You've probably seen the very good books and the articles: Ten Things Every Child With Autism Wishes You Knew (http://www.kidspeace.org/healingMagazine/NEWHealing/healing_fw05_7.htm) and Ten Things Your Student with Autism Wishes You Knew http://www.kidspeace.org/healingMagazine/NEWHealing/healing_ss06_7.htm
I think these are both fabulous because they are making some good points. I do highly recommend reading these. They are excellent!
Yes, I always hear of how parents wish their autistic kids could talk to them, and society wishes their autistic kids could talk to them, and so on and so forth.
"If only they could tell us what's wrong and how we can help!" They implore as if there has never been an autistic person out there who could actually tell what they experience.
What boggles me is that there are a *lot* of autistic adults talking out there...yet people are still wondering why none of them are coming forward.
Everywhere you turn, there is a book, a google group, a Yahoo group, a blog, a website, a you-tube video, and a forum...all dedicated to autism and mostly populated by very "vocal" autistic adults. They're all talking about what they would like to see, what is going on with them, what society is missing and where they themselves are losing out on a lot of good things in life.
Autistic “Advocates” are out there in droves, claiming to speak for autistic people. “Yes, autistics need 40 hours of ABA a week! How can you autistic adults say it’s damaging?? You’re trying to take the only medically necessary treatment away from my son/daughter!”
Yeah, ok. I’m sure your son/daughter likes working an intense 40 hour work week? Most adults have a hard enough time with that. Yup…that’s why your child is screaming and tantruming even more?
Where are the real Autism advocates? The ones who really are autistic and are advocating? Oh, they’re out there!
No one’s listening. That’s the problem. Autistic people are frequently turned away from committees and boards. Autistic people are constantly cut down by parents and such who say they want to help their kids, but don’t want to listen to those who may have an idea of what is going on since they’ve been there.
How fascinating. They want us to talk. They spend years, money and hours of therapy to get us to talk all through our childhoods. Autistics finally start talking en masse via the wonders of the internet and the written word and what happens? Folks seem to go deaf. Unless they’re hearing it from their own kids’ lips, it cannot be valid, right?
OK, I’ll admit, many of us, Including myself, are not as nicey-nice about what we have to say. We’ve gone through a life of being told in not so many ways that we are defective and a burden. (For those who think we don’t sense things – oh yes we do)
NT's seem to suddenly lose that "theory of mind" thing that separates them from us and our words cannot possibly be considered.
Autistic people have feelings? They might actually know why they behave the way they do? Naaawwww!
“What the heck do autistics know that the scientists, psychologists, psychiatrists and doctors do not?” My answer to that is one of those irritating little phrases I hear used by NT's a lot: "if you have to ask..."
Well, let's look at myself as an example. I'm not going to generalize here because other autistics really hate it when people do that. Look at Temple Grandin as a prime example of that. The world famous autistic PhD said that we all think in pictures because she does. What a shock when many autistic people said quite clearly that they do not! Whoops.
Anyway. What would I know that these highly paid, book-learned "professionals" do not?
Well, for starters, I know what it is like for me to be autistic. They don't (unless they are autistic too). I know why I behave the way I do. I know what I experience every day. I know my limits and I know my weaknesses. I also know my strengths. I listen to what they say and just shake my head saying ‘Man…you haven’t got the slightest clue, do you?” It’s sad, really.
Let us examine some of those things that seem to be characteristic in the beliefs of Professionals and see where I rate. These are the supposed “characteristics” of autism that many write about:
Thanks to Reader’s Digest for the characteristics (“really simple English” is my own interpretation) (http://www.readersdigest.ca/mag/2001/09/autism.html)
1. Lack of Theory of Mind -
In English: "Lack of Empathy".
In *really* simple English: "Can't understand that other people have feelings too".
Where I measure up: Wouldn’t it be nice if I couldn’t sense the emotions of others! Unfortunately, I feel too much! The emotions emanating from NT’s is often too much for me to bear and I find myself having to “turn off the sense-o-meter” to make it through the day. NT’s may not know it, but their emotions just radiate like heat and light from a candle flame. Some days, it’s like standing next to a blast furnace! I know I’m not the only one out there who feels it because I’ve asked others. Your supposedly unresponsive child likely knows exactly how you feel, but does not want to go there and face it.
2. Lack of Imaginative Play –
In English: “Doesn’t play according to normal development standards appropriate to one’s age.”
In *really* simple English: “Does not conform to the corporate standard of play set out by NT’s.”
Where I measure up: My mother told me that I didn’t play properly when I was a child. WTF? I was not aware that there was a corporate standard for play that I was missing out on. Yeah, I lined up cars…I was parking them in the parking lot! (Sheesh!) Why? “‘Cuz that’s what people do with their cars when they’re not driving them…duuhhh.”
And what was I doing with my Barbie dolls when I wasn’t playing “let’s have Ken and Barbie go out on a date” like my friends did? I was putting on a murder mystery or a fantasy story. I had some of the She Ra dolls and they were always out on some sort of quest, while the Barbie house was the castle.
Looking at what my NT friends played and the imagination that went into my playing, I’d say I was light years ahead of them!
What’s with the fascination with spinning things like wheels on a toy car? Have you ever watched a wheel turn and felt that blissful Alpha state of relaxation just wash over you? No? That sucks and I feel sorry for you. You’re missing out on something really good!
One thing I get a real kick out of is when people say that autistics have no imagination and then say their child retreats into fantasy worlds. What is fantasy if not imagination, folks?
In high school, I created a whole world, a language, a system of writing, a class system and a complete society of people with a mythology and a pantheon of deities to go with it!
I’ve talked to other autistics who also have very complex and intricate fantasy worlds.
If that is not imagination, please tell me what is!
3. Impaired Development of Reciprocal Social Interaction (Woot! That’s a big one!) –
In English: “Does not develop normal interactive social relationships with others, lives in a World of one’s own and any social interactions are mechanical at best. Does not maintain eye contact.”
In *really* simple English: “Does not confirm to NT social standards.”
Where I measure up: The end of this article has an item about why autistics may be behaving the way they do, so I’ll keep this short. I’ve spent the most part of my life running on instinct and autopilot. Pretending to be normal is not fun and it’s a lot of hard work!
When a baby perceives the world as a threat, the baby will be running on instinct – the emergency response system. Likewise, if the person is not threatened, he or she is open to intuitive learning. Ever wonder why autistic people learn so fast when they’re interested in something? Because they’re not threatened, they feel good and this makes them feel that way.
I can learn social skills in the right environment. For me, that “right environment” is Toastmasters. This is a worldwide organization that teaches communication and interpersonal skills. This tells me that it’s not just autistics who need to learn these skills, given the millions of people all over the world involved in Toastmasters!
However, the environment is supportive and inoffensive, the people are patient and friendly (for the most part). The people mentor each other and help each other grow. Opportunities to succeed are given to all.
Where else can you learn best but in a comfortable, friendly, non-threatening environment by your own choice? If only autism therapy was like this…we’d see a lot more successful and happy people who socialize just fine, thanks!
4. Markedly Restricted Repertoire of Activities and Interests (Woot! Some good $20.00 words in this one!) –
In English: “inability to relate normally to objects and events in the environment” Obsessions, inflexibility to rigid lifestyle, bizarre attachments to objects.”
In *really* simple English: “Is totally obsessed with having things his/her way and person gets really attached to certain subjects or things”
Where I measure up:
See above. When a person in general is feeling good, they learn easier. That goes for anyone. If you look at normal kids in school, how well do they learn if they have the flu or something? How well does an adult work or learn if he or she is ill, uncomfortable, stressed out or in pain?
Autistic people, when they find something that feels good and relaxes them, find they learn very quickly about the subject. They also are very reluctant to let go of it, if it is a routine. You may notice that these things will come and go in importance. Some will remain…and those are likely going to be a key to that person’s success.
I know one autistic fellow who is obsessed with grain elevators. He’s now getting the attention of the government, museums and historical societies. They are willing to pay him for his knowledge and depth of work in tracking all of the elevators in Alberta (ones that are here and ones that are gone). He is writing a book. Who thought that his little annoying “obsession” might be what makes him his fortune? Are you hindering your child’s success because you think his obsession is weird? I hope not!
Look at Temple Grandin. She’s got a thing for farm animals (Not *that* type of thing…get your mind out of the gutter! ;^D). She got a PhD. She created a squeezing machine that helps calm animals before slaughter and made a ton of money on it. She’s living on a very nice ranch.
Psychology is my *thing* and I am starting university right now. I started reading university level psychology textbooks when I was 13 and working my first job at the used bookstore. The students would sell their books and I’d buy them. I just absorbed that information and it helps me understand other people quite a lot.
How fortunate that communication and psychology are my two big obsessions!
Can you say that you’ve used your interests to skyrocket your success? Experts in self help books say you should. Perhaps we have the edge on NT’s in that regard?
5. Abnormality in Eating, Drinking and Sleeping –
In English: “Some autistic individuals may restrict their diet to a few different foods. Some may refuse to eat items with a particular colour. Individuals with autism frequently have disturbed sleep patterns.”
In *really* simple English: “Won’t eat certain things and won’t go to bed when told to. Won’t sleep at night.”
Where I measure up: I have a number of sensitivities. One of the most annoying to me and those who know me is my digestive system. Finicky thing that it is, it seems to change its mind about what is ok to eat quite frequently. You find this annoying? Try being me and not being able to eat something you love one day! I feel nauseous all the time. It is very frustrating!
As for sleeping, I have always been, and always will be, a night person. There’s no one bothering me at night, lights are low, and things are quiet and peaceful.
Ahhhh. What a great time to be alive! I have so much energy at night because I am feeling good with a capital G!
The problem is, that school happens in the day, most decent paying jobs are during the day…and the status quo seems to be day time people. So what does that mean for a night owl? Not a lot of fun.
When I worked the 3:00pm – 11:00pm shift between 2000 and 2002, I found myself feeling better than I ever have. I slept 8 hours every day, I had a ton of energy and I was loving life! Unfortunately, security jobs do not pay well, so I now have a day job where I am tired all the time, I’m lucky if I get 4 hours of sleep a night and I’m cranky as all heck.
Some folks like to talk about autistics and their inability to accept change. One day, ask me about how many NT’s I’ve taught computer skills to. Let me tell you about certain NT’s and refusal to change! Wow
I for one love change. It usually shakes me out of a rut and gives me something new to deal with.
6. Odd Responses to Sensory Input –
In English: “Responses to sensory stimulation is inconsistent.”
In *really* simple English: “Does not react the same way all the time.”
Where I measure up:
Like MS, the sensory problems with autism are transient. A person with MS might not be able to move their legs for a few weeks, and then they can one day…before losing the ability again. Their symptoms are also inconsistent.
Why? Because of plaque on the myelin sheath (in English: cruddy stuff gets on the stuff surrounding the nerve bundles and causes some problems with the wiring)
Has anyone actually checked to see if this might be the case with autism? Perhaps it’s not plaque on the myelin sheath but something similar that might affect the nervous system’s response?
Of course not. Autism is “behavioural” right? It’s just our way of being difficult and annoying to everyone else.
7. Abnormalities of Mood –
In English: “Erratic emotional responses”
In *really* simple English: “Emotional responses do not confirm to the corporate standard of emotional responses set by NT’s.”
Where I measure up:
Take anyone who’s not feeling well, who is constantly being told that they are useless, who has a chronic medical problem that no one can fix or is just having a bad day.
How is their mood going to be? If you said “crappy”, “Negative”, “snotty” or “frustrated” (or any other synonym for these things), give yourself 10 points.
Look at it from the autistic point off view: You’ve been raised to know that you are definitely defective. You have medical problems but no one has investigated them and no one can help you alleviate the problems. Most days, you’re not feeling 100% good and people have been telling you throughout your life that your needs and such are not important – just act normal, darnit!
How are you going to be? If you said “crappy”, “Negative”, “snotty” or “frustrated” (or any other synonym for these things), give yourself another 10 points.
“By jove, Watson…I think we’ve got it!”
8. Self Injurious Behaviour –
In English: “Person may injure him or herself (i.e.: had banging, Cutting, etc.) or have inappropriate reactions to things.”
In *really* simple English: “Responses and reactions are weird and freak us out.”
Where I measure up:
What is a great way to alleviate uncontrolled pain? Inflicting controlled pain upon oneself. It’s not very nice, but it works wonders to help focus when anxiety is running out of control…and it also diverts pain from other places.
Now, I’ll agree that this is not good. My question to the pros is: Are you teaching autistic people how to effectively cope with their “challenges” and make themselves feel good without having to inflict pain upon him/her self?
If not…why not? Would you rather teach a person to feel good about themselves and help themselves feel better? Or would you prefer they keep hurting themselves? When one has to hurt himself, that means it’s really bad. You’re not doing your job if you are not answering yes to that question and should be ashamed. How can you sleep at night knowing a child has to do this to himself?.
9. Abnormal Posture and Motor Behaviour –
In English: “Person exhibits stereotypical repetitive motions such as hand flapping, etc..”
In *really* simple English: “Movements are weird and freak us out.”
Where I measure up:
Flap your hands. Go ahead. Do it right now. It’s ok…I won’t tell anyone if you won’t. Flap ‘em real good! Go to the bathroom or something if people are looking and you’re feeling self-conscious.
How does that feel? For me, it feels awesome, like there’s this euphoria surging through my body. Don’t you feel it? No? Again…I feel sorry for you. You have no idea what you’re missing! Heightened sensitivity can make good feelings even better!
I remember a few years back, a NT co-worker and I had a discussion on this very topic and he was asking why autistic people rock back and forth. I sat him down in my chair and I said “Rock back and forth…smack your back on the back of the chair just so.” He looked at me weird but did it….he didn’t want to stop!
“Holy crap!” He said. “This feels really good!”
Now, look at yourself or other people when they’ve got abdominal cramps or are not feeling well. What do they do? Rock. Some people in severe grief do it to. You’ve seen the widow at a funeral rocking back and forth bawling her eyes out or just staring ahead.
Almost all babies love that old rocking sensation!
Anyone who’s ever had a colicky baby will tell you how rocking and the vibration that comes from a moving car or an operating dryer can really quieten that baby down!
Rocking is another one of those little primitive movements that makes people feel better…they experience it as babies and it carries through their whole lives.
Autistic people are no different and they love it too. It makes them feel better. It makes me feel better. There’s something almost calming or euphoric about rocking. It is a natural human way of calming down in a time of trouble or discomfort.
Look at some of the other repetitive motions that NT’s do: tapping feet, fiddling with pencils, chewing on things, playing with hair… Some of them are pretty darened annoying! Repetitive stereotypical movements are not only in the realm of the autistic!
10. Abnormal Cognitive Development –
In English: “The cognitive development of the autistic population is generally uneven and a large proportion are mentally handicapped. However, it is not uncommon for an autistic person to have an exceptional ability in one or more areas.”
In *really* simple English: “Most autistics are retarded, but can be good at one or two things.”
Where I measure up:
My parents were told I was retarded when I was 2 years old. They should just lock me up! I’d never talk, use the washroom on my own, go to school, live alone, attend college, drive, sew, etc.
I’ve been tested with a 134 IQ. I’m certainly not retarded when I compare myself to some NT’s that I know! (I work in the IT industry and can tell you many stories about NT’s with university degrees and just how *stupid* they can be…Oy!) I was reading at 3.
Out of all of those things, the only thing I’m not that good at is sewing. I really suck at things like knitting, crochet, etc. I can fix a computer, I can even do some maintenance on a car, I can draw, write, sing, paint, compose music, do public speaking, cook a gourmet meal, lead, counsel and dance. Can you? I’m good at fine arts, humanities and some mechanical things but I really suck at the domestic goddess stuff.
So I’m not a girly girl. I suck at the so-called domestic arts. I can deal with that. I’m sure there are lots of things NT’s suck at too. (Again, I’ve got stories galore!)
I attended a lecture given by a psychologist back in 2003 and learned something very interesting about human development.
When babies are born, their brains start forming those neural pathways. They touch, eat, smell, hear and form their mental “opinion” of the world from there. This programs the Amygdala, that wonderful little piece of the brain that provides autonomic responses and basically acts as the “autopilot” for the most part. Depending on how the baby perceives his or her world, the amygdala will “program” the brain’s responses accordingly.
The Amygdala is a handy little throwback from mankind’s early days when mankind ran mostly on instinct. This little piece of flesh in our brains helps a child develop everything he/she will need to survive in his/her environment. If the environment is harsh, the Amygdala will “program” the brain and body to respond to that environment. Chances are, that child will respond in more primitive and autonomic ways in order to cope with a painful surrounding.
If the environment is favourable, the Amygdala leaves more openness to learning and the child will have more ability to intuitively learn.
If you look at abused children who are not autistic, you’d likely see some similar things going on:
* Withdrawing into one’s own little world
* Repetitive behaviour
* “Regressing” back to a younger age
* Lack of control over one’s bodily functions
* Constant “reliving” of the bad experiences
* Self injury
* Refusal to stray from routine
* Refusal to eat/drink or finicky eating/drinking
* Obsession over certain objects or subjects
If you were to look at torture victims and prisoners of war, you’d likely see these signs again.
I remember reading the Handmaid’s Tale by Margaret Atwood in High School. The main character, Offred, gets pretty obsessed about a certain saying in a cabinet “Don’t let the bastards get you down”.
Many victims of torture, extreme abuse and disasters will claim that they spent many a time focusing one thing and that focusing hard on one things helped them through the ordeal. Whether it was a prayer, an object, a saying, etc….those people all fixated on that one thing and it helped.
Read the “Diary of Anne Frank” sometime and see what she fixates on.
Look at footage of victims of abuse, torture, rape, etc. You’ll likely notice them rocking back and forth, looking out with a blank expression, not showing emotion and fixating.
Does this look familiar to you? It should…most of these behaviours are characteristics of autism too. Why is that?
If one looks at the Amygdala’s function in very early childhood, it’s actually pretty obvious.
The Amygdala is responsible for all of our autonomic and emergency reactions. When the environment is perceived as dangerous, painful, uncomfortable or threatening, all of these little primitive, instinctive and very normal responses to trauma come out as behaviours. The person acts out as above to survive.
So, what does normal human automated trauma reactions have to do with autism?
Well, think about it. Say you’re a baby with a messed up nervous system that does not perceive stimulus properly at any given time. Some sensations are not felt, others are felt way too much.
How is your world going to seem? Not very nice, I imagine.
What is your Amygdala going to be doing? Preparing you for a very nasty and traumatic life where your need for survival skills is going to be outweighing your need for social skills.
Guess what you’d be doing most of your life? You’ll be in a state of contant mental and physical emergency.
And what will you be exhibiting? Responses to trauma via the autonomic survival system thanks to the Amygdala.
What will your priority be? Being a social butterfly or trying to get away from the trauma? Trying to get away from the trauma if you’re a normal person!!
What do we call that? Post Traumatic Stress Disorder
And what are you likely to be diagnosed with as a small child? Autism.
How will you be treated, little child, in your painful and intense world? Likely with 40 hours a week of intensive therapy that just makes you feel worse! They’ll use some techniques employed by prisons, armies and torture chambers around the world: Behaviour Modification to make you act normal, despite your pain.
Will that help the things that are stressing you out? No. Because they don’t get it!
Will you act normal? You bet your heinie! You don’t want to be tormented anymore, so you’re going to just do exactly what they want to get them off your back.
How are you going to grow up? What will your attitude be? Negative. You hate the world. You don’t think you’re worth anything and your world is more painful than it was before. Like many, you may feel a strong urge to kill yourself. You may break down as an adult because pretending to be normal just doesn’t cut it anymore.
As an NT, do you think these responses are programmed out of you? “Oh sure. I wouldn’t act like that!”
Want to see your autonomic responses in action as an NT? Check out this site and see what other NT’s have said when they’ve had to experience life as an autistic person for just a few minutes! http://www.autismconsultingservice.com/new_page_3.htm
It’s not pretty, folks.
Are conventional Autism therapies treating the real problem or just the symptoms?
In 2003, I did a speech about the subject of autism from my inside view at a conference. The first half of the talk was about why autistic people may be doing the things they do and how most therapies often see these reactions to a root problem as the "symptoms" which they are treating, which is why most therapies are totally missing the mark.
OK, I have to rant here, because I’m inspired and I’ve finally been able to word what I have been trying to say!
Isn’t that what I’ve been doing all day? Well…yeah; but it’s my blog and you don’t have to read it if you don’t want to. I’m ok with you exercising your choices and not reading.
I’m just doing this help myself articulate what I want to say so I can provide a less “emotional” response when it does come time to work on my thesis.
Anyway…where was I? Oh yes: Conventional Autism therapies and do they help?
They do not address the root problem at all, in my opinion. They only focus on getting children to ignore the problem/not react without any form of appropriate coping mechanism to help that child empower himself and feel better. They are then forced to act socially correct while disregarding the reason for their “behaviours”.
You see, people look at autism as a “social” disorder. A simple social development disorder would not involve the physical symptoms many of us face. A simple social development disorder would not cause many of us to have messed up sensory perception. It would not cause many of us to have digestive problems, vision problems, etc. That’s ok, it can be fixed with intensive behavioural modification.
Ah…if only that were true!
If one really must look at Autism as a “disease”, then let’s look at it this way: If one has a cold (a nice common disease that everyone can relate to), takes a cold medicine like Nyquil or Contact C, and then feels good enough to go to work, has the virus really gone away?
No, of course not. You go to work and feel good, but you’re still spreading the existing virus to all of your coworkers. With a cold, the root problem is a virus (which will eventually go away). The drugs treat the runny nose, fever, achiness, coughing and slight pain that are just symptoms of the cold. Those are just reactions to what the virus is doing to the cells.
It is similar with autism. With autism, the root problem is often a difference in sensory perception which causes a great deal of discomfort in various areas of the body (for each person it’s different). Unfortunately, this does not go away, however, no matter how “normal” a child seems after therapy. These root problems are stuck with us for life. No amount of conventional autistic therapy is going to make it go away.
They haven’t invented that therapy mentioned in the “The Speed of Dark” By Elizabeth Moon (Good book, by the way…I highly recommend it!).
All one is doing is alleviating oneself of having to look at that child’s reactions to the root problem – one is not actually doing much good for the child who is now going to have to grow up with this discomfort and the message that no one really understands nor cares how he really feels. He just has to “act Normal and no one gets hurt”.
What kind of life is that for anyone? Where is the quality of life there? Where are the ethics?
Would we force a cancer patient to just “deal with the pain” because their behaviours are annoying when they try and alleviate the pain for themselves…or does one give them a pain killer to help them be comfortable? Having worked in Palliative Care, I can tell you that absolutely everything is done to help that person with his or her pain!
If one really wants to look at autism as a disease, then the medical profession is failing autistic people miserably!
They are absolutely missing the mark, not even coming close to addressing the real problems, not understanding the problems, not researching everything properly and certainly not treating them properly!
They are not treating anything; just forcing a child with extreme discomfort to just “suck it up” and act normal. How wonderful. I doubt one would ever take such a lacksadaisey or cruel approach to someone with a physical ailment.
Heck, even schizophrenics and folks with mental illnesses are better treated when they are in care! At least the medical profession actually looks at and treats the root problem!
It is time, people, to start looking at the real problem with autism and treating it correctly. One most certainly would not get away with treating anyone with any other ailment the way autism has been treated over the years.
Just my thoughts today. Sorry if I sound cranky. I say things as I see them.
