Tag Archives: empathy

Friday Night Funnies with a bunch of autistic guys

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Jose Jalapeno on a stick

I sat by the fireplace listening tonight… quietly… but laughing laughing laughing inside, at times just marvelling at the magic… as I wished, as always, that I could record the after-dinner conversations going on in the room. Some of the conversations were an exchange between two friends, some were a give and take with characters not visible to me, and some were just musings, no audience necessary.

These guys are FUNNY.  Deliberately funny.  They play off of each other like a seasoned comedy team.  They take each other’s quirks and they run with them.  They accept the jokes about their own quirks that others are making, and they make them even funnier.  They interject pop culture humor, so SouthPark and Family Guy and Jeff Dunham are often partners in their act.  (…Jose aka Jose Jalapeno on a Stick thinks his nickname is pretty cool.) And when the comedy routine takes a turn for the intellectual as Ray expounds on a joke in excruciating detail, everyone yells NO MORE, RAY!! and the comedic exchange returns to the ridiculous.

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There’s magic here. We love and accept some of the guy’s imaginary friends.  The imaginary friends are funny too.  They have names and voices and places they like to sit or sleep and rules they think we should all follow and lots and lots of things that they do that are WRONG and it’s a good thing the imaginary friends can’t really get in trouble because EVERYONE would get them back for it.

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and I just can’t imagine anyone else’s dinnertime being this much fun.

Of course… things are not always this way.  Sometimes a glance at the wrong instant becomes a serious insult, or the timing of a joke sends anxiety through the roof.

But there is something about Friday nights.

Maybe it is the anticipation of a lazy Saturday morning with bacon… and NO STAFF in the house.

Or the complete and utter shutdown after a week of intense thinking about how to load a dishwasher … or worrying how not to drink more than your share of DSC_0192orange juice … or the guilt about how you should save money towards something practical when all you want to do is coerce your support staff to drive to WalMArt IMMEDIATELY because that $5 in change in your pocket needs to be spent on a LEGO or there is no future and you can’t relax until that money is GONE.

OHHHHH the pressure!

DEEP BREATH.  It’s Friday night. All those things you tried to learn this week, already a distant memory.  Let the dishes pile up.  Bring on the OJ.

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Fear and the fragile friendship

New York ComicCon 2012

Michael called tonight… thankfully at a very reasonable 730 PM, not midnight.  He touched base with Ray, as he does almost every day (too often at midnight).  They share the day’s HALO/Bionicle news, the latest on the Disney Star Wars’ purchase, and the plan for the next get-together, as distant as it might be.

On the Farm

Michael and Ray have been friends for four years.  They met by chance at the Goshen Country Fair, where Michael and his family volunteer each year.  At the time, Ray was living independently in the same town. They struck up a conversation, found they had many interests in common, were able to plan and get together on Friday nights for the next two years…and the rest is history. Michael lived here at the Hill for a year while he was finishing up his transition program in high school, and now lives back home with his family about 40 minutes away though he makes it down to the farm on weekends regularly for HALO marathons….

These two best friends share their interests, their possessions, often their money, and their secrets… and they happen to also share an autism diagnosis. They help each other through their sensitivities, annoying habits and meltdowns, and almost always remain true to the other, no matter how disruptive they become.  They have two very very different dispositions, yet it works….  They are a couple of lucky guys, and they know it.  Many folks, with or without a diagnosis, could benefit from their recipe for true friendship.

What is this recipe exactly?  Patience, trust, familiarity, tolerance, compatibility, convenience…. and TIME……all of the qualities that one would guess….. plus a healthy dose of luck and  ’perfect timing’ no doubt.

Now if only we could replicate this recipe again and again.

Too often, what I see with folks on the spectrum and other disabilities is a desire for friendship, but an overwhelming fear of intimacy, change, and sensory overload. Confusion about what friendship is, and what expectations are involved. An ambivalence about leaving that comfort zone where one can immerse themselves in special interests without interruption…. and a need to be alone to control all input. Sometimes it can be just a simple preference for convenience over company.  The fear of disappointing, and disappointment. The fear of the unknown. The fear of vulnerability.

FEAR.  That’s a big one.

Things don’t always go as smoothly as Ray and Michael, when forming a new friendship.  And this week, I have a new respect and appreciation for the bond that they share, because I tried to help a couple of other guys get started with a new friendship.

Check out this wonderful movie about a friendship like this…
http://www.youtube.com/movie?v=tDJZO-QUS2A&feature=mv_sr

Several months ago, nurturing these types of friendships became my livelihood, when I went back to helping others …. young folks just like Ray and Michael and the Juniper Hill guys….  set up independent living in the community.  It’s not so difficult to find a place for people to rent, or to make sure they have the supports needed (help with cooking, cleaning, budgeting)….. or even to find two or three people who want to live in the same place at the same time. Sounds complicated?  It’s the easy part.

After the furniture is moved in and the kitchen is stocked, real life begins and new housemates unfamiliar with each other have to spend lots of time together. It’s not so difficult, when the support people are there too.  Helping with decisions about what to eat for dinner, where to move the couch, what to watch on TV.  Helping with facilitating conversation, especially. But then the support people leave, and the chores are done, and no one is reminding anyone of what ‘s next.

It’s scary, but it’s fun.   It’s confusing….but it’s exciting.  Its empowering, but at the same time old insecurities surface.  It’s evolving, and it takes time… lots of time… for trust to develop.

And sometimes before that trust develops,… the whole thing just blows up. And then you have to help them pick up the pieces, and figure out how to help them move on. And that has been my life these past two weeks.

Ray and Michael, you sure made this look easy.  Keep taking care of each other, you are truly lucky.

Autism Acceptance… begins at home, here.

Six guys with annoying habits and quirky interests.  Six guys who have difficulty accepting other people’s annoying habits and quirky interests. But these guys love each other, they really do. They miss each  other.  They help each other.  They forgive each other.  They are good friends, loyal friends.  They ACCEPT each other……

Their musical tastes range from death metal to christian rock, 70′s music to broadway musicals. Someone gets up at 630AM and bangs around in the shower next to another’s bedroom who went to bed at 2AM.  One makes loud sudden sharp whooping noises when it is least expected, causing others to drop to the floor in shock, hands covering their ears.   One collects Barbie dolls and designs clothes for them.  One has Tourettes and swears often.  The Christian guys hate swearing and dislike any behavior that has a hint of femininity. Another melts down loudly at the word ‘WAIT‘, which is inadvertently repeated by everyone else, several times every day.  Two are very religious, another is an atheist and recites the historical significance of every religious event that refutes Christianity.  They are determined to convert each other, and very sure that they are right and the other is wrong. A deep monotone baritone that drones.. on and on and on about scientific facts in great detail is ever-present.  Often, impulse control is non-existent and they steal from each other.  Accommodating food sensitivities always makes someone else unhappy. Everyone believes in a right way and a wrong way for everything. But no one agrees on what that is. Television preferences include Anime cartoons, Sci-fi, History, Discovery, old Abbott and Costello, chick flicks with Brad Pitt or Tom Cruise, Mr Bean, and the Weather Channel.  No one agrees on what to watch.  Oh, wait a minute, except Mr. Bean.  They all agree.  Everyone thinks Mr. Bean rocks.

So, about this autism and empathy thing….

People with autism lack empathy.

Really?? ….I’m confused. Do the people who say this actually live with a person with autism… do they spend a lot of time getting to know people on the spectrum?  Have they experienced sad events together with their friends who are autistic?

I have.  Many many times over the years.  I’ve seen their anguish when a friend or animal is sick or hurting…. and I’ve seen how quickly they respond when a stranger needs help.  I see …and yes, I can feel…their pain when they have unknowingly hurt someone’s feelings or disappointed someone that they care about. I hear their apologies, and those apologies come from a place so deep and sincere that I expect that any second they will shut down completely out of sheer empathy OVERLOAD.

Lack empathy?  Not a chance.  But I do understand why so many neurotypical folks PERCEIVE a lack of empathy in their students or acquaintances with autism.

The other night around 10… Ray and Michael grabbed the lantern and headed up the hill to Ray’s house.  Down at the main house, I was checking Ray’s mouse live- trap, since we have had an influx of cute little meadow mice lately with the coming of spring.  I opened it up, and one of those cute little meadow mice jumped out of the trap and into the sleeve of my shirt and ran up my arm and onto my stomach… under my shirt. Now… I am not afraid of mice. Or snakes, spiders, rats or scorpions.  I live with them, Ray collects pets like this. I like all these critters almost as much as Ray does.

courtesy of bluebison.net

But it caught me by surprise and I screamed… LOUDLY.  and CONTINUOUSLY for what seemed  a very long time… because I could not get the thing out of my shirt and it was running around on my body.  Andy and Jose just watched me jumping around… and afterwards, Andy says ‘WOW! You scream like a girl!’

Ten minutes later, Ray and Michael return, carrying LEGOS of course.  Still excited, Jose and Andy tell the mouse story…. and Michael says…..

‘we heard you screaming all the way up the hill when we were walking up.  It sounded like you were really hurt, or like something was attacking you’

and I said ‘then why didn’t you run back?’

and Michael says..’ well  we were pretty intent on finding this LEGO piece that we were missing.  We’re back now.’

Uhh OK.

This is not lack of empathy.  It’s something else, hyper focus …or something.  To their credit in this particular case, I truly believe that sometimes the guys here assume that I am some kind of super human that can not be physically hurt… similar to a Bionicle or HALO individual perhaps, guys?…. (perhaps it is my ‘Bossy Big Sister‘ New Yorker attitude).

I am neurotypical but have lived with adults on the spectrum for 30 years. This kind of focus is going on all the time here.   Often, a problem will arise around a disruption of focus…of hobbies… or computers, televisions, or music…. something in the present environment that has to be shared with others.  And when this kind of focus is interrupted, these guys often have little tolerance or understanding of the person who is interrupting them.

I have tried to get them to explain to me how they are feeling, but I’ve never once succeeded at the time it is happening. It is during these instances that you see another side of these generally kind and gentle, compassionate guys. No matter how many times they are asked ‘how would YOU feel if …… ‘   or… ‘don’t you think it’s time for someone else to get a chance, you’ve had your chance for 4 hours’… there’s just ALWAYS a reason (actually, many reasons) why they shouldn’t have been interrupted because what they were doing was very important. So sure, in that particular moment, there is not much empathy… anywhere.

but by the next day…. they always rationally discuss possible solutions to the problem… and they apologize to everyone involved.

So am I missing something here?  Is this what is meant by ‘lacking empathy’?  I respectfully disagree.

April is Autism Awareness month, and tomorrow is April 2, World Autism Awareness Day.  The numbers are out and autism is now 1 in 88 births… we are past ‘awareness’.  Isn’t it time it became ‘Autism Appreciation and Acceptance’  instead?

And that is my rant for the month.

The border collie puppies visit the Hill

P.S. And speaking of empathy… in case you missed it, the family dog passed away recently, and I blogged about it here

The Loss of a Pet

Living on a farm… death happens.  

It happens fairly often, actually.  We have five new baby chicks, and one of them drowned in the waterer last week.  One night a raccoon got into the adult hens, killed one of them and left most of its body.  Ray has lost pet mice, tropical fish, and a very long-lived crayfish.  Last year, our old goat passed away. 

But none of these events were anything like losing the family dog over Christmas week this year.  Soon afterwards, I wrote the story of his last days because the guys’ reactions were so moving.  Here it is below.

Nemo passed away yesterday.  Our old, smelly, incontinent, hairless chihuahua mutt who lived in a crate in our dining room for the past year.  No one knows how old he really was… he had been rescued from a dark basement, starving and without water… and he became part of the dog family on the hill after we read his sad story on Craigslist.

His basement experience led him to drink as much water as he could find…. hence the incontinence when the gallon of liquid moved through his tiny body.

So he lived in the crate….

But a funny thing happened. This smelly and quite unattractive creature somehow won the hearts of these guys here on the Hill. Jose always entered the house calling to Nemo, so he could hear him howl.  Michael lifted him out of the crate each evening to sit in  the rocking chair with him and tell him stories of the day. The dining room is the center of social activity, and everyone was in tune with Nemo’s needs.  ’Nemo do you need water?’ ‘Nemo needs to go out…..get him outside quick!’ ‘Where’s Nemo, he’s been outside too long’. ‘He’s cold’.  ’He’s hot’. ‘He’s still hungry we need to feed him more’. ‘Give him chicken’.  ’Nemo’s at the door, someone LET HIM IN!!!!!’

Six guys with social issues, coming together over an unlikely mascot.

We all watched Nemo fade away these past weeks; he was treated with such gentleness and compassion.  And when it came time to say goodbye, everyone came together to prepare his gravesite, our first here at the house.  The guys dug a hole together, taking turns…. the goats and pigs watching from the other side of the fence.  We told our favorite Nemo stories and laid him gently down.

Then Jose howled.  And we all joined in.

And today, the day after, the guys are still howling… and visiting Nemo’s grave.  And saying how much they miss him… and giving each other HUGS for comfort.

Genuine empathy transcends all social missteps.  Social issues on hold for now.

Nemo and Kit 2010