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!
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:
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.
