Ren's Ramblings & Writings

Contemplations on things tangible and intangible

Tuesday, October 26, 2010

my thoughts on "Coming out of the autistic parent closet" by another MilSpouse

Find ATWM's letter here: Coming out of the Autistic Parent Closet

Here is my original response:

"My son, who is 15 now, was originally diagnosed with ADHD when he was 4, but that diagnoses left too many things unexplained. Aspergers IS NOT a disease, or a syndrome, as society has labeled it, but rather a GIFT! Bill Gates is said to be Aspergers (look also to Doreen Virtue's definition of ADHD-Attention Dialed into a Higher Dimension) and it is believed that Einstein was Aspergers as well.
Jennifer, you are a doll! Life is not without its challenges, especially in a society with such rigid social norms (many of them questionable), and no doubt that moving to the beat of your own drummer is sometimes less than desireable TO OTHERS, but I've finally learned to try to help my son be WHO HE IS, but to be aware of what society (school, for example) demands of him. We all try to be who we are, yet cater and conform to social norms, like not swearing when we're at our kid's school or in a public business office).

We still have to teach him some things outright,(it wasn't until last year that we realized he was NOT hanging up on us when ending a phone call. In his mind, the call was over, so he hung up, and we had to tell him that, SILLY as it seems, OTHER people really need you to bring the call to an end-say 'goodbye' or 'see ya' because that lets them know you're going to hang up!!)

Rent the movie "Temple." It's BRILLIANTLY done, and Temple Grandin is my hero. She's totally autistic, and a PROFESSOR AT CSU FORT COLLINS, CO!! Aspergers IS NOT a disease or hinderance. It's just another way of being. And, it IS NOT good or bad. It just is."

My thoughts do not end there, however. It has taken time, sorry to say, for me to learn to see my son as a WHOLE person-not a broken person. I have learned that it is society that has the problem. Different. Not less.

Here is another blog on the issue, by Wifeunit, who has also learned that her child is on the autistic spectrum:

Here is my original two-cents on that, which I hope better explains my evolving position on the autistic spectrum:

Wifeunit and others, first and foremost, I'm going to INSIST that we CHANGE THE LABEL from SYNDROME to GIFT.
Tell a different story. The world needs autistics (check out my personal hero, who, while still alive, has a movie in her honor: Temple Grandin; also, Bill Gates, Einstein, Mozart, Isaac Newton, Stanley Kubrick, Daryl Hannah, and a wonderful boy named Luke Jackson, an aspy who wrote a book at 13years telling how he experiences the world-"Freeks, Geeks, and Asperger Syndrome").
See your children as whole persons, able to contribute and live full lives. We all struggle with life-not only stresses and problems, but add to that depression, medical problems, and, for many in our crowd, families are struggling with PTSD and TBI. Autistics and Aspys can be as resilient and thrive as much as any one else. I'm finally seeing my son as the gifted whole person he is, after 15 years. The only reason society labeled it as a 'syndrome' is because we decided we had norms and expectations in society. But autistics and apsys move to the beat of THEIR OWN DRUMMER. Isn't that a good thing? We have had many speed bumps and hurdles over the years to get over, but I have realized I only contributed to the 'label' which has a negative connotation. But when you see how gifted these children can be if we just SUPPORT them rather than tell them that they're broken, they can truly do great things.
My point is, rather than just reading all the books and websites and being an 'advocate' for my son, who lacks confidence now as a teen because he knows he's different, and these labels told him all these years that he's somehow broken, I have to BELIEVE in him and SEE HIM AS A WHOLE, UNBROKEN person.
Don't we all change our behaviors some depending on what setting we are in (like not cursing around toddlers or the boss, or making a scene in the grocery store)? Well, these children must learn the same thing-tell your children that even though it seems silly to have to "say goodbye" before hanging up the phone, for example, just explain that "other people" need them to do that. A huge part of difficulties are in the social realm, and WE AS A SOCIETY have determined what is acceptable/expected and what is unacceptable, and we conform, whether we want to or not. Our children can learn to "help others" by conforming to some of these things -then validate them by acknowledging that "sure, it seems strange, but it's what the store manager or restaurant manager needs from us." The problem is ours as a society-not theirs, but we've made it their problem and told them they're to blame because they're different.

Different isn't bad. Different is not less. See them as whole, not broken, and whole, unbroken people have to contend with life, just as well as those of us suffering depression or PTSD (both diagnoses that indicate some level of 'broken').
I would say that I've been grateful for our military life, since structure is good for people on the autistic spectrum, and our household is fairy structured. I will say that my 15yo does struggle now, since mom is not the one he needs so much, and dad is gone a lot (not deployed, but still not at home, and facing yet another deployment). And the entire household deals with Sapper's PTSD. You bet, we all experience it when dad can't handle a slamming door, a barking dog, or the startle of an engine backfire.
Never the less, I do think our family not only has, as a military family, had access to all the resources necessary for success (good school district, psychiatrists, psychologists, and others such as PT/OT) but we've never paid one penny for services. If we don't care for one doctor, we can try another. We paid a copay for one of his medicines that was not available at the Army pharmacy, but that's it.
Sometimes I look at our house, and I feel guilty and wish I could do things better for my kids, but then I look at other families, even those without "labels" and realize, we are good. We are thriving. We are resilient-yes, even my Asperger's son.
I want a group to brainstorm how we can help our kids on the spectrum to be confident, to learn to navigate society confidently, yet still be confident in WHO they are, and to still know they are WHOLE and valuable people. We have to prepare high-functioning kids for the real world, but, since kids are the future, who are we to try to dictate what their norms will be, especially since more and more people are being "labeled" as being on the spectrum. Seems to be more the norm than not, which makes the rest of us the minority! Maybe WE'RE broken if we're NOT on the spectrum.

I want to tell my son,
"yes, our society requires you to make grades and to behave certain ways (like sitting still). BUT, we all know that letter/number grades are only PART of the picture-only one measure of what a student is learning. In school, you must sit at your desk, but if your brain works better on math with your but against a wall and your legs going up the wall, then at home, that's what you do. Because home is sanctuary.

And we will help you succeed, even if your letter grades (which is one way society measures you) are not what society thinks you should have. Aspergers is not a disability, and not a crutch. "
Finding the label can be a relief, as it gives us a 'label' for the issues that have troubled us or our kids. It also opens the door to support, treatment, and community. The problem is not having a label. The problem is that we've given the label a negative connotation, and it's time to CHANGE how the world views the autistic spectrum, and those who move to the beat of their own drummer.
We don't have to do anything at all about Asperger’s or the AS. They are unique, often successful individuals who are simply … themselves!

Excerpts from:

"Diane Kennedy, an author and advocate for Asperger Syndrome, writes, "They are our visionaries, scientists, diplomats, inventors, chefs, artists, writers and musicians. They are the original thinkers and a driving force in our culture.""

"Likewise, Dr. Temple Grandin, an adult with autism who became a successful engineer, academic and speaker, believes that her disorder is an asset. She once famously called NASA a sheltered workshop for people with autism and Asperger Syndrome. She believes that people with autistic spectrum disorders are the great innovators, and "if the world was left to you socialites, nothing would get done and we would still be in caves talking to each other.""

"People with very high IQs often question the status quo, resist direction, have long attention spans, undergo periods of intense work and effort, and like to organize things even as children. Other people often perceive them as "different." All this is the same with those who have Asperger Syndrome."

"Lovecky notes how Aspies often have advanced vocabularies, recognize patterns others do not, and pursue ideas despite evidence to the contrary because they are not easily swayed by others' opinions. Their ability to focus on details and their inability to see the big picture means they can often come up with solutions to problems others overlook. Aspies are often willing to spend long hours in laboratories and in front of computer screens because they do not mind being alone. All this enables them to make tremendous contributions at work and school. Author Patricia Bashe points out that people often admire those who can work independently. She writes, "Our society celebrates the individual who does what he thinks is right and goes his own way.""

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