Jewellya

enjoys picking at the festering splinters of humanity

Jewellya

Jewellya
Location
Houston, Texas, USA
Birthday
January 15
Bio
Still Contemplating the Mysteries of the Universe, this dangerously analytical critical-thinker is beginning to enjoy the view from her life's predictably unpredictable path.

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Salon.com
Editor’s Pick
JUNE 25, 2012 8:43AM

Autism's Inconvenient Truth

Rate: 23 Flag

A couple weeks ago I received the report from the school district’s diagnostic team regarding my three year old’s “condition”. Nothing in the report surprised me except for the fact that the description of my daughter’s mannerisms, which have impaired her ability to integrate into her day care classes, was also a description of myself at three years old. No, really, that didn't surprise me either.

Given my own upbringing and looking forward to the upbringing of my own, I am now convinced more than ever that I know what actually is this thing we call autism. You can call it a hypothesis or theory if you prefer. I am too busy living it to delve into the scientific process just to find out what I already know.

Previously, in my attempts to research, I would come across highly abrasive descriptions of “autistic behaviors,” which would stop my research cold. These descriptions were not intended to be offensive, but were clinical, scientific conclusions based on observing human beings as research subjects. The example that’s sticks with me is that apparently the flapping of hands “seems to be a way of relieving stress.” These researchers/writers have apparently never been so ecstatic or overjoyed that they physically cannot contain their excitement. I suppose hand flapping would also occur with an adrenaline rush of intense fear. Ever found yourself out of control of your senses shortly after a car wreck? There might have been hand-flapping, but I wouldn’t diagnose you for it. It wasn’t the description’s clueless and generalized nature that irritated me so much as the distinct lack of desire to understand a characteristic, much less the person, the writer had no problem dissecting. Yes, I took it personal.

If you were to meet me today you would not recognize me, assertive and self-assured as I am, as having once been my daughter’s clone. But as I recently told the school psychologist who apparently specializes in autism: The primary difference between my daughter and myself is Who Our Mothers Are. “My mother was highly authoritarian,” I told her, “And when you are afraid of your own mother twenty-four hours a day, the vacuum cleaner does not scare you.” I chose my words carefully and delivered them with a measured force designed to penetrate the ignorance of the expert.  “Josie has the luxury of experiencing fear because fear is not a constant in her life. She does not have to operate in a state of survival, so she has the opportunity to choose which stimuli she would rather not experience. As Josie’s mother, I walk a fine line between coddling her whims, and seeking to understand her world as she sees it. If I can get through to her that I am trying to understand her on her terms, she becomes remarkably cooperative.”

She seemed taken aback by this revelation. As if a psychologist and specialist in autism never understood that a child’s emotional state cannot exist without the influence of his or her environment. I don’t blame her. It had been my perception and, I believe, the perception of most, that autism is a diagnosis “on the rise,” as if our modernized, air-conditioned, vaccinated society has given way to a new ailment slowly creeping in to undermine our population—how Spielbergian.

I, however, believe the inverse to be true. And I will continue to believe and expound upon my understanding as I navigate with my daughter the rigid mechanism of the public school system. I hold true that “emotionally sensitive” children have always existed. They are able to fully experience their emotions in a richer complexity than their physical bodies can adequately express. But until about fifty years ago, the reality of children—all children—was that they were a consequence—a byproduct—of adult behavior. They were an extra mouth to feed and the onus was on the parents not to smother the inconvenient little thing. Yet as we all know--really, you do--infanticide is humanity’s dirtiest little secret.

If those children of consequence were allowed to eat some of their parent’s shares before they could begin show their own worth, on their parents’ terms, and in a sense earn their keep, these children—babies—would experience within that elemental stage before they understood their own identity, whether or not they could relax into their parents’ embrace, or always remain at a distance, even while asleep in their arms. If you did not want your child and viewed him or her as a burden, if parenthood caught you by surprise and emotionally unprepared for the experience, that baby asleep on your chest is an extra mouth, an inconvenient little thing regardless of what you tell others, regardless what you tell yourself.

It is a testimony to the resilience and adaptability of children that “autism” was an unknown condition until the 20th century. It could be that if a sensitive child had an awareness that they are a burden onto their parents, they will not seek to further burden their parents with the inconvenience of their emotions. If these children wanted for nothing more than the approval of these people gracious enough to give them life then food and a place to sleep, there was great incentive to model the behaviors these people wished to see. The child will imitate the parents as the highest form of flattery.

Meanwhile, corporal punishment and parenting through fear had been standard practice since antiquity: “Spare the rod and spoil the child.” “Children are to be seen and not heard.” These practices are the imposition of adult preferences onto the children in their care. If they be obligated to these inconvenient little things, a silent house of “disciplined” children was a means to temper their losses. With the exception of the rare enlightened soul, no one considered to view these children as each an individual with value which existed independent from their ability to appease their parents.

The sensitive child in this environment, an environment of fear and punishment which grew less violent only as the 20th century progressed, would begin to learn there was a peculiar comfort in fearing one’s parent. If the father tells the child to work with him in the pasture which contains a bull, if that child has less fear of the bull than he does of his father, he will do as he is told without complaint. The more often he experiences the pasture and the bull does not harm him, the child grows less afraid of the bull. However, speculation may infer that the child will also not venture into the pasture without his father. As a young man, the fear of his father’s disapproval (or desire for praise) may implore him to finally face the bull alone.

Today, in our modern society of birth control and in-vitro fertilization, we now have a means to only have children when we are emotionally ready for them. We are willing to spend a small fortune to produce children because we want them and are simply not willing to leave that to chance or to nature. We can also read books and formulate our parenting philosophies long before the first diaper. Then our little bundles arrive and we welcome and embrace and cherish them for the joy they bring to our lives. Our precious wee-ones in their formative months can relax into our chests and know that they are no burden because we asked them to be here. They do not grow to fear their parents, they do not grow to think of themselves as an inconvenience that must be contained and controlled. Their emotions are unbounded. The fear they experience is real because fear is not a twenty-four hour constant in their lives.

From speaking to other parents of “different” kids like most of those of my family, I am comfortable saying that some children have an awareness that no matter what a parent does, they (the children) are in full control of their existence. These children know that no one on this Earth can force them to speak if they don’t wish to speak. But to not speak is an act of anxiety as well as an act of control. I recognize the phenomena of a child who once did speak suddenly becoming silent as his or her reality comes into focus between the second and third birthdays. I also know of toddlers who would once walk straight off the end of a bed without a hint of fear because they did not know the concept of falling. Then they learn the nature of a fall and what can cause it and the toddler—older, wiser now, more fearful—makes the choice herself that walking off the end of the bed is not in her best interest. 

 

 

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Whoa. Lead story...
This is beyond terrific, beyond controversial, beyond science,
thank god...

so many points right on the mark:

i daresay this is the most..uh..practical one...

"these researchers/writers have apparently
never been so ecstatic or overjoyed
that they physically cannot contain their excitement. "

i do, and will forever. be overjoyed. next corner
brings me to utter crushing despair.
i have somehow, after 45 years,
learned control over this,
but noone in the
industry taught
me this.

they helped with solicitude and perhaps a hint of empathy.
for we are all in a spectrum.and
brain? it is always growing
making new connections.

there is no such thing as a permanent condition...
unless..."damn fool stupid", ha.
I passed a link to a friend of mine who is a mother of an autistic child.

Nicely done.
I am so glad i stuck a chord with you, James. I hope I can continue to think "beyond". It is my gift. In learning to embrace that gift, I have grown not to fear it. Thank you
Thank you Apollo, I appreciate that.
Congratulations, Jewellya! Another EP, a thought-provoking perspective on how the world might look to a young child. I wish I could remember that far back!
The expanding spectrum of "autism" is finally revealing what I've long surmised: nearly two-thirds of what were once regarded as "socially normal" behaviors are maladjusted emotional reactions to hard wired "fight or flight" biochemistry. The similar spectrum of "bi-polar" and PTSD diagnoses loads more weight to the question that's been rattling around in my mind since I was 12 or 13, "Am I crazy or is there something wrong with the people around me?"
Thanks Dan.
It's a trait within my family that we remember EVERYTHING. My recent awakening has allowed me to stop viewing it as an inconvienience.
jmac: exactly. How many adults do we hear about who seek counseling (or are perpetually miserable) because they can't say "no" for fear someone won't like them? The fear of "no" begins with the explosive parent (lemme tell ya, i know.) My daughter does not fear telling me No. and i never want her to.
I believe that is my starting point.
Such a stellar piece! Thank you.
R♥
and Thank You, FusunA. I appreciate. :)
Wow. Fascinating and enlightening. I'll be thinking about this.
This is an excellent post .
Autism like other"illnesses" are a product of society.
True autism exists as proven in a story titled "Son,rise".I have read this story decades ago and I would like to know what has become of the boy.
Generally speaking,we should be careful of labeling the young child's behaviour,or any other age group.
Presumptious attitude can be very harmful for anyone but especially at an early age.
For quite a while ,the discussion about Ritalin kicked a stone loose.
This is disturbing and annoying because the child will be categorized and deprived of his/her true identity.
Rated...

...and looking forward to continuation.
This is a great piece, Jewellya! I have been "in the trenches" taking care of an autistic son for 34 years. It hasn't been easy but I'm still around to tell the story. I just wish there were more services available to adult "autists." My life now consists of finding appropriate things to fill his days.
Things will get better for you. When my son was diagnosed, one in 10,000 kids were labeled as "autistic." Now that it is being diagnosed and the spectrum has become so broad there will be a lot more out there. Maybe some day my son will benefit from services. Hang in there. If you need advice or encouragement, I might be able to help.
The Aspergers mom with the autistic son
I've got a nine year old daughter that was diagnosed right about the age of 2 also.

I planned out my life exactly like I wanted. We got married, bought a house, and then got pregnant. I was 30 years old when she turned one month old. I didn't know what was going on and I knew something wasn't right, but until my own mother did some research online and said the word "autism" for the first time the signs were obvious and glaring at me. It was something that was undeniable and I knew she had it. Explaining this to others has always been difficult. My in-laws aren't as willing to put in the effort to develop a relationship with her or get to know her.

I wish you a ton of luck and hang in there. Support groups are out there for parents and make sure you sign yourself up for medical secondary insurance because your child now qualifies for it. Also ask about respite and other in home therapies. They should have gotten you in touch with a social services place, but if they didn't then find them yourself.
I'll share a bit of my story just to share, not because you seem to need any advice. I love the way you think about things.

A reference librarian was helping me as I researched all the different disorders that could be causing my two-year-old son's behavior, as he went through the tests and before we got a diagnosis. (Actually, this was in the early 1990s, and we didn't get the Asperger's diagnosis until he was in sixth grade, but that's a different story.) She gave me a few references and said, "You know, you can learn all you want about cerebral palsy or anything else, but that won't tell you any thing about Ted. He'll be the same son the day after you get the diagnosis that he is now. You'll love him as much the day after the the diagnosis as the day before. You're his mom. You love him. Let the clinicians fret about the diagnosis." Ever after, I kept that straight in my mind.

The other thing that got me through all these years (he's in college now) was an insight that I genuinely cannot remember who I got it from or whether I realized it myself. Kids--all kids--are like flowers. A mother's job is not to raise a rose to be a lily, but to make sure the growing conditions are favorable for the kid to blossom into whatever he or she was meant to be. Neurotypical kids are like daisies or dandelions--they grow healthy and strong with normal soil, sun, and nutrients. Our kids, however, are like rare hothouse orchids. It takes more work and attention to figure out the soil conditions, water, and unique nutrients they need, but they can grow into something rare and beautiful.
Autism is overdiagnosed. Sometimes, there is a neurological tendency which runs in families to handle anxiety and overstimulation with self-stimulation, to withdraw from people and gravitate toward objects and to learn social skills more slowly. So what? We choose one set of inherited and learned behaviors and label them as eccentric or dysfunctional and totally ignore lots of other behavioral combos. It's all so artificial which personalities or traits we choose to label and which not. That's a problem in my field.
Right on! I believe that if I were growing up today I would be called autistic.
My Mom was a remarkable woman who apparently saw through my inability to filter extranea as others do but instead just naturally take it ALL in.
The professional wonks with so much clout in our society can't stand to see a round peg, they just have to square it off into a box-fitting form.
I'm very unconvinced that psychiatry is anything more at this juncture than medicine was a thousand years ago.
Every gay man I know must be autistic.

But seriously; "It could be that if a sensitive child had an awareness that they are a burden onto their parents, they will not seek to further burden their parents with the inconvenience of their emotions.
as a great writer said.

Amazing introspection. That needs to go into a textbook because it explains it all.

I know severla Autistic/Aspergers people and they could not begin to write like you...but then...I didn't ask them.

You are an ideal parent to any child, you are the perfect parent to your own.
What has helped me in understanding autism behaviors is reading the many insightful books written by Temple Grandin, a high-functioning autistic woman who is both an autism advocate and animal rights advocate. Among many topics, she discusses her sensitivity to sound, her talents as a visual thinker and her childhood behaviors that were frequently misinterpreted and mislabeled by the adults around her. I've used much of what I've learned from her books in helping my brother, Bobby, who is profoundly autistic.
Thank you for your post -- best wishes on your journey . . .
At some point i feel i should respond to all these wonderful comments and stories, posted here and sent to my inbox.
I'm a little out of sorts since my viewership jumped from maybe 100 in the first 24 hrs--if i was lucky--to over 2000 in the first 24.
I've surprised myself by not getting worked up about the attention.

Perhaps the same clarity that allowed me to write this piece is the clarity that's telling me the Truth of the matter exists beyond me. if it is the Truth, then I did not invent it, therefore the credit is not mine.

However, I am infinitely flattered by the compliments regarding my writing skills. Thank you.

I am hesitant to respond to parents of adult autistic children, as I sense a "welcome to the club" vibe from your stories and "advice" which i feel doesn't quite match with my continued thoughts on the subject.

I wonder: If this Truth, such that it is, has been overlooked--even by autistic themselves--how much that alters their own opinion of their own abilities. Does the son not drive a car because he is incapable of the operation, or because he is fearful of other drivers' abilities whom he does not know or trust, combined with speed, combined with the requirement of immediate decision making and follow though based on his own judgements which he also does not trust.
If the son desires to one day drive a car --IF he DESIRES--his first step is to trust himself.
..and for what it's worth: many times as I pass thru a standing green light, I audibly tell myself "the light is green...the light is green..." as if I don't quite trust my eyes to distinguish green from red--then there are times I have slammed on the breaks because i believe the light to be green when it is red, because my cognitive mind is actually somewhere else at the moment.
Karen McKim: Thank you for liking the way I think.
I like the way you think too, and without evidence to the contrary, will gladly assert that you thought up the orchid analogy yourself.
I've had a few thoughts of my own along those same lines.
:)
A very meaningful post. I myself, having had a near-diagnosis of autism, have often pondered this problem our society seems to have regarding the honoring of every person's unique nuances and personality. To quote one of my favorite psychoanalytic authors R.D. Laing "One must ask the question, does the illness reside in the individual or in the society in which the individual must reside?" Thanks for sharing your story, Jewellya. I am sure many such as myself will find it very helpful. Best regards to you:-))
Important - and much appreciated - insights. Thank you!