and others like me, to the humility of realizing I had NOT come up with this word all on my own, to indignation that only three sites came up where the word was used.  My thinking is, since it’s been used, then why hasn’t it taken off and been used by a great many?  After all it’s a really good word, isn’t it? (!)

So I’m putting it out there – does anyone else dislike the word “neurotypical?”  Is there a better word we can use?  What does everyone else think?  Or is all of this way too political and therefore weighty and fraught with unseen implications that I’ve missed?

Tomorrow’s post will be about Emma’s new name for her dad.

For my latest piece in the Huffington Post, click ‘here‘.