An interesting topic on a mailing list had me thinking: could the whole problem with the way autism is treated be because of the way it is diagnosed?
One phrase in particular stuck out: "We all know that the diagnostic criteria has nothing to do with what autism IS, and everything to do with how it LOOKS from the outside."
Bingo. That's it...the numbers are confirmed, give the person who posted the above a prize!
I've posted the diagnostic criteria in this blog before, so I'll spare you from having to read it again.
Everything in the DSM-IV classification has basically nothing to do with what autism is for those of us experiencing it in the first person (those of us who are autistic) ...it has everything to do with how others see it in the third person (those who are not autistic who are seeing autism from the outside).
This discussion actually stemmed from how autism is shown to people via "experiential workshops"...most particularly the Frend2Friend program which goes to schools and has kids wear glasses that distort their vision to help them understand what it might be like to be autistic. The question was "Are these simulations enough? Do they give an accurate picture?"
Some folks say that these only show the negative side of autism, giving more of the "woe is us" picture. Others believe that it's time to show that autism is more than just "a set of undesirable behaviours in a psychiatric diagnostic tool" and show the sensory things that are included in the deal.
The poster who had brought up the whole subject mentioned an autistic child. This child has all of those "stereotypical behaviours" but also has lots of friends. Not good little Samaritans, not little aides helping her out...but real friends. People who like her for who she is.
My question is how did this get get so darned lucky??
The poster provided some answers:
1. They were encouraged to talk to her normally.
2. They were encouraged to play games with her that she enjoyed.
3. They were encouraged to include her in activities that they could all do together.
4. Her strengths were highlighted in her interactions with her classmates.
5. She is fiercely independent and won't let people help her with anything if she hasn't asked for help.
Fascinating. These kids were taught to accept her and build on her strengths. They were taught that everyone has preferences, weaknesses and strengths and that we're all "different" (and we are when you think about it).
She sounds a lot like me in point 5: "She is fiercely independent and won't let people help her with anything if she hasn't asked for help." That's me. That's how I've always been.
How many more children could benefit if they were taught not to be dependent on others like I was? How many autistics just "give up" because of what they're told all their life about being defective, abnormal and needing care forever?
What would have happened if they were told differently?
What would have happened if the other children were taught to accept differences, build on strengths and stop focusing so heavily on weaknesses?
How many adults (autistic or otherwise) would have benefitted from education like this when they were growing up? How many would be more accepting of themselves and their own children had they been raised to be this way?
At Division Governor and Area Governor Training in Toastmasters, we were taught two very valuable lessons:
1. Value your strengths and capitalize on them
2. Stop focusing so heavily on your weaknesses...delegate them off to the people who have those things as their strengths.
If you look at those two small facts, you will see something emerge from them: this is how decent communities work.
I look at things like monasteries and other communities and I look at what makes them work.
The one constant seems to be that everyone contributes the things that they are strong at. The strong organizer organizes, the strong cook cooks, the strong motivator motivates, the strong artist creates, the strong sewer sews...and so on. And it all works together like a well oiled machine.
People are social animals. We all know that.
Our ancestors lived in communities where everyone contributed to the successes of the community as a whole. The hunters hunted, the gatherers gathered, the artisans created, the merchants sold, the leaders led, and nurturers nurtured, the healers healed, etc. Everyone focused on what they were good at and did it.
Did our ancestors have time or the luxury of "trying to fix their weaknesses" and "do it all on their own"? Likely not.
People were not expected nor encouraged to try doing something they knew darn well they couldn't do. That would be a waste of time and resources in a society that valued survival because they had to.
If someone was a really boorish or not very talkative person but was incredibly good at healing, building or something seen as a problem? Possibly. Old communities looked at what was being contributed. The unsociable boatmaker or builder may not have had a lot of friends, but he was there to build things and darned if he didn't build those things well! They left him alone and he did his thing for the community. He was contributing *something* to that community.
We were not always looking out for number one - ourselves. We did not always have to do it all alone. Yet, now we live in a society where we are all expected to be self-sufficient, to go it alone and be our own solitary community...yet we are still expected to be social.
We no longer rely on each other to be social. Look at self help books and such. They encourage women to build a savings nest egg up in case they need to divorce or their husbands die.
We do not trust each other anymore. We do not rely on each other and will not.
Yet, we still expect everyone to contribute exactly the same to the community and create our own standards of what is acceptable social behaviour and what is not.
And we write books about this and use them diagnostic criteria for psychiatric disorders which we use to single people out as "wrong" from childhood and spend a lot of time trying to fix them...and all the while damaging them more.
Anthropologists could get into this subject more than I can, of course. There are so many things with modern society that go against our natural instincts as human beings.
I want to do an opening exercise at my speech in October.
1. Everyone will stand up.
2. I will ask if anyone has any medical conditions: asthma, strokes, high cholesterol, heart disease, epilepsy, depression, etc. If so...they will sit down.
3. I will then ask if they have things like: Poor eyesight (wears glasses), needs glasses to read or drive, poor hearing, carpal tunnel syndrome, wears a leg brace or write brace, weak ankles, etc. If so...they too get to sit down.
4. After that, I will ask who has problems with shyness, low self esteem, hard time getting along with everyone they work with or live with, who is a little obsessive about something (hand washing, cleaning house, collecting, etc.), who has a poor attitude about their body (too fat? too thin? Don't like hair, nose shape, etc.), who has ever thought about suicide, who has ever thought about giving up, etc. If si...sit down.
5. How many folks are tone-deaf, have brittle nails, acne, are pigeon toed, get cold sores, have varicose veins, get stressed out at work, hate their boss, etc.? (Small abnormalities) If so...sit down.
6. I'm expecting that very few people, if any, will still be standing at this point.
Then I will say "Right...now that we have determined that only (# of folks still standing) are perfectly normal...which, is surpisingly only (state statistic % of normal vs abnormal based on result) of the population of this room.
This would make "normal" quite 'abnormal', wouldn't it?"
I will then ask the questions and have people raise their hands and keep them up:
1. "How many people have ever rocked back in forth while crying over something horrible or having abdominal pain or sickness?"
2. "How many people have ever retreated to the bathroom or had to leave a room because you were so angry or stressed out that you could not stay in the room?"
3. "How many people take solace in a little peace and quiet after a stressful day? (i.e.: having a long soak in the tub, or lying down in a quiet dark room, or listening to lovely music while reading a book)"
4. "How many people here have ever said or done anything completely irrational when really frustrated or angry?"
5. "How many of you have ever felt the urge, or even acted on the urge to strike someone or something when really angry or upset?"
6. "How many of you have ever done that little "bang your head against the wall or a book" gesture when someone is being completely unreasonable or you're just frustrated beyond reason?"
7. "How many of you have ever resorted to self-destructive behaviour such as taking drugs or drinking alcohol at any point in their lives for whatever reason? (yes, the teen years count here too...so if smoked a jay or drank a shit-mix as a teenager, put your hands up!)"
I'm expecting a lot of hands will be raised at this point.
"Congratulations folks, you've all just confessed to engaging in the exact same behaviours you are trying to train out of your autistic children and clients...and for the exact same reasons your autistic clients and children do them!
How does that feel?
Now that we have everything in perspective and we're all on the same page, let's move on...."
"For those who want scientific evidence of this, I'll give you the stats of what I just did after this presentation." (take notes of the stats on a white board based on how many folks are in the room and what they sat down or raised their hands for)
...and then I will start my speech.
At that point, I will make the disclaimer that the rest of this speech is based on my own experience and a few conversations that I've had with other autistics. I cannot speak for all.
I am here to say what worked for *me*. But I am also here to put things into perspective for you.
We spend so much time focusing on what is so wrong with people. Almost every child that I see has some sort of problem: ADD, ADHD, Autism, Asperger's, asthma, oppositional personality disorder, PTSD from abuse or divorcing parents, etc. Is there a normal child out there at all?
But, back to autism...and the way it is diagnosed.
If the DSM-IV must be used, the use it as a preliminary tool. OK, the behaviours are there. This person is definitely autistic...now let's move on. Why are these behaviours manifesting?
What is the source of it? What is so different about this person that they are doing this?
Some autistics say they just perceive and see differently...it's not an abnormality.
By most diagnostic criteria, anything that adversely affects a person's functioning or quality of life is a problem.
My stomach problems, anxiety, hypersensitive hearing, smell and touch; poor eyesight and such *do* affect my quality of life and *do* affect how well I function as the person I want to be.
When I'm having panic attacks all the time, I cannot work. I don't like feeling nauseous all the time, nor do I like always being able to smell and hear *everything*.
It's affecting my quality of life and has done so all my life. I don't like that. That's why I react with the normal human reactions to stress. Stress is constant in my life and I'll be the first to say that it *sucks*.
No rose coloured glasses here, folks. There are aspects of autism that I quite frankly hate.
On the other hand, there are aspects of being autistic that I love too:
1. I like my photographic memory.
2. I like my passion for things in my life. It's sad to see so many NT's missing out on the sheer amazingness of a perseveration or the beauty of the world that is experienced at a higher frequency than yours!
Have you ever felt peace while petting a cat or true bliss when smelling the trees and experiencing the full spectrum of sensations of a day out in the mountains?
3. I like my ability to see things from an objective point of view without my emotions getting in the way.
4. I like being able handle emergencies and real trauma with cool logic and no emotional overload because I've had so much practice being under constant stress that real stuff that only happens once in a while is nothing to me.
5. I like being able to draw, to pick up music theory or how to play an instrument within minutes of being exposed to it...I like being able to experience music in a way you could not even hope to know!
6. I like being able to learn faster than most NT's when I'm interested.
7. I like that I can find solace in being by myself...I'm not addicted to social contact to live.
8. I like that I'm 32 and have none of the facial lines other 32 year olds have because my face hasn't been wrinkled by constant emotional expression.
9. I like my different ways of seeing and experiencing things.
I would like for those folks doing therapy to stop focusing on making children into something they're not through the same techniques cults use to brainwash people.
I would like for therapy to actually address those things which really are a prolem to *me*...not *everyone else*.
You do not live in my skin.
You do not digest food the same way I do.
You do not react to medications the way I do.
You do not deal with constant anxiety...or do you?
If you want to help me or your own child...help that which I need help with...not with what you want help dealing with because you don't understand what's really going on.
It's not bad, it's not good...and it's not being approached properly, in my opinion.
Just more thoughts toward my speech.
(This is going to be incredible if I can get all my thoughts sorted out.)
