It’s a different thing being around other autistics.
Well, doubtless I’ve been around other autistics before. But when we did not know we were, there was all that stress from passing (“pretending to be normal”), so generally weren’t aware of what our sensory and other needs actually were, much less how to comfortably, genuinely, be ourselves.
Now it’s different.
(1) A little morning talk over my cuppa tea. Then he says, “Well, that’s enough social interaction for a while.”
He returns to his computer work, and I chuckle as I go out the door.
IT’S LOVELY when constant conversation or chit-chat aren’t expected.
(2) Yesterday I took a day trip to London to meet a friend from the States.
We met at the train station, where (being faceblind) I texted him my location and held a page with his name so he could find me.
After he bought his sausage roll, I suggested eating on the less-crowded, quieter mezzanine level. Together again after a long absence, we sat talking about how much less stressful it was not being in the States: him not worrying about being shot at, and myself not being awoken by gunfire. Alas, we were unsuccessful at not talking about Trump and disability and healthcare and racial and social care and environmental and- and- and- US politics Bllaarrgg. (The actual convo didn’t have many paragraphs, or rather, not spoken aloud. But I flapped a little in frustration.)
Time to move on; we brushed off the inevitable puff-pastry crumbs. I geeked over riding trains and how different cities smelled, and he reminisced about subway announcements. We started to get on the first subway car but it was too claustro’, so we caught the next. En route to the British Museum, Waterstones bookstore sucked us in; he found books he was looking for. I checked out the wee toys, feeling more 5 than 55, more child than grandmother, as I checked out the shinies and tiny things and science toys.
We ambled to the Museum, pausing as needed for him to catch his breath or for my slow knees to ascend stairs. No need to apologise; no need to hurry.
Then finally at the Museum! Get maps and —
Have a cuppa tea and figure out what to see. This was not a Must See Everything tour; we both understood having to mete out our tolerances. Made a list. He suggested started and the fifth floor and working our way down — Excellent!
Oh boy. One lift out of service, and it took a bit of searching to find the other. And … the fifth floor Japan exhibit closed. Moving along … Third floor was fascinating. We took photos. SO crowded, so many languages going on, so many Auditory Processing Disorder blips for us to chat much.
By the time we got to the room with the Egyptian mummmies, it was a crush of noisy school children in addition to all the tourists. One couldn’t walk in a straight line, and hardly much take photos.
It was overstimulating. Too much noise and too much crowds and he needed a breather. Too many smell-shapes and flavoured colours and moving sounds and I needed to sit. We glanced at each other in instant agreement; he pointed towards an adjoining room and we wended our ways out. Sat and rested by the rune stones.
At the end I lost my pal in the vast space of the museum entrance and crowded plaza, so once again, I texted him my location and held a page with his name so he could find me. It being mid-afternoon, we did the sensible thing and regained our stamina with chips and ale in the pub across from the museum. Apparently 15:30 is a good time in a pub; there weren’t many there and we could hear each other speak. Recharging time: I rocked and he doodled.
That in turn meant that we were hungry for our evening meal at Café in the Crypt at St Martin-in-the-Fields during early evening. The food was hot and fresh, and we choose a table that felt secure near a pillar, instead of exposed from people surrounding our backs.
Back on the street after dinner, he announced, “I’m running low on spoons.” We stopped to rest at Trafalgar Square. Then my train was due in an hour, so parted we ways at the Northern Line.
IT’S LOVELY not having to justify eating at a particular table, or wanting to photograph the visual texture of fractured safety glass, or why subway announcements are so endearing. Or that one is getting overwhelmed and needs to rest and stim, or is running out of spoons.
Nor did it take us twenty minutes to say Good-bye; that was enough social interaction for a while.
I was going to call this my “Hope For 2015”, but that is so passive and useless. Anybody can – and lots of people do – post warm, fuzzy notes with Hopes for the New Year, and others click and share. Lovely.
But this is NOT all warm & fuzzy. It’s literally dead serious (with many murdered throughout the year), and quite often blunt, because I am blunt at times. It’s also a call to a change of perspective for some of you.
Deal. Think about it. I’m not a lone voice. Click and share.
MY CALL TO ACTION IS FOR YOU TO READ THIS THROUGH, THINK, AND SPEAK UP. ALL YEAR LONG.
And the next year and the next.
This isn’t about some stranger, or Those Other People, or “That Kind”.
Children with disabilities or other differences are not diseased or broken. The same is true for adults. Yes, those “poor, little disabled children” grow up into disabled adults. Gee, so where’s the concern now? It sure isn’t at work; in the U.S. general unemployment is at 5.3%, but for disabled adults it’s twice that at 10.8%.
Nor are autistic or ADHD children some kind of modern mystery; millions of such adults have been around for decades, just unrecognized for lack of diagnostics. Most of us are profoundly relieved to find out Why. We still have to deal with the details, but that’s easier when you know that not all your difficulties are from some kind of moral failing, or from a lack of trying (and trying, and trying).
WHAT, YOU NEVER HAD KIDS LIKE “THAT KIND” IN YOUR CLASSES? YOU KNOW WHY?
Some were kept at home, because until passage of the IDEA in 1975, US law did not require public schools to teach everyone.
Some were warehoused in institutions, badly treated, undiagnosed or misdiagnosed, and oft uneducated.
But many of us were there; how we struggled through school and life, without accommodations or understanding, and often the target of bullying by peers and even school officials.
Untold numbers of women and men just knew themselves inexplicably “a bit odd”, and did best they could; some succeeding, others not so well.
At worst are those who not only lacked resources, but were shunned by society’s classism, ableism, racism and sexism, and (if still alive) are found among the imprisoned, derelicts, addicts, abused and enslaved populations.
YOUR CHILDREN AND EVEN COLLEGE STUDENTS WILL LEARN DIFFERENTLY, SO YOU MUST ADJUST
We are neither inherently stupid nor incapable of learning. Learning differently means teaching differently. Find what works. Everyone has limits, but a consistent lack of success means you should use another method, as well as more time. Sometimes the learning is highly irregular in pace. Tie learning to interests to motivate your children and students.
Also, be aware that sometimes the “simple basics” may be entirely bypassed by some students who leap to master higher concepts, albeit often forever struggling with those seemingly “simple basics”. People are humans, not robots. Learning is not always linear.
COMMUNICATION IS NOT JUST SPEAKING
Never assume that just because someone is nonverbal they cannot communicate. If you’re not getting their messages, then *you* are doing something wrong. Nor should you assume that because someone is nonverbal that they cannot understand what people say (though the processing may sometimes be delayed). Nor assume that because someone has been nonverbal for years that they’ll never speak. And damn, will you get an earful.
INCONSISTENCY IN DAY-TO-DAY ABILITIES IS FRUSTRATING FOR ALL, AND NOT A CHOICE
Importantly, just because someone is able to speak or do a task one day, that does not guarantee consistent results. It’s the nature of disabilities — regardless whether considered mental or physical – all involve the brain. Brains are funny things, and many of us have a few buggy Beta-version programs in our wetware. It’s frustrating as hell for all involved.
But don’t assume the “could-then-can’t-now” is intentional. “Oh, he can hear me when he wants.” “Well, you could solve those equations just fine yesterday.” I can guarantee that after a lifetime of such, ridiculing people and punishing them for things they cannot help only increases performance stress.
While that stress might increase focus from sheer terror, it often squelches overall functioning. (Do you want me to listen to you, or try to recall yesterday’s process, or slowly figure it out on my own? I can only do one — if my stomach will stay down.)
TRAMPLE THE TROPES
Ignore the media tropes and centuries of religious hype: disabled people are neither inherently amoral, soulless and evil, nor are they infinitely happy, friendly and angelic. People are people. A few will be nasty bits, some will be profoundly good sorts, and the rest are just ordinary folks who get mad, sad and glad, who screw things up sometimes, and who will also serve others selflessly despite bearing more abuse than anyone should.
We are definitely not incomprehensible, incomplete, little autism-puzzle-pieces, unloving, unlovable, or uncaring.
We are whole people with all the same cares, needs and wants as all humans. Beware — disability happens to anyone at any time. We aren’t a Them, and YOU can be among the world’s 15% in just one day. We are all Us.
STOP “TEACHING TOLERANCE”
Because tolerance means putting up with something one doesn’t really like, or that doesn’t really belong. We want full-fledged ACCEPTANCE.
Nor should we only be acceptable if we can somehow “overcome” our differences enough to pass for Normal Real People. Trying to “pass” all the time is exhausting, and invariably breaks down, oft resulting in the [supposed] Normal Real People assuming that one is lazy, stupid, crazy, all the above, or worse.
Training children for hours a day how to artificially perform “acting normal” does not serve to help them learn how to function best in the world. Yes, of course teach good manners, social and work skills. But suppressing every twitch of one’s natural being adds to stress, making everything else yet more difficult. This is especially when performing like a “normal person” means not doing the harmless things that reduce stresses.
STOP THE BLAME
I must call out the terrifying, unaddressed assumption which underlies so much daily trauma: “The reason the disabled [children] are targeted by bullies is because they are perceived as being weird”. Despite the pervasiveness of this social theme in society, most people are functionally unaware of it, all the while instilling in their Normal People children the same message. Normal People children need to act normal, and not act like That Kind. After all, that’s how the Normal People know the others are That Kind, who’s Us and who’s Them.
But it’s the disabled and different who are taught, over-and-over-and-over that not only is it their fault for behaving or looking weird, BUT ALSO if they weren’t so weird, well then they wouldn’t be bullied. “Quit being so weird! Just say No! Just say Stop.”
Just say BULLSHIT. Because this is blaming the victim. The problem is not that everyone isn’t the same, the problem is that there are bullies.
Even worse, blaming the targets actually empowers the bullies, because the social story says it’s the victim is the one who is acting wrong, so it’s not really the bully who is to blame.
Let’s just top off all that existing anxiety and depression with the trauma of trying to seek justice, but being told again that, “Well it’s your fault, you know. Attracting attention by being weird, and bugging people. You need to quit making trouble now. You already take up too much of our time with all of your “special” needs. Quit whining and go deal with it. — But no fighting, because we’ll know it was you who started it.”
By the way, it’s not “just a kids at school” thing that everyone will “grown out of”. It continues on through college, and happens at work, too.
YOU CAN’T WALK IN THE LITTLE BOY’S SHOES;
THEY’RE FLOATING DOWN-RIVER
It is NEVER acceptable to murder disabled children. Nor should these repeated, horrifying events be considered “understandable” or “excusable”, with the murderers being pardoned just because their son or daughter had a disability.
Increasingly more prevalent in social media, the crime becomes insidiously deemed more and more acceptable. Murderers re-cast themselves as martyrs, acquiring champions to their cause. Throughout repeated blog posts and news stories, they bemoan how taking care of disabled children is just too unbearable, they had to take care of them every day of the week, there was never any relief or help. (Even though there was.) Cue the groupies’ hand-wringing and protests upon the villains’ behalf: “Oh but won’t you walk in their shoes, how they’ve given up their lives, this wasn’t at all what they wanted.”
For in true sociopathic fashion, the poor, long-suffering parents revel in the attention, announcing to the world – sometimes ahead of time — what they have done, and all the while describing themselves as the victims. The dead children (young or adult) are unwanted, and deemed unwantable, less than human just because they couldn’t speak, or needed medical treatments, or used a power chair, or didn’t play with their toys the “right way”, or wore adult diapers … No one would want to live like that; the thing’s better off dead. And what of the groupies? Well, where do you think people get such terrible ideas that it’s okay to kill one’s own children?
ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.
Quit using those heart-tugging videos, walk-a-thons, telethons, and other grand-society functions to win your supposed Cosmic Brownie Points for giving us your pity. Please stop dumping upon us the largesse of your unwanted rags (so Victorian, so passé), or creating useless functions requiring us to serve as targets of unwanted helpful-helper-helpiness for your ego-boo.
Get disabled people out of “sheltered workshops”. Yes, people need work they are suited to. But the segregation and token sweatshop “wages” are an embarrassment and humiliation to all.
YES, CHILDREN GROW UP.
YEP, STILL DISABLED, BUT NOW ADULTS
Do not assume your children will remain permanently childish and incapable — they mature on their own timelines. Allow adults to be adults. Support their needs and interests, but neither dress them like children, nor expect them to live their lives in naïve pre-puberty stasis, without adult desires for socializing with adult peers, life-long learning, mastering skills for some kind of job (even if that job is “just socially productive work” rather than traditional work), and yes, having a love life, however that may be expressed.
YES, PEOPLE ALSO NEED ACCOMMODATIONS;
THAT DOESN’T MEAN “CURE”
Most disabled or different people are not looking for cures to magically change them into someone else, some kind of fantasy Normal Real person that their families wanted instead. Our differences may result from physical events, by random mutation, and / or genetics. Your genetics. We are family. I’m Me, and I like being Me. If you somehow changed all the differences in my brain, I wouldn’t be Me anymore, with all my quirks and abilities.
Of course it will be great to find a means for preventing migraines, epilepsy, fatal medical conditions, et cetera. But it’s also a sad fact that some people have been so convinced of their undesirability as disabled human beings that they can only see “cure” as a means to being an acceptable Normal Real Person. (Worst of all, some people commit suicide because they’ve been taught to hate themselves, as useless and unwanted.)
But what’s really alarming is all the fund-raising, talk, research, and work going on today to eliminate entire kinds of peoples. I’m talking about the thousands of selfish individuals and sociopaths who believe that anyone with neurological or morphological differences should not exist at all, because That Kind takes up too much time, money, and resources.
That’s not “looking for a cure” – that’s eugenics and euthanasia, the same ideas that led to the Nazi Aktion T4 program and other horrors. (In my youth, the state hospital was still in the regular habit of sterilizing people. Had I been institutionalized, I might well not have had my lovely children and grandchildren.)
Yes, we want assistance, we want things that help us achieve what we want in life. Getting the things one needs to learn effectively, to move about, attend to their own needs, to work, to play, to be a part of the community, to have lovers or families. These things should not be seen as extraordinary, special, absurd, or a waste of money, just because they aren’t the same kinds of things used by other people. 15% of the people in the world have disabilities. That is a lot of humanity, and many are uneducated, abused, neglected, avoided, or shut away, depriving the world of incredible amounts of untapped abilities and talents.
CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.
MAKE IT SO.
“If, of thy mortal goods, thou art bereft,
And from thy slender store two loaves
alone to thee are left,
Sell one & from the dole,
Buy Hyacinths to feed the soul”
– Muslihuddin Sadi,
13th Century Persian Poet
I have not bought a Valentine’s present for my husband. I am divorcing him.
Disabilities can change how the processes of falling in love, joining, living together, loving together, and separating happen.
For most disabled people, their disabilities affect how others perceive them as even being interested or capable to find love or sex. (WTF?!)
For many disabled people, their disabilities can even change whether or not others afford them even the opportunities to find love or sex. (Again, WTF?!)
Although my husband and I both have disabilities that have changed how we are employed, communicate with each other and others, parent our children, or even sleep together (literally and figuratively), the divorce had nothing to do with our disabilities. It’s just about the usual sorts of moral failings that can lead to divorce (even after the sensible year of counselling to assay changes).
Because in the end, love and sex do not happen because people are able or disabled. They happen because all people are people. And when love and sex quit, they happen because all people are people. Just people. Like everyone else.
This post is (slightly belated) part of Dave Hingsburger’s “Sexy Bloggers” blog carnival on disabilities and love/sexuality, over at his blog, Chewing the Fat.
For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.
“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show). “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.
Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics. To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms. To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.
We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.
We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.
Crip chicks like we don’t diss on our disabilities, we diss from our disabilities. It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.
I need more social life, but there’s so much of ordinary socialising that I find enervating.
I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it. But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy). My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.
I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.
I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.
I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?” The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.
I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort. It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms. True friendship enables positive interactions, and supports needs and affirms and enriches our lives.
Here’s a toast to real friendships!
The Kid recently took the ACT test, which like the SAT, is frequently used by colleges to determine scholastic abilities, and in his case helped place him for which college writing class he needed. He had to ask his sister what the test was like, and her impressions about its difficulty level. I could not personally provide any opinions, because I had never taken the ACT or SAT.
I never took them because no one thought I would go to college.
They made massive assumptions about my abilities and my future. So here’s what happened, and something to think about. I welcome you to please post comments, and more links to other positive blogs and sites.
My grades in secondary school grew worse over the years, and I had to re-take a semester in one class (English of all things, which in later years proved to be ironic when I became a freelance writer, with hundreds of items in print).
By this time in my life, my parents had divorced. My dad lived in another state, and was even more of a non-player in my life. Alas, my mother had spent years futilely trying to make me more “normal”, from requiring me to learn right-handed penmanship, enrolling me in a “charm school” at the local Sears & Roebucks to improve my feminine graces, and so on. But as the years wore on, my faults (problems) became more and more apparent. She no longer described me as “very bright”, but was quick to list all my failures and describe them in damning detail, until I was ready to vomit or pass out from the stress (though I never did, even though either would have been a relief).
By 9th grade it was apparent to all that I was not gifted scholastically, and the general consensus was that I was lazy, stupid at math, not trying hard enough, and acting up just to make her life difficult. When she was drunk, my failures and interests and personality traits would be compared to her ex-husband’s, “you’re just like your father, the bastard”. Even as much of a socially-clueless 14 year old that I was, I knew that these kinds of comments were untrue and inappropriate, and the problem was with her attitudes and her drinking. But they still hurt, terribly.
I would not be diagnosed with ADHD, Auditory Processing Disorder, and Prosopagnosia until I was in my 40’s. Such diagnosis hardly existed in those days; certainly my difficulties were not considered to be due to anything but my own personal failings.
No way, my family and school officials decided, could I be college material. I could not keep track of my assignments, I still struggled to learn and remember my multiplication facts into 8th grade, and I flunked or barely passed classes.
Given my social difficulties and subsequent lack of dating, and even my utter lack of domestic abilities (mom warned me off taking a sewing class because doing so would “ruin my GPA” – grade point average), I was obviously not highly marriageable. This was the 1970s, and most people still thought along those lines — an astonishing number of girls went to college to “get their MRS”.
The goal then was to get me some kind of minimal trade training, so I would, as she fiercely reminded me many times, not be a burden on the family. It was made plain to me that once I graduated high school, and then later turned 18, I was to be out on my own. I should not expect financial assistance from her.
So I was enrolled in typing, which was a miserable experience beyond the whole ordinary ordeal of learning to type on manual typewriters. The room was a cacophony of noise. The instructor was adamant about constant attention to task, proper posture, and graded with the intent on us producing perfection — as soon as a student produced a typographical error, then the score was made. (Additionally, the students’ pages were held up to the light against her perfect copies to check centering and spacing). There were many days when I would produce an entire page that was otherwise perfect but for a typo in the second line, and my grade would be an F because I had such a low word-count. Given my problems with developing manual speed, tracking text (near-point copying), attention, and transposing letters and numbers, I struggled to get a C grade.
But the clerical work that was deemed best for me also required taking bookkeeping. Not surprisingly, this was also a very difficult class for me. My aptitudes and interests were not really taken into consideration, because after all, even if writing and science and art were what I liked best, I had not done well in those classes, now had I? Besides, clerical work was what my mother knew, so like many parents she expected me to follow occupational suit.
Unlike many such students, my story has a relatively happy ending. I did manage to graduate high school, to everyone’s relief. A year later, I even enrolled in an evening class at the local community college. College classes were not easy, partly from my intrinsic difficulties, partly from not having the necessary study skills, and partly from not having a solid academic background.
But the glory of the American system is that such colleges provide opportunities for adults of all ages to acquire the these things, and to gain higher education. I worked hard, and slowly figuring out how I learned, which was not always in the ways that others thought I should study. Sometimes I had to drop a class and re-try it later on, to finish it successfully. Later on in my 40’s I was to also get some of my issues diagnosed.
I now have a Master’s of Science. I teach college students. No one would have expected this based upon my previous performance. (Employers who place near-complete trust in Behavioral-Based Interviewing, please note!) And this point, amongst all the others about the perils of attribution errors, and learning disabilities, and dysfunctional families, this point is crucial:
A child’s future abilities cannot always be predicted,
when based upon their current abilities.
Many parents of children who have developmental disorders worry that their children will never be able to attend school, or finish school, or go on to college, or hold a job, or live on their own, or be loved by a partner, or have a family, or talk, or be potty-trained, or any number of milestones. Just because the child cannot do the same things that their age peers can do, or are expected to do.
This is one of the biggest points of contention or discussion between the “autism community” (parents of autistic children) and the “autistic community” (children, teens and adults who are autistic, and many of whom are parents as well). Even beyond the farcical assumptions that either community is monolithic with regards to attitudes and knowledge and politics et cetera, there are inherent issues that need to be mutually addressed.
One of the best resources for the autism communities are the autistic communities. If parents go around just talking to other parents, especially those other parents who are consumed by the “Terrible Tragedy and Selfless Suffering Families” world-views, they may fall prey to this easy assumption: If my child can’t do it now, he’ll never be able to do it, and our lives will be ruined.
Sure, not everyone takes it to that extreme. Sure, there are a few children who do not achieve many of those life-goals. But those lack of achievements does NOT automatically mean that their lives are ruined, or their families’ lives are ruined. They do NOT automatically mean that people cannot live relatively happy, healthy, and productive lives.
Please do NOT assume that not being able to use speech as a reliable means of communication is the same as not being able to think, or not being able to communicate, or not having anything to communicate.
Please do not assume that because a child does not learn in a traditional manner that they are learning “the wrong way”, or that they cannot learn at all, or that they must be taught “remedial learning lessons”.
Please do know that even when children have problems, and are slower to acquire skills, they are not doomed.
Please do not give up on them.
“Don’t talk to me like I’m an idiot.”
~First words (at age 35) of an autistic man [quote source]
I welcome you to please post comments, and more links to other positive blogs and sites. Kindly see the newly-updated “NOTES TO COMMENTERS” box in the top of the left sidebar for important information. Continue reading The Crystal Ball Crack'd
Elizabeth McClung of the Screw Bronze! blog.
This beebalm flower struck me as being kinda goth-like in form, so I spiffed it up for you, because more is more. Thinking of ye, gal, take care!
(Apologies for unsettling anyone’s recent meal.)
My news aggregator came up with this doozy of a quote the other day. It was an editorial reply to an article about Kathleen Seidel, and I’m not going to quote the entire letter. (Follow the link to read it yourself — if you want to reply to the author, do so on that newspaper’s reply page.)
I am one of those parents who has watched my autistic son go from being a vegetable to becoming human, thanks to chelation.
Okay folks, let’s get this straight.
These are vegetables:
These are children:
It is quite insulting at the personal level, and damaging at the social level to describe people with autism or another other condition as being “vegetables”. Doubtless the author believes that their child has improved due to the effects of an unproven “treatment” for an unsubstantiated diagnoses (e.g. autism as mercury poisoning from vaccines). But even if the diagnosis and the treatment actually had any factual basis, that would still not make such comments appropriate.
How would YOU feel if your parents described you as a “vegetable”?
Or as “having rotting brains”?
Or as a “train wreck”?
Or that your condition “relentlessly sucks life’s marrow out of the family members”?
Or as “an empty shell”?
Or as “soulless”?
Or that “Autism is worse than cancer in many ways, because the person with autism has a normal lifespan”?
Or as having “mad child disease”
Or that you “would have been better off aborted” because regardless of your aptitudes or potential skills, your existance is automatically assumed to be a “burden on society”.
I’m not making these terms up; you can google them. People with disabilities face enough stereotyping, discrimination, abuse, bullying, and are murdered more often than those without. (I’m not using hyperbole; click here or here.) Describing disabilities in such sensationalistic terms and derogatory ways does nothing to help people become better educated, better integrated into society and employed, or become better accepted in their schools, workplaces, social organisations and families.
More than that, one really has to wonder, What kind of parent describes their child in such insulting ways? And does so to the entire world? Such treatment to children over their lives does not bode well for their psychosocial development, that’s for sure.
When you hear people describing their family members, their students, peers, coworkers, or anyone else they know in such terms, take a moment to ask them,
- Why they use such descriptions?
- Do they really believe it, or are they just repeating something they’ve heard?
- Would they want to be described that way?
- How else can they describe their frustration or disappointmnet with events in life without insulting people like this?
But most of all, we need to be mindful when we speak up about such hate talk, and not use similarly disparaging terms. We don’t want to become that which we despise.
(A request to people commenting: please use appropriate language — follow the guidelines described in this post.)
Sometimes after a child gets a diagnosis (or diagnoses) the parents begin to realise many of the same issues from their own childhoods, and on through adulthood. In our family it took the opposite route. It took years to really see the aspie qualities of my kid, partly from unfamiliarity, and partly because in a geeky family like ours … most of those qualities are “normal”. Not until the teen years did the social issues, the APD issues, and ADHD-related educational issues really become unavoidable. The tics went away after several years, as happens sometimes. But I think there was less “denial” as there was unawareness and a sense of internal normalcy: “this is just the way we are”.
A very nice article by Benedict Carey illustrates this: Your Child’s Disorder May Be Yours, Too
Mr. Schwarz, a software developer in Framingham, Mass., found in his son’s diagnosis a new language to understand his own life. His sensitivities when growing up to loud noises and bright light, his own diffidence through school, his parents’ and grandparents’ special intellectual skills — all echoed through his and Jeremy’s behavior, like some ancient rhythm.
His son’s diagnosis, Mr. Schwarz said, “provided a frame in which a whole bunch of seemingly unrelated aspects of my own life growing up fit together for the first time.”
It can alter the present, too, if parent and child have enough common ground. Mr. Schwarz, the software developer in Framingham, said he became in some ways like a translator for his son, who’s now 16.
“I think there are a lot of parents of kids with these diagnoses who have at least a little bit of the traits their kids have,” Mr. Schwarz said. “But because of the stigma this society places on anything associated with disability, they’re inhibited from embracing that part of themselves and fully leveraging it to help their kids.”
Our understanding of diagnoses mean changes over time, and we leave or entirely skip that stage of grieving over not having a promised “normal” child, or possibly even viewing the issues as horrible things that must be cured at all costs. Instead, we find that our children are different rather than damaged, and that we ourselves are oft times different as well. We move from grief to acceptance, and realise that acceptance is not the same thing as resignation.
In fact, we do not have children with broken wings, but we are in many ways flocks of different kinds of birds, not unlike the diversity of finches that Darwin found in the Galápagos, all adapted for slightly different niches. After all, we don’t all need to be penguins attired in identical tuxedos.