Tackling the conflict issue - how do we handle differences of opinion when it comes to autism?

An amazing thing has happened on a newgroup that I'm on...an abservation was made about the conflict between autistic posters and NT's.

There is a lot of anger out there and it's being broken down logically. Good questions are being asked and it will be very interesting to see how this turns out.

Here is my response: (The other poster's comments are in bold)

Absolutely, I agree with [another person] that some autistics can be just as guilty of abusive behaviour as NT's. As many apparent autistics made my killfile my first day here as apparent NT's did.

I'll be the first to admit that and I apologize if I have come across this way (I know I have).
Looking at it from both sides: (an exercise of "theory of mind" - empathy - for me here, so please let me know if I'm off base...)

Parents, particularly NT Parents - They want to help their kids, first and foremost. They don't have the luxury of knowing what may be going on in their child's mind, perception or experience and thus have to rely on the information that is currently available. If they are on the Spectrum themselves, they may have a better idea.

Unfortunately, given that the information is provided by people mostly NT professionals) who *also* don't really know what the underlying story is with autism, that information is lacking in a lot of areas - in particular the core issues (sensory perception, experience, sensitivities, etc.)

This leaves parents in a sticky spot - what to do for their children with the information they've been given? One needs to believe the professional, university trained types who make money doing this stuff, even if they don't understand it completely, right?

By normal logic, one would say yes, so that is where many parents are coming from.

Then we have the "bad press" given to us by the media. Parents also have to deal with the stigma, misinformation and supposed devastation in this case. Hence, why we get the parents who come out and say self-esteem damaging things like "My child has been stolen from me" or "love the child, hate the autism" or "This is a Tragedy/epidemic/devastation (take your pick)"

Now, the stolen away thing is because of the one little factor of autism which generally shows up at around 18 months or so - the "regression", named such because of a child's developmental progress that seems to halt in its tracks and go in reverse. Again, this is what the parents see.

Perhaps this is because of the ordinary initial wiring of the brain that goes on between birth and about 5 years of age. At the age of 18 months, big changes are happening. Expectations are changing and ways of perceiving the world are being hardwired due to experience, etc.

Perhaps 18 months or so is when most children's brains are wiring for social development, etc.

Perhaps the autistic brain wires itself differently at this time. Who knows?

Some researcher might find this out one day and publish it. Until then, I'm just theorizing based on what I know of developmental neuropsychology (fascinating stuff, by the way!).

Parents also have to deal with the frustration of not being able to communicate with their child for a number of reasons, the primary one being that they don't know how...just as much as their autistic child might not know how to communicate with them either.

It must feel like taking in a person from another country into your home who doesn't speak your language, has very strange customs and is having a hard time with acclimatizing oneself to the new environment.

There is also the frustration of certain behaviours which are unusual (stimming), abnormal (eye contact) and sometimes unhealthy (smearing faeces - ick).

Yes - I can see a lot of frustration going on with parents! Yow!

Now we look at the autistic individuals - Here we have a group of people who know what autism is for them. They live it every day. Autism is who they are. They can't change it and neither can anyone else. They know how they see things, experience things, feel things and usually know why they do what they do.

Looking at what I read here every day, none of these people are stupid, out of touch, mentally unaware of what's going on or unable to communicate their feeling, needs, etc. in writing at least. Most of what is written here may be angry, but highly intelligent.

For myself as a highly intelligent person (at least I'd like to think so), there is nothing more maddening than to be written off as "stupid", "unaware", "retarded" (yes I know...the dreaded R word), "defective", etc. It's even worse when people think you've been taken away from them or call your autism an epidemic. It's quite insulting to an intelligent person, actually...so I can see why the anger is happening.

For myself, I feeel a lot of anger based on my own experience. I know from my own experience that the "recommended" therapy for autism (in thise ABA) didn't do a whole lot for me other than make me suppress who I am and what my coping skills are. I also know that the reason for this is a major lack of understanding on the therapists and researchers' parts of the "big picture" when it comes to autism.

They diagnose and treat autism based on what they *see* - which is a bunch of wierd behaviours and can be trained out.

Unfortunately, behaviour modification will work on changing anyone, because it is targeting the base functions of the brain - instinct. Training a non-verbal child is much like training a dog. Without the ability to communicate, one has to resort to appealing to the instinctive reactions to reward and punishment to "program" the desired behaviours.

This is why ABA and similar therapies "work" but do not entirely "help" the autistic child.
I grew up angry because my basic needs were not being met by those who were supposed to provide them: my parents and society. They couldn't help it because they just didn't know, but my anger was still there. (Still is)

Then there are all of the therapies...some of which are dangerous (chelation comes to mind), which anger most of us even more. Then you hear of all of the news stories of parents or professionals killing autistic people. That's bound to boil some autistic blood and generate even more anger.

If I had a nickel for every absurd "theory" I've seen about autism, I'd be one rich person! It's irritating, really, because these theories are being generated without anyone even bothering to ask *us* for insight.

This then leads to another irksome thing: Autism societies. They claim to "help" autistic people but they constantly ignore or even push those of us who are willing to add insight out of the picture. Granted some of us are not too "diplomatic" about it and I think that should change.

On the same token, I think it's time these folks started listening up. "You want to help? Listen!"

Many here are writing quite coherently. Many here are sharing opinions. Many here could really help a society if they would just *listen*. It's annoying being ignored for so many years.

Then you look at intelligent people again who know that they think, feel and experience differently. They research and find that others in history are similar. Autism is not such a new thing. It wasn't really seen as a medical "problem" until the mid 40's.

These intelligent people also know that, aside from their challenges, they have a lot of gifts. I know I have a lot of amazing abilities, passions and such. Would I want to see people like me cease to exist?

Would I like to see them genetically engineer people like me out of the world?

No. And I don't think other autistics do either.

There forms a natural divide at this point, between Autistics and NT's. NT's want to eradicate autism. It is a disease, a problem and it impede's their child's "progress" though life. People have to take care of them, it costs money to do that, etc.

They want to research, find cures, stop it before it starts, etc. A natural thing to do when one perceives something as a horrible disease, right?

I don't know about you, but I'd like to see things like cancer, Huntington's Disease and many other painful or debilitating afflictions be eradicated. I don't want cancer, thanks! If I were to get cancer, I'd be totally devastated and want to eradicate it from my life too.

NT's equate Autism with things like cancer. It's natural for them to do so. Autistics, of course, are intelligent, perceptive and often proud of their talents, gifts and such. They live as Autistics every day. The idea of eradicating autism is as abhorrent as someone wanting to kill offf an entire race of people fromthe planet.

To them, the idea is Genocide. Plain and simple. No one wants to be the target of genocide, do they? I know I don't! It may sound absurd, but it's true.

Nobody wants to be treated like they were the evil of the earth that must be eradicated, do they? I know I don't!

Autistics are *very* aware of what people think of them.

That's why you see such angry comments. It's like there is a war going on - NT's versus Autistics

This is what makes the whole autism community so unique!

Cancer patients and their families all want the same thing: get rid of the cancer. Now. It's painful, horrible and often fatal. Bad.

Diabetics would also like to see the end of their diabetes. Their families agree. No more needles, pills, watching one's diet, worrying about blindness, amputation of limbs or early death? Awesome!

Then you have autism....

Parents and society want it to disappear just like cancer or diabetes because they see it like that. Autistics don't agree most of the time because they do not see it like that.

Although, I think many autistics would agree that they would like to get rid of the negative aspects of autism without sacrificing their individuality and amazing minds/skills! Like I said...I would like my digestive problems to go away!

So, now what?

Well...you get what goes on here all the time: differences of opinion...strong ones.

I think what needs to happen is some two way communication. A mailing list or e-group is the perfect place to do it, since Autistics do have a perfectly loud and understandable voice here via their keyboards. NT's and parents, etc. are also using the same method of communication.

We have an equal medium of communication here, unlike IRL (in real life) where one may be speaking while the other is typing. We are all typing here. We're all on a level playing field, which is rich ground for two way communication!

How about making communication two way?

Autistics curb the anger and be logical only if need be. No need to abuse. No need to be overly nicey-nice wither, just cut the negative emotion out - I must do this too, so I'm not excluding myself from my admonition!

I resolve to be more objective when replying.

Parents/professionals - give us a chance to explain. If need be, put your emotions on the back burner. You're going to get blunt replies. You'll likely get angry replies. Try and look behind the anger.

Just my thoughts, of course. :^)

The question is: How does one overcome widespread misconception--especially in the face of well-funded advertising campaigns spreading the misconception--without evoking an emotional response?

That is the question, isn't it? It's a big one and would take a *lot* of work to remedy.

That's one to ask - how do we do this?

I'm doing it through the speeches I give at professional conferences and such, as well as by running a support group for parents, professionals and autistics in my hometown. We all get together on equal ground and have a lot of fun learning about each other.

For some reason, people seem to have strong emotional attachments to their misconceptions.

Yes, we all fall victim to that wonder of human nature called the "ego"...that litle part of our psyche that needs to be "right".

It happens all over the world with differences of opinions/ideals/beliefs/values - miscommunication, arguments - all the way up to wars. This little human folly is a big thing at times.

[This is very exciting to me for some reason!]

The Question Arises - Is a child who acts normal after therapy really "cured"?

I saw a post on a newsgroup from a person who said that a child in the family had been pronounced "cured". The child had done so well at therapy that the child no longer met the DSM-IV requirements for Autism.

How wonderful for the parents...to hear their child is cured because of behavioural therapy!

How awful that professionals are claiming these kids are cured just because they "act normal"!

So...was said child "cured"?

I'm very glad this person asked, actually! It shows this person cared enough to get some more answers!

Here was my reply (it's blunt, but well-meaning).

_____________________________________________

They've succeeded in getting [child] to put on a good act of suppressing [child's] own issues and pretend to be a normal kid. That's all they've succeeded in doing.

This child is not cured. Don't let them kid you and don't kid yourself.

I wasn't even though I was in the same situation by the time I was 6.

Everyone thought I was cured too. My mother was in for the shock of her life when I hit puberty and had problems, and then hit the age of 18 when the stomach problems started getting bad again, which brought out the undesirable behaviour.

By the time I was 24, the unresolved medical issues almost killed me and my behaviours were really bad because I didn't know how to cope with the pain and illness I was feeling. I didn't eat or drink anything for nearly 3 months. It's a wonder I survived. The anxiety went through the roof and my mother lamented that I was "becoming autistic again". Fortunately, I was living on my own, so I could just ignore her phone calls.

That's when I went online and learned that autism cannot be cured...that all I had learned to do with all those therapies was how to suppress my own feelings and reactions without being taught how to effectively handle the issues I was having.

If anyone ever wonders why I have such a problem with behavioural therapies and such...that's why.

They don't treat *everything*...and certainly not the most important things. Pretending to be normal doesn't cut it after awhile. I found this the hard way.

It all came back and bit me on the butt pretty hard when I was 24. I pray this doesn't happen to your family member when those newly learned behaviours aren't helping [child] deal with the core issues that have never been dealt with and may become major problems in adulthood.

If that is the focus, if this is what is considered a cure...then the medical profession is seriously failing people on the autistic spectrum.

Miserably.

...And parents are paying lots of money for this damage to be done too!

For what? So their kid will "act normal" and be social?

Do we ask diabetic, epleptic or kids with cancer to just "act normal"?

Do we force them to deny their physical symptoms and just put on the show of being normal so that others don't have to deal with it?

Do we force colour-blind kids to "pretend to see colours"?

Of course not! What a ridiculous notion, isn't it?

....So why do we do it with autism? That's my question.

Because it's being diagnosed based on what others *see* (a bunch of behaviours)...*not* on what the child is actually experiencing (which is actually a lot more than just a bunch of behaviours in most cases).

It's not right. It's not ethical and it's certainly not beneficial to *anyone* in the end. Not the person, not the family, and not society.

One can only deny himself for so long before it all catches up.

To deny someone else what is really needed to improve his or her quality of life in *all* aspects (not just the social ones) is nothing more or less than criminal.

(Yes, I do feel strongly about this.)

_________________________________________________

I got a reply from the person, thanking myself and others for the opinions and was very nice about my blunt reply. Basically, the child's parents had not been told that anything could crop up later. (Are they ever?) The parents would be interested to know what may happen later on.

So I was nicer when I wrote back:

_________________________________________________________

6 is still a good age. Actually...with [child] 'doing so well', your relative may be able to question [child] on things such as headaches, queasiness, vision problems, sensory issues, frustrating events, etc. [Child] might actually be able to answer, given the right questions. Finding any core issues does require some detective work, though so parents should be prepared to do some gentle "digging".

For me, I always felt nauseous, but because I always felt that way, I didn't know that it was a bad thing, and that it could be helped. I thought I just had to suffer with it all the time because everyone else likely did too. For years, I told Mum that "my throat hurt" since nausea seems to manifest itself in my throat. I couldn't make the connection to stomach until my late teens.

Same with the headaches...I thought everyone got wicked headaches every Sunday until they started happening to me every single day when I was 14. I finally told my mother after years of this and all the testing was done.

Your family member might not know to ask for help because it may be just 'normal' for [child] to feel a certain way, which causes the stress but [child] cannot articulate it well.

In your family member's case, [child] may have a racing mind (millions of thoughts going through one's head at once that he can't shut off), digestive problems with certain foods, headaches, sensory things like hypersensitive hearing, smell, etc. Buzzing lights or noisy vents may be a problem, etc.

[Child] may also have allergies or food intolerances which don't immediately react, but may do so over time. For example: I have this problem with anything that has soy in it. I can eat it for a while in small doses, but it builds up in my system and makes me quite sick after awhile. Caffeine on the other hand reacts right away with me. I immediately feel the illness and such that I get with caffeine.

These things are small and probably don't seem like much individually, but they do add up eventually, which causes a lot of stress and resulting meltdowns or problems in behaviour (naturally, this would happen to anyone).

One can only take so much 'overload' before one just can't do it anymore. It's like having a bunch of people bothering you at work all day until you just want to scream and leave the building.

That's where you'll likely see frustration and what professionals call "regression" into coping behaviours as time progresses.

Frustration may also stem from things in school as [child] gets older - kids being bullies, subjects at school that [child] may not be good at (Math was my big problem - I just couldn't 'get' it). sensory things such as the buzzing lights, etc. Grade 1 isn't so bad...but watch with the later grades. For me it got worse each year.

Kids pretending to be normal, thanks to said therapies, will hold these things in for a very long time before a big meltdown hits and no one can figure out why.

The small thing that seems to trigger a meltdown, may be only the final thing in a long line of things that have been adding up. The final straw, so to speak.

It's best to keep an eye out for that.

> I
> don't get the impression from [family member] that anybody's ever informed them of
> anything like what you state here, and that's terribly unfair if yours
> is a common experience for "cured" autistics.

No one would have informed your family member of this. No one told my parents either.

Why would they?

The problem is, most professionals are still looking at outward "signs" or behaviours. They're still not seeing the whole picture.

The signs go away, therefore the child must be cured, right?

I only found out that is not the case because it happened to me hardcore. It was definitely a shock to my parents who thought I was "cured" too! Who would have guessed that this might be a lifelong thing?

What a surprise it was when I found out autism is much more than just a collection of behaviours. It took me a long time to realize that my sensory, digestive and "racing mind" issues were actually my core issues which triggered my "behaviours". Working with those things and finding ways to help myself actually proved to be more helpful in the long run.

However, one thing my mother *was* told was that there was the possibility of regression once puberty hit. (Again...behaviours only)

There's something else to watch for: puberty means another re-wiring of the brain for all young people. In the case of autistics, who are already differently wired, this may a good or not so good change.

It actually was a good change of wiring for me. It went on from about age 11 - 24. Things improved a lot once everything was all sorted out. I still have my issues, but they're nowehere near as bad as they were when I was a kid because I'm learning to deal with my core issues positively and effectively for me.

Some folks have worse issues after puberty. It's kind of a crap-shoot for each person. Luck of the draw, so to speak.

_________________________________________

I love it when people ask these questions on the autism mailing lists which are largely populated by autistic people. It's amazing what people are not being told with regards to the therapies their children are subjected to!

By asking other autistics, it means these folks actually care enough to know more and listen. If more people (especially professionals) would do that, I think there would be some truly great things happening for autistic people of all ages!

Just my thoughts on a very hot Monday in July!

More Notes - Autism Diagnosis - Community - Positives and Negatives

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.)

Ideas for My Speech in October

I'm exhausted due to the fact that I've not been sleeping too well. Too many thoughts going on my head - a normal occurance when I've got a speech planned.

The speech I am giving on October is on the topic of "What worked for me growing up", a speech/Q & A period.

I'm sure the behaviourists are looking to hear something good about ABA, etc., but I have not much to say that is good.

Anyway, this post is just a gathering of thoughts and ideas. Probably not fun to read, being in point form, but perhaps it will at least ensure that everything is written down which may quiet my mind tonight. (at least I hope so)

Some categories I am thinking of touching on are:

1. Therapies - in my case, ABA - what did I get out of that, anyway?

• Well, I can pass myself off as normal. That's about it. My underlying problems have not been dealt with and a lot of them came to bite me on the butt in my mid-twenties.


• I got this irrational fear of things being thrown around me (see the balls story and my eyesight)


• I also got left with quite a bit of PTSD because of it


• However, when I get my Oscar for my outstanding performance as an autistic playing the part of a NT, I'll be sure to thank the ABA therapists. (Hey, Dustin Hoffman got one for being a NT portraying an autistic guy in Rainman, didn't he?) As for everything else, they didn't help squat and I will not recommend this form of behavioural conditioning as a treatment because it is not a treatment. A treatment would address the underlying issues! ABA is simply an extreme educational tool.
  

2. Schooling - Academic learning, bullying, teachers, etc.

Ah school..the bane of so many children around the world. Some hate it, others would kill to be educated. Like many autistic children, my experience with school was less than stellar until I reached grade 11 and switched schools.

Childhood is the time to learn. There is no question about that. The mind is more open to learning at a young age, and children need to learn in order to have a decent adulthood.

Some points that I would make to parents and educators of autistic children

• Social skills and academics - For most kids, this isn't a problem. For autistics, it's a case of one or the other at one time, please. Trying to learn academics and social skills is not easy in our case. Look at how many of us get bullied. How can anyone concentrate on Math or Reading with all that going on??


• Virtual School, home schooling, private tutoring...hell, even a governness! These are options I would consider. Most parents cannot do this, however due to the high cost of living and the need for both parents to work. (Why not use that money the government gives for "therapy" - which doesn't work anyway - and use it for a beneficial educational option instead since ABA is just education anyway??)


• "But what about the social skills?" parents ask. "How are they going to learn those if they don't interact with other kids??" My answer: You don't learn adequate social skills in school. Period. I've been there and what I learned how to do was fight. I got really good at it, but I did not learn anything to do with social skills there. As with any other institution, you learn how to survive in the institution, even if it's not how the real world works.
  
• I learned my social skills at extracurricular activities - Summer community programs, dancing lessons, Pathfinders (the next step from Girl Guides), playing with the kids in the nieghbourhood. I always found that kids in the extracurricular programs were much friendlier and more open to accepting people. Perhaps this is because they were not in dreaded "school" that they already hate and are already cranky about. They were pursuing activities they enjoyed with other kids who enjoy those actrivities. Community groups tend to be smaller and more "controlled" anyway. Less stimuli to deal with.


• "But, I have to work...I can't afford to have little Johnny stay home!" For what you pay in school fees and what the government gives most parents for "treatments" and such, why not hire someone to 'babysit' your child during the day? The person could be a college student or a tutor. (Bonus with college students - Most of them are willing to work cheap because they "need/want the experience" of working with an autistic child)


• "But little Johnny won't do his school work if he does virtual school! He's more interested in playing video games!" When I was going to school, I hated it, I dreaded it and I couldn't be bothered with schoolwork. I wanted to draw, play piano, space out and do *anything* that was not school related. I never did my homework and I got bad grades. When I switched schools and found myself in a happier situation, I became quite the little keener - always studying, getting high grades, etc. I graduated on the honour roll.


• "What about special schools for autistic kids?" This is a double edged sword. On one hand, your kid won't be singled out because he's autistic. The other kids are just like him/her and the teachers (should) know how to deal with autistic kids (most times they don't). On the other hand, a lot of those schools dumb down the education worse than the public schools and use ABA type strategies for dealing with autistic kids. There is also the problem with "learned behaviour" - if Little Johnny sees little Suzy banging her head, he may take it up as well. "When in Rome...", right? Don't forget, your child is likely highly intelligent - a school for 'the mentally challenged' is not a good idea. Schools for gifted children would be more appropriate.


• Also, avoid sending your child to a school that specializes in 'behavioural problems'! Sure, your autistic child is displaying behaviours...but those other kids with behavioural problems have really bad ones like Oppositional Personality Disorder (read: "junior psychopath") or folks from very bad backgrounds (abuse, drugs, crime, etc.) who may hurt your child and not care. Your child may also be inappropriately disciplined if a nasty "junior psycho" harms him and he fights back. I've seen it happen. What lesson about society does that teach your child?


• What about private schools? Some, like Montessori or Waldorf are good - but expensive as hell. If you can afford one of these, go for it!
  

3. Learning Social Skills - Extracurricular activities, parental guidance, etc.

Here we go with the social skills bit... I have my own opinions about social skills and how important they are with small children.

One - I don't think any child is really good in this area...so your child is not going to be learning appropriate skills from other kids.

Two - The brainwashing techniques employed by ABA will ensure your child is subliminally programmed to use social skills appropriate to childhood. Anything hardwired into the brain is not very adaptable to change.

ABA is simply behaviour modification which is a form of "hardwiring" desired behaviours as instinct since learning them normally is not happening quickly enough, if at all. The same goes for military training, animal training, etc. Cults have been using behaviour modification for years with great success.

If you don't believe that people who undergo behaviour modification have a hard time with changing or adapting, look at people who come out of the military - they are trained using similar techniques and they find it very hard to adapt to "civilian" society. Also, ask anyone in the "deprogramming" profession (people hired by families to retrieve and "deprogram" family members who are in cults). They'll tell you just how much fun it is to "deprogram" someone who's undergone behaviour modification!

I find it extremely interesting that one "symptom" of autism is being treated using ABA - inability to accept change. Have they no idea that behaviour modification only makes that worse?

Back to point two - childhood skills being hardwired via behavioural modification and the difficulty in adapting. Adulthood is a whole new world and these kids who have had their instincts reprogrammed so they act like children do not know how to transition into adulthood! These people are trying to navigate their way in an adult world after being brainwashed into behaving like normal children. Behaving like a normal child is not going to help an adult in a very new social situation!

In fact, behaving like a normal child due to hardwiring and inability to change that programming could land an autistic adult in a lot of trouble.

Let's look at childhood "social skills" and compare them to adult life:

1. "Let adults handle issues with money, etc." - As an adult, you need to be able to handle your own issues in these areas. You also need to know which other adults would be beneficial in this area since many con artists are out there to grab money from the unsuspecting.

2. "Depend on adults for assistance" - That could leave the door open for very unscrupulous people to take advantage of this new adult who is so trusting. Rape, drugs, etc. Not good.

3. "Always ask permission" - While this is good in most cases, there are times as an adult where you have to take initiative. You need to know the difference.

4. "Always accept the consequences given by superiors" - Good advice for children and can be helpful in adulthood...but life is not fair in the adult world and one must be able to discern the difference between just consequences and unjust ones.

This can also trickle down into advocating for oneself in work situations or even with service providers or salespeople. i.e.: Boss does not get complete story of a situation and fires said autistic employee without the autistic person getting a word in edgewise. Is the autistic adult just supposed to "accept that consequence" or should he "fight that injustice"? ABA does not teach the concept of justice, etc.

5. "Always accept no as an answer" - Again, as children when an adult says no, it's no. However, in the adult world, there are a lot of gray areas. When a woman says no, you do not push the issue of sex. That's a given. No questions there!

However, when you have a defective cell phone and you know it's covered on the warranty and a not too well informed salesperson says "No, I can't get this fixed"...what then? Is the person to just "accept" that? How about with needed health services? "Sorry, I can't provide a service because your IQ is too high" (or whatever) Is the person to just accept that or fight it?

A lot of childhood behaviours that are taught force one to be submissive...which is fine when you are a child! Being submissive and a pushover is *not* good in adulthood!

Think this sounds stupid? Most other kids would just be able transition, right?

Sure. They learned their skills naturally and can easily transition. Autistic people were forced into those skills and have problems with transition to start with.

I learned most of my social skills the same most other kids learn them...the hard way followed by an explanation of why said move of mine was not socially acceptable.

I clearly remember a girl in third grade who chastised me for not washing my hands after using the washroom. I said "What's the problem?" She ranted on about germs and such.

That did it for me...I'm a real stickler for handwashing since that day! (not obsessive, but I wash 'em good after using the can.)

"Social stories" and all that stuff didn't do it for me. One could write all the books in the world on how to be social and it won't do beans for me. I'm a visual and kinetic learner. I need to be in the experience to learn it. Theory doesn't do it for me...I realize that there are too many grey areas in the human social scene (and many other things in life).

I need to experience the social faux pas and have someone explain to me why it turned out the way it did. Even if it just said third grade classmate having a fit about it.

My dad used to sit me down and explain in his very kind, non-emotional and logical way about how the social faux pas of the day that I had committed came to be. What worked out well for me was that he used the same technique on my NT brother too. I was not being singled out, treated differently or "treated".

My dad was being the parent, teaching us both as he should....objectively and equally.

I learned about the following just from my dad:

1. Interrupting politely (although with my motor-mouth NT brother, I had to butt in if I wanted to say anything!)

2. Grammar - If we used poor grammar when speaking with him, he'd make us repeat ourselves until we got it right (sometimes, he had to prompt us if we were confused). I remember his famous "Because is not an answer!" phrase. That stuck with me.

3. Table manners - My dad was a stickler for table manners and both of us could be seen and behave in a fancy restaurant before the age of 4. (He always used to say "What if the Queen came over for dinner?") Dad had the fear of God in us if we acted up. A quiet, non emotional reminder that we would be going to the car to wait if we kept acting up was usually enough to stop. We knew that if we had to go wait in the car...we'd be getting the spaking of the century when we got home. Dad never liked to cause a scene. On another note, Dad also used humour at home. If we had our elbows out, he'd say "Are you a bird flapping your wings? Are you trying to fly away?" Then he'd flap his elblows and we'd laugh. Lesson learned in a positive environment!

4. Following directions - Dad was good at giving directions, unlike my mum who used to just get frustrated when I'd not be able to understand her open ended requests.

5. The ways other kids were - "People change...and not always for the best" my dad would say when we were fretting over why, when our friends were nice to us the day before were being mean now. (NT's are like Calgary weather...wait 5 minutes and they will change)

Dad was a bit of a cynic but we were both entering into adulthood with no misconceptions of the state of the world, the unreliability of people and the "unfairness" of it all. "Always assume the other person is going to do something stupid" was not only a good defence when driving, but good for other aspects of life as well.

6. "Change is inevitable - the only constant in this world is that change happens to everything in all situations" (Other constants being death and illness)

Most of my transferable social skills came from other sources when I was older, had less problems with sensory things and could learn things easier. This is why I do not believe we have to rush social skills on autistic kids with quite the priority or focus it has today.

These things will be learned once the core issues are dealt with *first* (and the child's learning style is determined - we all learn differently, just in case folks didn't know that)!

I learned social skills at work, at my new and very democratic school (their motto was "If a student can't learn the way we teach, we'd better start teaching in the way the student can learn!") and via Toastmasters.

Toastmasters was the best because it was experiential, people were forgiving and always willing to explain things if something went wrong.

The Toastmasters mantra for dealing with little slips and faux pas seems to be "We're all here to learn, right? Don't worry about it!" At least that's what people have always said to each other in the clubs I've been to.

The fact that Toastmasters exists and so many people are in it and benefitting from it tells me one thing: NT adults need a lot of help with interpersonal and communication skills too!

So don't fret if your autistic child isn't picking up all the skills at once. It should not be the primary focus!

Want a good social learning environment for your autistic child?

I recommend martial arts. Sounds wierd, but here are my reasons:

• A good sensei or teacher teaches a person not only how to kick some serious ass, but how to calm the mind, achieve internal and external harmony, and how to handle conflict safely and with common sense. (Serious Ass Kicking is actually a very minor function in martial arts and a good sensei teaches Sun Tzu's philosophy of "to win without fighting is best" - but ensures that a child learns to defend himself in case his opponent is not similarily enlightened)


• A martial arts class is highly controlled and picking on other kids is forbidden. Who has time to pick on someone anyway? They'd likely get their ass kicked in the next spar, so they're less likely to try.


• Eastern philosophy is often taught in these classes and it means learning meditation and other relaxation techniques, as well as how to calm a racing mind - something most of us struggle with!


• For those who complain about their autistic kid's terrible coordination and agility, martial arts will certainly hone those skills in record time!


• Self confidence will be boosted quite well! When one achieves something like being able to win in a spar or get a new belt, it is rewarding and positive.


• Personal strength and self discipline are taught. These things must be taught first in martial arts and these things are also very good for anyone to know.


• Nothing appeals to an autistic someone's sense of obsessing over a subject quite like martial arts! Your child can obsess all he likes over Jackie Chan or Bruce Lee, Eastern Philosophy or whatever and do really well in this setting!


• It's a lot of fun!

I was speaking with an Asian adult on the spectrum at our meetup a few days ago and he said that it was par for the course to be enrolled in Tai Kwon Do when he was growing up. I asked him if he felt taking martial arts training at such a young age helped him with his AS. He said it helped immensely. He's doing quite well for himself working in a bank and has been promoted to managing applications for commercial loans. I'd say it did him good!

If your child is not really into martial arts, dancing, gymnastics or any type of creative pursuit is also good.

Girl Guides and Boy Scouts is also a good place to learn social skills...it's part of their program. They get books on the subject and earn badges for doing these things. The groups are often small and the leaders are usually very good with children and keeping things under control.

Now, your child may not be too keen on the camping and such, but these things can be worked out with the scout leaders.

For teenagers, Toastmasters does have a Youth Leadership Program, which is basically Toastmasters for teens. I am working on getting a Youth Leadership Program set up for autistic teens in my hometown via one of the societies that have social committees and such for teens.

3. Medical Issues - Largely neglected, these are important

I'll harp on about this one until the cows come home. Medical issues are not dealt with.

Now, I know plenty of autistics who'll say there's nothing "wrong" with them...they're just perceiving things (on all levels, sensory included) differently. This is true. However, compared to NT's and their "standard" of perceiving things, it's pathological.

For instance, I have really bad depth perception and need glasses to correct it. If I do not wear glasses, I get nasty headaches, motion sickness and things flying by my head startle me because they look like they're coming right at me and, quite frankly, it sucks.

I also have had problems with my digestive system since day one - constipation, acid reflux, IBS...you name it! Abdominal pains, feeling nauseous all the time and such also really sucks and I would like that treated.

Then there's the heightened senses - particularly my hearing, smell and touch.

Someone hammering something down the street hurt my ears literally. (I lived in a neighbourhood that was still being built, so you can imagine the noise overload I was feeling!) Certain machines had a certain pitch to them which bothered my ears and would scare me.

I was at the medical bookstore with a friend in 1997 and he was playing around with the tuning forks. He struck it and I instantly felt a lot of the buzzing sensation in my ears. It went on for quite a while after everyone else had stopped hearing it. I could still hear it.

I can also hear dog whistles. For years I'd go into a store, try the whistle out and say it didn't work because I could still hear it. (People aren't supposed to be able to hear them...I thought they were all defective!)

My dad made a little high pitched noise box to drive away bugs and mosquitoes because my mum is allergic to mosquitoes. The box was very effective in keeping the bugs away, but I could hear it too...and it drove me nuts. I eventually snagged it and hid it where it could not be found again.

I used to be able to "follow" the sound of my dad's car when he left the house. From my bedroom, I'd hear it back out of the driveway, hear it accelerate up the street and I would see how long I could hear it for. It would turn the same corners to go to work, so I could judge the distance by how often the car turned (the sound is different). I lost track about 20 blocks away.

Smells are enhanced with me, which can be a blessing and a curse. I can smell a gas leak a mile away, some perfumes send me into a state of bliss (while others give me a headache), I can even smell the scent of anaesthetic on a person when they've just had surgery and it's coming out through their pores. I'll bet no one knew that anaesthetic has an odour that can be smelled...it's true!

The curse side is that I can really smell unpleasant scents too. I cannot go to the zoo because the smell of animal poop is just too much for me to handle! I also have a hard time on busses and trains because I can smell *everything*...bad feet, body odour, what folks ate for dinner last night, shampoos, perfumes, body lotions...all of it. Now I love perfumes...but mix that with body odours, digestive odours (people do exert the scent of what they eat)

On the plus side, my parents never had to worry about me smearing feces as a child...the smell would have gagged me! Ugh!

My sense of touch is another thing entirely! External pain is dulled for me to the point that it is just annoying but not agonizing. Sometimes it feels like an annoying itch, other times, it's the throb without the pain (akin to listening to a faucet drip...annoying as heck!) and still other times it's just a warm heat feeling. Once in awhile, something might actually hurt.

I remember Christmas of 2003. My mother asked me to take something out of the oven. I was in the usual overload of Christmas flap, so I pulled the tray out of the hot oven with my bare hands. I didn't notice anything until Mum screamed "What are you doing?? That's hot!"

I looked down and saw that my hands were quite burned. Whoops!

Getting my teeth pulled was less traumatic than it is for most people. I feel the annoying throbbing when the anaesthetic wears off but little pain.

Most clothes, however, will cause me to itch and scratch all the time because my skin is very sensitive. My parents used to get so annoyed because of this, but clothes are itchy!

You have no idea how happy I am with this new trend in clothing labels...laser printed on the clothing...no more itchy tags!

My sensitivities are internal as well. My mind races all the time, making sleeping hard at times. Drugs react very strangely with me. A doctor has even told me that I have too many wierd reactions to medications, so he did not want to see me.

A friend of mine was at the pharmacy and they were talking about side effects to a medication she was taking. She mentioned a friend (me) who has very strange reactions to just about everything...to the point where doctors don't want to see her.

The first question out of the pharamcist's mouth was "Your friend is autistic, isn't she?"

"How did you know?" My friend asked.

"Autistic people have a different neurochemistry, so many autistic people will have very bizarre reactions to medications. I see it all the time."

How interesting: Pharamacists know this. Doctors don't.

Food is a sore point for me. My digestive system is finicky to say the least...ad it likes to change! For months, I'll be ok with a certain type of food and then *wham!* I can't eat it anymore because I start to feel gross. Every time I try it...it does the same. Until about a year later, and then I'm ok with it again!

I really hate eating for this reason. It's a chore. If I could live healthy without ever having to eat food, I'd be happy. However, I know that I can't so I eat after taking a Gravol.

So, yes. There are some differences there.

There are some medical issues there (in the context that they are uncomfortable and I really don't want those "differences") as well as some amazing things that I would never want to lose.

I am only one autistic person in this world. How many others have similar issues? The thing is, each one is different! Someone else may not have digestive problems, but a touch can be agonizingly painful for them.

Each autistic has his or her own sensitivities, strange sensory perceptions (internal and external), amazing gifts and nasty medical issues. The trick is finding out which is which.

The difficulty comes in the fact that an autistic may not tell you of a discomfort since he knows no other way of being. How can something be "wrong" when it's been like that since birth?

A good example comes from a friend of my husband. I'm going to date him here since this discovery came when colour TV's first came into the average household.

Buddy was with the family when they got the TV. As they sat around amazed at the colour TV, Buddy said "What's so great about it? The picture looks the same as it did before."

It was then that people found out that Buddy was completely colourblind. He saw only in black and white! He thought everyone saw in black and whote so he never mentioned it. (This was when he was in school, so it was before he would be old enough to drive and realize he couldn't see the colours of the traffic lights)

Stupid as it sounds, I thought all people felt like crap after eating, itched under their clothes and got headaches every day so I never said anything about it.

There's your puzzle - figuring out what the core issues are for each individual. No one's trying to solve that one though...it's all about the behaviour!

4. Perseverations - Annoying obsessions or the key to success?

For me, my perseverations were communication, reading, psychology, religion and succeeding independently. They worked wonders for me.

Another fellow I know has turned his obsession with Grain Elevators into a historical marvel. Historical societies pay him to speak at their functions; he's working on a book (that people are asking for) and if he plays his cards right, could make a lot of money!

NT's spend a lot of money on self help books, counseling and coaching to learn how to find their passion and capitalize on it. Lots of money!

Yet, they also spend even more money trying to get autistics to stop enjoying their passion and conform!

Yes, obsessions can be a problem. Absolutely. However, some may be a key to success.

5. Who benefits?

I'm going to sound a little snotty here...

From what I have seen and heard from other autistic adults, it's not them who are benefitting from these therapies and treatments, so who is?

The folks making money and getting famous from it. The folks who are happier dealing with an autistic who is conforming.

It is not benefitting autistics or society for them to be so dependent on others, have low self esteem or not pusue their dreams. People love to talk about how much money is spent on caring for autistics.

I think a lot of money could be saved if the right approach was followed: the approach of genuinely benefitting the autistic person.

Not "I want little Johnny to learn social skills so he can make friends"

but "I want little Johnny to grow up knowing he has the tools he needs to deal with his differences, the confidence to handle those who make fun of him, the wisdom not to get screwed over by the unscrupulous, the knowledge to navigate his way through the social and work world, and the serenity of not having to worry about living in a constant state of stress due to unaddressed issues."

6. Communication and Theory of Mind - Two way streets

A lot of time and effort is spent on trying to get autistic people to "understand what others (NT's) think and feel" as well as to "Communicate on our (NT) level".

Interestingly, none of this time or effort is spent by NT's to "understand what autistics may be feeling and thinking" nor on how to communicate on the autistic person's level.

Communication works both ways. We hear that all the time, don't we?

It's time for NT's to start asking the questions they keep asking us..."How would *you* feel if you were in my position and someone was doing this to you?" "How would *you* feel if you were living in a society that cannot accept you as a human being with emotions?"

I hear so many NT's ask questions like "Whoa...autistics can actually think?" "You mean, autistics can feel emotions and such?"

*sigh* Yes, as human beings with brains, nervous systems and physical bodies, we *are* capable of thinking, feeling and understanding!

7. The PTSD factor - What are the signs of PTSD in children and how are they similar to autistic behaviours? What are the medical factors?

I've done the comparison between PTSD symptoms in children and autistic behaviours. They're basically the same. One does not need to be "traumatized" (in the conventional way) to be experiencing the physical and psychological symptoms of prolonged unpleasant stress.

8. The corporate standard of play - That whole "lack of imaginative play" issue (look at what I was doing when I was supposedly not being imaginative enough - you'd be surprised!)

• I created a world, languages and races of people which I would retreat into regularly in fantasy, through my art or my writing.
• I was in a state of bliss when just spacing out or spinning a wheel - most people take many years of training in meditation to do that. I do it naturally.
• And when I was lining up the cars, I was parking them.

Yes, I do like a sense of order. I like symmetry and the way I decorate shows that. I could probably be a fung shui master or something because of the ways I create harmony through colour, placement of things and the need to have free flowing space in the house.

There's a lot there, but I'll be putting a lot of this into handouts for the attendees to take home with them.

1. Let's look at the beginning: My Diagnosis

• Parents noticed that my vocabulary had suddenly been reduced to screaming, and I wasn't playing normally. (My mother said "We had to teach you how to play!")
  
• Back in 1978, attitudes were different. If one wasn't completely non-functional, they couldn't possibly be autistic. It was the first incarnation of STA that diagnosed me. They wouldn't take kids uner 6y.o., but they took me in as an experiment. Now early intervention is the standard.

2. Therapy

• I underwent ABA for a few months. Apparently it worked. My mum thought I was cured. However, when I was feeling bad and those pesky behaviours came out, she'd start moaning about how I was "becoming autistic again". No...I was just too overloaded to keep up the "act".
• None of this stuff dealt with the physical issues I was having. It would be a combination of my taking care of myself and not telling doctors I was autistic to get the help I needed. I'm still struggling with that!
  
• Definition of the word: Therapy - the Treatment of disease. The word "therapy" comes from the Greek "therapeia" meaning "a service, an attendance" which, in turn, is related to the Greek verb "therapeuo" meaning "I wait upon." Therapy was (and is) a service done to the sick. (taken from the online medical distionary http://www.medterms.com/script/main/art.asp?articlekey=10897)


• When the "disease" (abnormality, condition, etc.) is autism, is this simple definition happening? According to one of the Celtic Triads (a compilation of philosophical and societal "triads" from various sources in Irish, Welsh and other 'Celtic' nations: "Three things which constitute a healer: a complete cure, leaving no blemish behind, and a painless examination.") Now we all know autism cannot be cured. Let's get that straight from the start
  
• Right now, treatment seems to focus on the DSM-IV definitions of autism/Asperger's Syndrome:

Diagnostic Criteria for Asperger Syndrome
DSM-IV - Diagnostic and Statistical Manual of Mental Disorders

Qualitative impairment in social interaction, as manifested by at least two of the following:

marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

failure to develop peer relationships appropriate to developmental level

a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)

lack of social or emotional reciprocity

Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested

by at least one of the following:

encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

apparently inflexible adherence to specific, nonfunctional routines or rituals

stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)

persistent preoccupation with parts of objects

The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."

Diagnostic Criteria for 299.00 Autistic Disorder



[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV](I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)

(A) qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction


2. failure to develop peer relationships appropriate to developmental level


3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)


4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )


(B) qualitative impairments in communication as manifested by at least one of the following:


1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)


2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others


3. stereotyped and repetitive use of language or idiosyncratic language


4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level


(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:


1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus


2. apparently inflexible adherence to specific, nonfunctional routines or rituals


3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)


4. persistent preoccupation with parts of objects


(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:


(A) social interaction


(B) language as used in social communication


(C) symbolic or imaginative play



(III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder


Right...so now we have the diagnostic criteria. Have you noticed a pattern?



Each of these criteria are based on outward behaviour, social interaction, speech patterns (or lack thereof) and method of self-entertainment (play).


The fact that autism spectrum disorders are diagnosed with the DSM-IV is the root of the problem...the root of how the medical system is failing autistics. It is not just a series of behaviours or failures in society that define the autistic person. In fact, those are only secondary things!


People are treating a mental disorder...something, that with the "right" therapy...behavioural ones in my case, should just 'fix' the problem.


So...why aren't any of these things 'fixing the problem'?


Because they are not even addressing the problem. They are addressing the reactions to the problem.


Let us look at the definition of the word Behaviour, shall we?


From the Merriam-Webster online disctionary:


Behaviour be·hav·ior Pronunciation: bi-'hA-vy&r


Function: noun


Etymology: alteration of Middle English behavour, from behaven1


a : the manner of conducting oneself


b : anything that an organism does involving action and response to stimulation


c : the response of an individual, group, or species to its environment


2 : the way in which someone behaves; also : an instance of such behavior


3 : the way in which something functions or operates


Pay close attention to b and c in particular:


b : anything that an organism does involving action and response to stimulation

c : the response of an individual, group, or species to its environment


Action and response to stimulation. Response of an individual, group or species to its environment.


If we must take the "behavioural approach", then the therapies are still not addressing the very definition!


In short: Behaviours are an action or a response to stimulus.


We see the response...what's the cause? That is what people should be addressing!


What is the cause of the behaviour? The stimulus.

How to eliminate the behaviour? Eliminate the stimulus or make it not so hard to deal with!

• Why is speech impaired?



• Why the inflexibility?


• Why the repetitive movements?
  
• Why the obsessive nature?
  
• Why the withdrawal?

Why???

Yes...why? That's what people need to look at.

Is eliminating a behaviour using techniques that closely resemble brainwashing really answering the question of "why"?

Not really. It addresses the reactions, not the causes.

Is that helpful? No. Because the problem is still there, even if one is acting normal! The underlying stimulus or cause of the reaction is not going to go away. Suppressing the reaction is not the answer, folks!

Pretending to be normal is also not the answer.

Here's another why....why aren't they finding out what it is the autistic person is reacting to with those behaviours? Why is this not being treated??

Ah...so many thoughts going through my mind! All of these will be edited, cut, chopped and formed into a speech that will be easy to take and retain for listeners.

These are just brainstorms...and I am sleeping a bit better now.