I Read the News Today (Oh Boy)

The other day the New York Times scooped other publications to break the startling news that Autistic people are frequently bullied. (Gasp) According to the article as many as 46% will likely become victims.

Some may read this statistic and note that “lots of kids” get bullied. They might even call it a “right of passage.”  Heck – even Mitt Romney was bullied.  Oh wait, no.  He actually was a bully.  (Sorry.)  Others, (especially professionals), may wistfully posit, “if only Autistic kids had better social skills training so that they fit in better this wouldn’t happen.”  There might even be one radical out there who notes that bullying doesn’t necessarily stop at graduation and it occurs in the workplace too. My reaction?  Only 46%?!  Are they out of their (bleeping) minds?!

I may have mentioned this already, but I am Autistic.  I also know many other Autistic people.  Being individuals, we have many differences.  (Go figure) Everyone who I have EVER met on the spectrum, however, has one thing in common (no, not STAR WARS – another thing).  We were all bullied.  It’s a forgone conclusion when you meet someone Autistic.  The only question is to what degree.   Even if we just limit it to kids, (since everybody does that already anyway), I would have to guess that the number is probably closer to 96%. (The other 4% are homeschoolers.)

This article also shared another key piece of information.  Apparently “high functioning” kids or in their words, “those who also hold the most promise for leading an independent life” (yes, it really said that) are almost always the targets.   Why?  Because they end up in mainstream classes.  It is true that when you are denied access to other kids, your chances of being bullied by other kids does decrease.  That’s why school staff members (classroom aids, teachers etc.) so frequently take it upon themselves to fill that role for kids in special ed classes.  Anyone who doesn’t believe me should read the news more.  Tabasco dipped crayon anyone?

The point of this latest little diatribe is that bullying is a very serious problem for almost all people across the entire spectrum and throughout our lives.  Something needs to be done about it rather than yet another (bleeping) study.  How about we start by calling it what it is.  Abuse.  Then we should maybe educate people about how to treat others with respect and dignity and stigmatize the bullies instead of the victims for a change.  And if all else fails maybe we should make sure there are serious consequences for abusers who hurt people, especially people who are more likely to be victimized because they are devalued by society already.  I think that in other contexts they actually have a name for that already – hate crime.

The Outsiders

So I was at a neighborhood block party the other day, minding my own business perusing the sixteen varieties of potato salad represented to attempt to guess which might be the least crunchy, when an explosion sent  me to the pavement making what novelists would likely describe as a “keening wail.”  After a moment of complete silence, a hand reached down to help me up, and the kid who had popped the stupid balloon five feet away from me was dragged over by her mom to apologize. Everybody went back to talking and before long the beer fueled karaoke was in fill swing and the the whole thing was forgotten.

Later, while pacing before bed, (helps me to relax), I thought about how amazing it actually was.  It had happened so many times when I was growing up.  A noise that hurt my ears and scared me caused me to have an extreme reaction and in response I had been laughed at, made fun of, “redirected,” punished, studiously ignored, you name it, but nobody had ever helped me up and apologized before.   Who ARE these people living on my block I wondered.  Why did they in particular treat me with more dignity?

When I moved to this neighborhood I was a little nervous.  I don’t really fit in anywhere very well but I knew that I didn’t have much in common at all with the people on my street.  There are all kinds of folks here.  They represent a veritable melting pot of nationalities and racial backgrounds.  There’s a family with two moms; there are a few with no dad; there’s a couple who I am pretty sure used to be bikers and a guy who I think I saw manning a Lyndon Larouch table once.  It’s an interesting bunch but I wasn’t sure that they would “get” an Autistic person, so even though I can “pass” I was a little hesitant to even attend this party.  I’m glad I did.

I think that the key is that all of these folks could possibly have been considered “outsiders” in some way.   They were members of minority groups and even though they were different groups they still “got” what it feels like to be on the outside.   Or maybe they just thought I was drunk, but I personally prefer the first explanation.

 

If Only Autistc Adults Could Get ABA! (Not Really)

Guess what I saw today!  Hint – it was very rare. No, not a feminist member of the Tea Party donating money to a homeless shelter – even rarer.  It was an article discussing the radical idea that maybe society  should acknowledge that Autistic people over the age of ten might need a bit of support.  Don’t worry though, like almost every other article about autism, it just suggests that we give researchers more money for “studies” and give Autistic people better “interventions” and more drugs.  Don’t want to get too radical after all.

For the most part it was just your usual “1 in 88” kind of piece citing CDC statistics, using verbiage one would apply to the discussion of a disease etc.  Everyone in these pieces is always “suffering” from autism and the intended audience in never Autistic people ourselves (because everybody knows that we can’t read) but rather our parents.

Two things make this article worth mentioning, though, the fact that somebody finally remembered grown up Autistic people, and the fact that people still just don’t get it.   It’s not just the author of the piece though,  judging by a comment after the article that one member of the intended audience made.  Apparently “these kids” need to have access to ABA just like little kids, because that’s how “they” learn.  Well, as a former member of the “these kids” club I would like to share another suggestion.

Now, I know that this may sound kinda wacky, but maybe instead of giving us better drugs or access to rote memorization in an artificial environment you could give us the following:  the opportunity to learn age appropriate information, however we as individuals learn best (hint: we are not BORG), in a sensory-friendly and safe environment, the opportunity to “obsess” as much as want about subjects that interest us,  and the right to self-regulate in any way that works well for us (even if it looks weird and embarrasses you.)  Maybe, if you’re feeling particularly generous you could even stop assuming you know exactly what we can’t do and start presuming that we know and understand much more than what you realize.

If you want to help Autistic people have a successful and happy future, the way to do it is not through more studies, drugs and ABA.  It’s through respect, acceptance and empathy.  Still, I guess the fact that someone wrote something that acknowledged us is a start.  Who knows, maybe someday somebody will even figure out that most of us can read.

 

 

The Importance of Finding Out Useless Crap About Autism

As you may have heard, many Autistic people like routine. Well, I’m one of them. Every morning I get up, shake off the three hours of refreshing melatonin-induced sleep that I got, and head downstairs. Sitting down with a steamin’ cup o’ joe I fire up the computer and find out why I’m Autistic today. Were my parents old, fat, Republican? Was my mom, dad, anyone, exposed to a viral infection in the first trimester? Perhaps I was raised in a toxic waste dump or born on a Tuesday. The possibilities are endless. What matters is that the routine never changes. Ever.

In these turbulent and uncertain times it is good to know that we can rely on something. Leaders may come and go, empires may rise and fall, but there will always be some researcher somewhere spending money that could be used to keep Autistic adults out of institutions on finding out useless crap about autism.  And thank God. What would society do without the knowledge that Autistic people lack empathy because we don’t assign the same personality traits to anthropomorphic triangles on a computer screen as “normal” people? How would people form stereotypes about us without modern studies based on outdated, discredited, ambiguous and arbitrary data from 1947? This research is absolutely essential.

What frightens me is that someday some irresponsible (sentient) person may decide that this money should be spent in other ways, like helping Autistic adults overcome decades of discrimination to thrive in the workforce.  Who needs that? What we really need is more studies on why Autistics are so … not normal … and how we can fix them, or better yet, prevent them all together. Hey, nobody needs another Albert Einstein on their hands.

I’m not really worried though. Luckily, we have plenty of big groups that will keep raising money for the “right” autism causes.   Remember, the best way to make sure that nothing ever changes, is to keep listening to those groups instead of actual Autistic people.   We wouldn’t want to mess up our routine.

Semantics

There are those who believe that assigning labels like “high functioning” or “low functioning”  to individuals on the autism spectrum is no more problematic than assigning them to, say, a microwave.  I am not one of them.   I have been lucky enough (not really) to discuss this subject with others in the past who have very kindly (patronizingly) taken time to explain (lecture) me in great deal why exactly I am thinking about this all wrong.  While the reasons that they have given for why I am misunderstanding (disagreeing in much too logical a way)  have been varied,  I tend to hear one comment again and again.  Apparently, I am “worrying too much about semantics.”   To those who have made this observation, I am deeply touched that you are so concerned about my mental health.  Your generous offer to think for me is appreciated, as thinking does take up a lot of my time, but I actually rather enjoy it.   Perhaps it’s time we discuss “semantics” a little further.

As everyone (who has ever actually looked up the word) knows, “semantics” has more than one meaning.  According to Merriam-Webster, one definition is “the language used … to achieve a desired effect on an audience…”   Let’s consider the words “high” and “low.”  If there were just some way to get an idea of what effect those words might have on audience.  Maybe if we knew what other words were considered to be similar? I have an idea!  Let’s break out the thesaurus!  (I just love the thesaurus.) According to Thesaurus.com the following words are synonyms for the word “high” : elevated, lofty, tremendous, uplifted, and upraised.  In contrast, the following words are synonymous with the word “low”: below, beneath, inferior, lesser, and small. High=elevated and uplifted.  Low=beneath and inferior.  Uh oh.  Does anyone else think that maybe the effect of those words could actually be, well, really bad?

They are just words though right?  How could using a simple term negatively impact on a person’s life?   Well, the answer is a whole lot when the words are “inferior” and “beneath.”  Calling me a pessimist, but I think that implying, that someone is inferior, or better yet actually labeling them as such, does not exactly set them up for success.   In fact, it might even open the door for a lot of people, especially those who don’t get into thinking all that much, to do things like devalue people.  And then all kinds of bad stuff happens, abuse, neglect, limited opportunities,  lack of access to education and employment.  I could go on all night.

Generally these terms are tossed around by people who apparently have never taken a moment to consider what it might feel like to be so labeled (people who really do lack empathy.)  I have seen some people on the spectrum themselves use these labels on occasion though.  For some reason, it seems that they are always those who consider themselves of the more “elevated” and “uplifted” variety.  I wonder why.  Well, I have news for you folks, the term “high functioning” is as patronizing as “low functioning” is insulting and both set Autistic people up to be misunderstood and under or inappropriately supported.  I am “worried about semantics” alright and for good reason.

How to Be Socially Awkward or What I Learned In Social Skills Class

Over the years many people have “explained” the autism spectrum to me for which I owe them a debt of gratitude.  Without their thoughtful help I would never have guessed that I was cognitively impaired and lacked empathy.  Who knew that I would never grasp the subtleties of language or concepts, like irony, sarcasm or satire?

More than anything, though, I deeply appreciate how their expertise helped to blend in flawlessly in social situations. Rather than just staying at home and doing things that make me happy, like reading or writing about subjects I like, (being socially isolated and fixated on obsessive interests), I can instead engage in meaningless conversation with people who I don’t know well or like very much (socialize appropriately).   I have a whole list of conversation starters in my pocket and I’m ready to mingle baby!

There’s only one snag that I have run into so far, the fact that apart from other Autistic people, nobody else has had social skills training. Time and again I seem to encounter people who have not learned that when I approach them, (with a smile and good eye contact, making sure that my body is facing them and I am standing at an appropriate distance), that they are supposed to turn toward me and pause their conversation so that I can use one of the “openings” that I diligently practiced.  They also don’t know that they are supposed to warmly welcome me when I toss out, (in a carefully slowed down and not overly-loud voice),  my “Hey guys” or “What are you guys doing?”  Amazingly enough, some of them even seem to find this type of thing a little awkward, or even creepy, coming from a complete stranger.

I’m sure that it has nothing at all to do with anything like the realistic quality of the scripted conversations that I memorized.  After all, they were created by  experts who clearly must have known a great deal about the dynamics of social interaction – especially back when I was a teen attempting to interact with other teens and those experts were so much older and wiser.  I suppose I’ll just have to chalk it up to coincidence.  It’s not that I have been systematically taught to be even more socially awkward than I already was, it’s simply that everyone who I have ever approached and been rejected by has been an undiagnosed autistic person in need of appropriate social skills training.

The Inspirational Meme: How to Disrespect Disabled People From the Comfort of Home

How can you disrespect disabled individuals, misquote historical figures and show cute pictures of puppies and kitties all at the same time? By creating an inspirational meme of course!  After all, what are disabled people and kitties for if not to inspire able-bodied individuals to get up off their asses and achieve?

Do you have a bad attitude?  Well, rather than sitting down and seriously contemplating how you could find more meaning in your existence,  just check out a picture of a cute kid with Down Syndrome. Wouldn’t it suck to be her? And look – she’s so happy!  So what’s wrong with you?  It doesn’t matter that it doesn’t really suck to be a person with Down Syndrome at all, or that her role in life is not to make sure that you get up off the couch and make it to the gym today.   All that matters is the INSPIRATION that it brings you.

Today I saw possibly the best example of this phenomenon to date.  It was a a meme with a quote by Helen Keller.  Helen Keller, as most know, was a woman worthy of respect, an intelligent woman, a writer, an educator in her own right.  The quote was thoughtful and relevant at her own time and in our own.  The tag line accompanying this quote?  “If Helen Keller could “see” this – nobody else has a good excuse not to.”   Allow me to paraphrase – Dude, this chick was BLIND and DEAF and even SHE knew this.  WTF man?!  The brilliance of it – actually using a historical figure who was disabled to devalue disabled people – is unmatched.  Of course the creator erred in that she accurately quoted Ms. Keller, but that’s easily correctable.   I think that if they can just find a good picture of her holding a puppy it will be absolutely perfect.

So, how can you too inspire others while patronizing disabled people? Start by finding a person with an obvious disability.  None of that “hidden disability” crap unless it’s somebody famous.  The more disabled the better.  Then make sure not to mention their name so that you can assure that people only see the disability and not the individual.  Then point out that if someone like this can actually get through life everyday, and possibly even achieve something, then somebody “normal” should certainly be able to.  Simple.  And don’t forget – work the puppy in somehow.

Autism and Celebrity

Here’s a conversation starter you never hear in social skills class. What do Jenny McCarthy and Temple Grandin have in common?  No, it’s not the PhD. or  the fake boobs.   They are both celebrities who have come to be associated, in the minds of many Americans, with the autism community.  Note, I mention the “autism community” and not the “Autistic community.”  And who are these folks with their capital “A” and lack of an “ism?” Are you sitting down?  They are grown-up people on the autism spectrum.  For real.  This may come as a shock, but there is in fact an entire group of autistic people older than  Max on Parenthood.  People frequently don’t realize this, however, because the “face” of autism will forever be some tow headed little cherub who allegedly has been “lost” somewhere.  (Perhaps if they checked the swings.)

These Autistic adults are a quirky bunch.  They tend to not appreciate it when people refer to them as diseased, damaged, or defective.  They don’t like not being included in conversations about them.  They would like to be able to decide for themselves what is their own best interest.  They are demanding all sorts of crazy things like equal access to education and employment, good supports … respect.  And worst of all they don’t even appreciate the efforts to “cure” them, let alone to find a good prenatal test to assure that people like them are never born in the first place.  But don’t they know that they are part of a “tragic epidemic,” they are a blight on society, that they make their happily married parents get divorces, that they are cold unfeeling beings, that they cause cancer?  Apparently they haven’t been watching the nightly news.

Love them or hate them, these folks are who that little cherub is going to grow up to be someday.  They are actual autistic people and other people need to understand their experiences and their perspectives.  Who better to assure that happens than a celebrity right?  After all, they are experts on everything.  I don’t think that anyone who hasn’t downed a bottle of cheap gin would suggest that Jenny McCarthy speaks for adults on the spectrum so I won’t even go there.  I do find it interesting, as an aside, that many people fail to realize is how little she has in common with the mothers of autistic children who aren’t, say, Playboy models.  While you fight your IEP battles and beg your county for an aid so that your child can attend summer camp think about how much therapy all the revenue from those books could buy.  Jenny is paying for her kid’s therapy with your kid’s therapy money.  But if the books stop selling she can always get naked again “for autism.”

But Dr. Grandin is no Playboy model.  That’s true.  She designs livestock equipment.  And she herself is on the spectrum so surely she must be an expert?  Someone obviously thinks so.  Her endorsement is on every book ever written about autism except for Jenny’s. She is the “go to” person for quotes, soundbites, even HBO movies.  Don’t get me wrong.  I sincerely think that it is great that she has shown people that autistic individuals are not all Rain Man clones.  But does she really speak for other autistic adults?  Perhaps those who were born to wealthy parents in the 1950’s.  If you didn’t have your own nanny to play with you, or attend an elite boarding school, or intern on a working ranch you may see things through a different lens.  If say you were, oh I don’t know, poor, your experiences may have been different.  A lot of autistic adults aren’t in a position to access a doctoral program.  A lot of autistic adults aren’t in a position to access a doctor.  In the climate of discrimination created when an entire group of people is systematically devalued thanks to images of them being damaged, defective (see above) … well, a PhD., or even employment, isn’t always in the cards for a lot of autistic folks.  Maybe it’s time to let the Autistic community find it’s own voice rather than having someone else speak for it.