Wednesday, September 04, 2013

Elevator Diagnosis

We were waiting for the elevator, the two of us, a family with a stroller, and a man in his thirties. It was taking some time for the elevator to come. The fellow began getting a little distressed and, eventually, grumbled loudly at the elevator for being slow and then took off. We all got on and rode up in silence. On getting off one of the parents said to the other, "he probably had autism." I said, "Oh, do you work with people who have disabilities?" "No," she said, "but I read the papers and keep up with the news."



I'm wondering if 'Autism' is becoming the 'go to' explanation for any unexplained behaviour in strangers who are acting a little strange. I'm wondering if the explosion of information about Autism doesn't actually contain anything much in the way of 'information.' Given diagnostic abilities from the media people will be able to determine that:

A man, rushing to meet a friend for a movie, is frustrated at the elevator taking times. Grumbles at how slow it is and then runs over to bound up the escalator. Autistic.

A teen pacing back and forth, agitated, waiting for the taxi to take him to see his sister who'd been rushed to the hospital. Autistic.

A kid throwing a tantrum of any kind. Autistic.

I spoke once, a week ago, with a mother who talked to me about her worry that autism and the reputation of people with autism is being predicated upon every socially inappropriate or socially distinctive behaviour being attributed to it. "There's a lot of awareness about the 'word' autism but very little awareness of or interest in the life of people with autism themselves."

The public loves to diagnose difference.

Pity they're so bad at it.


n. said...

You asked the guy with the kid if he worked with autistics rather than if he *was* himself autistic. Presumably because an autistic would have been able to guess better, because a lot of us have what I've been calling A-dar.

Andrea S. said...

I think this goes to show that simply promoting "autism awareness" doesn't really do anything except entrenching stereotypes in the absence of substantial information. I'm not sure what the best answer to this is (since it's hard to adequately counter stereotyping assumptions in just a sound byte and impractical to reach large swathes of the population with anything more in depth than that), but we need a better model than this growing trend for, "Let's all be more aware that thing X exists" type of "awareness" campaigns.

Andrea S.

Ettina said...

"I'm not sure what the best answer to this is (since it's hard to adequately counter stereotyping assumptions in just a sound byte and impractical to reach large swathes of the population with anything more in depth than that), but we need a better model than this growing trend for, "Let's all be more aware that thing X exists" type of "awareness" campaigns."

Check out the Down Syndrome Society of Canada's awareness campaigns. I remember awhile back they had signs plastered all over Winnipeg showing a smiling Down Syndrome person with the caption 'Different genes, same value.'

Shan said...


Or Asperger's, which is the new black. Everyone and their freakin' dog has Asperger's.

I know people who have jumped a LOT of hoops to get a diagnosis, seemingly so that when their kid pitches a fit, instead of dealing with it, they can say to bystanders "She's on the autism spectrum." Plus there's the funding, which you need a diagnosis in order to get. Enough said.

trainspotter said...

Ironically, my daughter has low-functioning autism and (despite her stereotypical behaviors) nobody I meet seems to assume she has autism. They always assume I'm a horrible parent and that they could handle the tough moments better.

I once had a lady at a bakery hold a cookie in front of my daughter and say she could have it AFTER she said please. I explained that she was a non-verbal autistic and the lady told me that my daughter would never speak if I didn't push her. So...if I were smarter and had of thought of that my daughter would speak. Or...if my daughter would try a little harder she would speak. Clearly, this lady believed she knew the secrets to unlocking the non-verbal myth and that it would be accomplished at that moment in a crowded store.

You're absolutely right- these days everyone is an expert and somehow autism has become a label for strange behavior (and worse, the qualities in others that we deem 'distasteful') instead of a real disability that comes with a host of unique challenges.

I appreciate you asking the question... hopefully those elevator doctors will decide to leave the diagnosing to the developmental psychologists (who also get it wrong from time to time). Sadly, my pessimism tells me that they'll go on to diagnose another day.

Martine said...

It's a shame so many of us feel the need to label everyone.

Years ago my friend's daughter was spinning in circles and singing in line at the market. When someone complained my friend explained that "she's autistic". The onlooker heard "artistic" and lectured my friend on controlling her daughters creativity. Sheesh!

Just Heidi said...

We are in a shop... one of my 10 yr old daughter's favorite shops. It is full of all things girly... hairbands, pink tutu's, earrings,
1 Direction merchandise.

We are in this shop... and we observe a child around 8 yrs of age having a major tantrum. The little girl was screaming "I want a new case for my iPhone", while punching her mother on the legs.

My ten year old daughter leans into me and whispers... "She seems very frustrated. She should stop and smell the flower and blow out the candle- that will make her feel better." My daughter expressed what she observed, and offered a way for the girl to self regulate. (To me.)

They say that individuals affected by Autism struggle with understanding and/or showing emotions...

On our daughter's first day of Kindergarten, she spent an hour in the locker room, sitting on the floor with her arm around one of her peers. He was crying because he missed his Mommy, our daughter never left his side.

They say individuals with Autism have difficulty with showing empathy...

When our daughter was 3 yrs old she would take us by the hand and lead us to what she wanted/needed. If we didn't understand and she got frustrated with us- she would bite herself or slam her head into the wall or onto the floor.

They say that many individuals with Autism are Non-Verbal/unable to communicate their needs and wants. Our daughter has always had the ability to communicate... not always in the "Traditional Way" but she has always been able to communicate. It was our job to learn to understand what she was communicating to us.

Tomorrow our 10 yr old daughter will start Grade 5. She is mainstreamed in a regular classroom with her typically developing peers. She began communicating with her 'voice' when she was 6. She loves Yoga and Horseback Riding and the band
1-Direction. If you tell her the date/year you were born, she will tell you the day you were born.
When she is frustrated or annoyed... she will stop and smell the flower and blow out the candle. This is a strategy I taught her to encourage her to take deep breathes to self calm. (Complete with a visual of a flower and candle to start).

I cringe when I hear people make comments or assumptions on topics they know nothing about. I cringe when I read Facebook comments from parents of children with Autism talking about what a burden their child is. Understanding that raising any child can be challenging- but if you continue to paint your child with a disability with a negative brush- how do you expect society to view them any differently?

I love my daughter; she is the light in my heart.

P.S. We once waited 2 hrs in line at The CN Tower to take the elevator to the top. Our daughter didn't get frustrated... maybe she was mis-diagnosed? Dave did you get a business card? I wonder if I could get a referal? ;) hee hee

trainspotter said...

Um, Just Heidi... although I found your story inspirational (and I do agree that a person's diagnosis should never define them or place limits on them) your comment seemed very judgmental to me.

Not all individuals with disability have the same outcomes no matter how much support and love they receive from their environment.

Yes, some days for some of us are burdensome...I think it's human to feel exhausted when your 11 year old still doesn't communicate enough (in any way) to stop banging their head on the walls (and this is after several years of gold star therapy). What I, also, find exhausting is when others, who are not in our situation, imply that we would be more grateful if we had a little more insight.

I am, truly, happy that your daughter has the ability to push through her challenges- it's to her credit. But please be careful not to throw other parents into the garbage heap because their children were not this fortunate. You will never understand how heartbreaking it is to run to the ends of the earth, busting your butt, with very little (visual) progress to show for it.

I love my daughter for who she is- not what she isn't or what she becomes. I really don't care what label they slap on her but I do care that people can identify that her disability is a real thing and that she isn't the horrible monster they often accuse her of being. How would you feel if you were trapped in your body and had to listen to people verbally abuse you and your parents in public- you might be tempted to give up. How many of our children stop trying because the journey is just too long and nobody cares. That's the stuff that breaks my heart. That's the stuff that makes me cringe!

Anonymous said...

love the artistic/autistic confusion, i can think of lots of behaviours that get the autistic label that are profoundly artistic.
love the smell the flower-blow out the candle. will pass that on and mention just heidi if that's ok.
i come from a family of doctors, i'm not a doctor, i work in the field of disability. i've grown up in a culture of name that diagnosis when you see anything different. i've hated it and still battle to contain myself from mentally diagnosing anything that can be subjected to that process.
focussing on the difference, the diagnosis, is a way of distancing oneself from seeing the person, engaging with the person, thinking about connection and accomodating difference- as in taking steps to increase accessibility.
it's a hard habit to kick i'm finding.

Rickismom said...

I remember once sitting with Ricki in the halls of city hall, trying to get her a school placement. ... while a "normal" kid threw an absolute tantrum. I just remember thinking "If Ricki would do that we would all 'know' that it is due to her Down syndromne", right???!??
Traispotter, I hear you! I noticed early on in our support groups that older parents had a tendency to speak in discussion groups about how grateful they were for their child, how that child is a joy, etc. Now don't get me wrong. I feel the same way. BUT I made it a point to mention along with the good (like how my other kids matured as the result of having a special-needs sister)a point that I was frustrated with, just so that new parents would not think that we need to idolize the situation. Having a child with a mental impairment can be damn tough at times.(But that doesn't mean that I loved her any less.)[Tough can be frustrating, draining... but not necessarily "bad".]

Rickismom said...

Oh yeah-- and those people who come up to you in stores offering cookies to stop the tantrum... well that's the nearest I ever have come to wanting to strangle someone......

Erin Miller said...

Shan, while I can see your point and sympathize, I would also like to remind you,that some people qualify for an autism label. Back in the day when my parents were children, autism was nearly unheard of. And my father displayed all the classic symptoms. And he chased after all sorts of solutions.But treating each trait separately was like trying to move all the grains of sand on the beach grain by grain. But when I was diagnosed with autism, everything made sense for him.

An autism label brings together a group of characteristics. And some of us need it.