Autism

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Total news: 100
Last news: June 17, 2007 16:51:54

Published in 1963, The Feminine Mystique, by Betty Friedan, described a sense of unease among American women. Even if they lived in comfortable middle-class suburban neighborhoods and had caring husbands who worked diligently to provide for their needs, many women still felt unhappy, although they often could not articulate why. They had a general sense that there ought to be more to a womans life than keeping the house clean and the family well-fed, but they were uncomfortable discussing these thoughts with their husbands, who might feel unappreciated and resentful, and who probably wouldnt understand anyway. Betty Friedan called this predicament "the problem with no name" because there was so much silence surrounding womens lack of meaningful life choices.In the autistic community today, we are confronted by our own problem with no name. Caring parents, in accordance with experts recommendations, are spending large amounts of time and money to provide a variety of services for their children. Despite all their efforts, however, their childrens options in life are severely restricted by a society that does not respect or value neurological diversity. When autistic adults speak out about their desire for greater acceptance and opportunities, some parents feel unappreciated and resentful. Some autistics have the attitude that parents, no matter how supportive, cant possibly understand their feelings and needs.Whats being overlooked amidst all the misunderstanding and resentment is that there is a crucial difference between the autistic civil rights movement and other historical struggles for equal rights: Autism is a very recent cultural construct. Its not like gender, which always has been seen as a major and immutable human difference (except as to the small number of intersexed and transgender folks, who still are far from achieving full social acceptance). Its not like race either, because societys racial categories have existed for hundreds of years and because the vast majority of parents are categorized by society as belonging to the same race as their children.Some autistic activists contend that neurodiversity is solely a matter of disability rights and that parents who have no diagnosis are not part of the autistic community. I strongly disagree with that point of view. The current autism spectrum categories, which became part of the DSM-IV in 1994, are extremely vague and arbitrary on how to identify an autistic person. When making a diagnosis, psychologists look at characteristic childhood behaviors such as hand-flapping and spinning. Because such behaviors are less likely to be observed in adults, it is often difficult for a psychologist to determine whether an adult is autistic without detailed information about his or her childhood development. Also, because useful services for autistic adults are few and far between, adults often have no reason to seek a diagnosis, even if they recognize the possibility that they may be autistic—and, of course, there are many who do not recognize it.The inevitable consequence of all this diagnostic ambiguity is that, although there are parents who had behavioral patterns and cognitive traits quite similar to their autistic children when they were growing up, most of these parents have not been identified as autistic themselves. They may—or may not—have enough autistic traits to fall within the DSM-IV criteria, but they and their children have significant neurological similarities. In my view, these parents and their autistic children are part of the same genetically related minority group—the same "tribe," so to speak. To that extent, societys prejudice against autistics is a form of racism, and the parents who want to join the struggle against this prejudice should be welcomed as members of the autistic community, whether or not they are perceived as having a disability.The term Broader Autistic Phenotype (BAP) sometimes is used to describe individuals who have autistic traits that are not deemed to be clinically significant. For lack of any other term, Ill use BAP in this post to refer to the "tribe" of families that have multiple autistic and close-to-autistic members.Because BAP families do not have obvious racial characteristics such as skin color, its all too easy for the parents, most of whom grew up thinking of themselves as "normal," to be persuaded that their child is suffering from a mysterious affliction and that they must defer to the experts advice on what to do about it. They are taught to mistrust their own instinctive knowledge of how to raise their children, as well as the familial wisdom passed down through generations of BAP ancestors, and to rely instead on therapists.A while ago, Joeys Mom wrote a comment on one of my posts describing how some parents can communicate with their autistic children in ways that often go unrecognized by modern society:Ive always wondered about the "autistic communication" thing. I know my son has a terribly difficult time with language, but even when he wasnt pointing or speaking, we still understood him and had understanding with him. We now know it wasnt the "normal" kind of communication people have, but it was definitely there, and is still there—little body movements, cues, clues.Some parents of autistic children have an innate understanding of their childrens feelings and needs. We should not be treating these parents as outsiders or adversaries; instead, we should encourage them to see themselves as part of our community and to take an active role in the process of defining our "tribe."Allowing our community to be defined exclusively by psychologists forfeits the ability to define ourselves as other minority groups do. When some of us argue that the autistic community should consist only of diagnosed autistics, so that we can be in charge of our own destiny, what theyre really saying is that we can be autistic only if a psychologist tells us we are. Theyre so worried about parents having any influence in our community that theyll happily turn over complete control to the psychologists, while deluding themselves that this will result in greater self-determination. Ive noticed that even people who voluntarily choose to identify with the autistic community often use the term "self-diagnosed," meaning that after comparing their behavior to the DSM-IV criteria, they decided that it matched. There is no recognition anywhere that we have a right to define ourselves as part of a cohesive social minority group. If the diagnostic criteria were to be changed tomorrow, many of us would meekly go and visit a psychologist and ask if we were still autistic. That is the complete antithesis of self-determination.Our cultural heritage is being taken from us, our children are being denied equal rights and taught self-loathing, our governments are openly targeting our community for genocide—and we dont even know who we are. (Source: Whose Planet Is It Anyway?) -�[Read�more]

Muchas gracias to Mum is Thinking for sending me an e-mail alerting me to a juicy post by Ginger that analyzes Autism Speaks Form 990 for the year 2006 and discusses, in embarrassing detail, just where Autism Speaks money is going."Three members of the Board of Directors received $2.5 million for their own organizations," Gingers post observes, and "grants are primarily going to those representing institutions that are reviewing the grants. There is no indication that these conflicts are independently reviewed."As we all know, Bob Wright got fired from NBC because it became glaringly obvious that he wouldnt know a conflict of interest if it bit him in the ass, and it looks like hes been up to his usual tricks at Autism Speaks. No surprise there.Among the hefty salaries being paid by Autism Speaks, theres $168,000 to Alison Tepper Singer. Looks like talking on video about murdering your daughter, in front of your daughter, can be a lucrative career choice.And speaking of That Video, as reported by Fox News, Lauren Thierry has accused the Wrights of not paying her for producing it. Theyre not even paying for her to travel to film festivals where That Video is being shown, she complains. Oh, the horror.Gingers post also noted that Autism Speaks expenses included a line item for a private jet plane, used for entertaining. Just think about how many bus passes that money could have bought for non-driving autistic adults, if anyone at Autism Speaks really cared about autistic people.Theres a shiny silk designer purse in that sows ear, though: At least the huge amounts of money that Autism Speaks has been squandering on jet-set extravagances didnt go toward developing the prenatal test. (Source: Whose Planet Is It Anyway?) -�[Read�more]

When I started to write this post, I got the word "befrazzlement" stuck in my head. I know its not a real word. Its just something that my subconscious mind, while trying to verbalize why I need a vacation, constructed when it couldnt come up with anything suitably full of good solid Anglo-Saxon fricatives.Maria von Trapp (the real-life Maria on whose life "The Sound of Music" was based) wrote that when she first came to America and knew very little English, she mistakenly thought that the German word "bekommen," which means "get," was the same as a similar-sounding English word. When she went to do her grocery shopping, other people gave her some very strange looks when she said that she wanted to become cauliflower.I havent had any mishaps as embarrassing as that lately, but I have been feeling as if Im mentally juggling too much. Not long ago, I got discombobulated by a tiny, unimportant, completely irrelevant change in my work. Some computer files got renamed by The Powers That Be and consequently ended up in a different place in an alphabetically indexed list, which shouldnt have been a big deal, but I had a very hard time concentrating for the next few days. I havent taken any vacation time since the Christmas holidays, and I really need a break.If I had Bevs skill with graphics, I would illustrate this post with a befrazzled cauliflower in front of a computer vociferously voicing fricatives. Alas, thats not one of my talents, so youll just have to imagine what it would look like.Starting now, Im on vacation from work, blogging, and pointless cultural expectations. Ill go barefoot, eat chocolate-dipped ice cream cones and gummy bears, and lie down in the grass and admire the dandelions. Possibly all at the same time. I wont carry a purse or any other artifacts of being a proper responsible adult. The weeds in my garden can have a reprieve from execution. Ill talk to myself and sing goofy songs if I feel like it. Ill lean my head back over the edge of the couch and contemplate what it would be like to walk around upside-down on the ceiling. As for that annoying item of modern technology that rings when other people feel like chattering—it can go away and play with its friend, the alarm clock, in the land of disconnection.Ill be back to posting in a couple of weeks. Dont get in too much trouble while Im gone, yall. (Source: Whose Planet Is It Anyway?) -�[Read�more]

Because we are the fortunate owners of a pool, during the Summer the children bathe every day. I had wanted the boys to go to the local pool for formal swimming lessons, because they did not take ‘lessons’ well, from me. I thought an objective and professional teacher might have more luck. The echoing noise and crowds proved disastrous. I did what I normally do in such situations, give up and try later. Since we had a pool, I decided that as long as I could get them all in daily, they would just pick it up over the years. [translation = osmosis!] No rush. As long as they were happy in the water, [which took a while] that was good enough for me.After each ‘swim’ I would hop out on the side where a stack of towels waited. Being the demur and dignified person that I am, I would stand on the side with a towel opened wide, flap it like a Toreador and sing the matching song. At the crescendo, my daughter would rush out to be wrapped up. The boys loathed this exercise and refused to participate in such a pointless and futile exercise. They made their disapproval known by screaming during the few seconds that it took. [translation = always a trade off between children] I watch my youngest son swim across the pool. This is the first year that all of them are afloat and reasonably secure. I watch him speed across the width of the pool sideways accompanied by a great deal of splashing.An expert could supply us with an accurate definition of ‘swimming,’* but I probably wouldn’t like it, so I decide it’s better to make up my own. My own definition of ‘swimming’ would be something like, ‘moves through the water without the aid of touching the bottom or side, or being pulled by a third party, not necessarily on the surface. [translation = independent] This suits my purposes much better. I watch him carefully trying to work out how exactly he is getting from point A to point B through the splashing water screen. His legs pedal frantically, as if he were on a unicycle, perfectly upright. His perpendicular little body moves sideways? His arms are clamped to his sides, bent at the elbow but both rotate in the same direction like propellers. [translation = high speed.] It is quite remarkable to witness. How does he have the energy? It looks like such hard work. It is his own invention, as at the tale end of summer last year, we were still working on doggy paddle. [translation = compulsory arm bands /water wings]I am just getting to grips with this new ‘free style,’ when he changes tack entirely. He launches himself into a leaping splat, a cross between butterfly and a bi-plane. It bears no resemblance to anything he has been taught and I cannot imagine where he might have seen something similar? His sister pauses to observe him as she has been given strict instructions to give him a wide berth, due to his status of ‘novice swimmer.’“What is he doing?” she asks, perplexed.“I’m sure I have no idea,” is all I can offer. Junior persists, oblivious to the other swimmers. He moves into third gear, a whale, a body that rises and falls, breaking the surface with waves, as he lollops across the pool. [translation = complete with blow hole spurts] He comes to the edge and puts out a steadying hand, winded and slightly breathless.“O.k. time to get out guys!” I call, opening a towel for my daughter. [translation = the same way I have been doing for the past eight years. The boys bob about, heads just above the surface like a couple of sea otters. Both watch as I sing our ditty, “hey guys, why don’t you do it too?” she calls over her shoulder as she charges into my arms. I wrap her up snuggly like a Swiss roll, hobbled. She turns back towards the boys, expectantly. “Come on you two!” she commands, “mum! Get him a towel!” she barks. I hold it out gingerly. “Sing it mom! Get out of there when we reach the end!” she bellows. We sing together at the boys in the pool, who half cover their ears and bounce in time. On cue they both plough out of the water and huddle into one towel and one pair of arms. They clunk skulls of course!*Inflected Form(s): swam /swam/; swum /sw&m/; swim·mingEtymology: Middle English swimmen, from Old English swimman; akin to Old High German swimman to swimintransitive verb1 a : to propel oneself in water by natural means (as movements of the limbs, fins, or tail) b : to play in the water (as at a beach or swimming pool)2 : to move with a motion like that of swimming : GLIDE If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

With two IEP’s and a birthday behind us, I am now free to formulate a plan. As with all plans, logic dictates that you start at the end and work forwards. We leave for England on Wednesday the 13th from San Francisco Airport for our annual pilgramage. 529. 3 hours check in. 528. 30 minutes fiddling about with baggage and parking. 527. One hour drive. 526. Put children in the car. 525. Collect children from school………………………………………….351. Cure aeroplane phobia in one child – remember that the other one is phobic too but goes on shutdown rather than meltdown.350. Ensure all electronic bribes are packed, together with power packs, emergency power packs, spare batteries and those transformer thingies.349. Pack sufficient catering cartons of goldfish crackers to sustain life for one, during a two week period. [translation = fortnight]348. Buy additional suitcase for goldfish…………………………………………267. Ensure that essentials are in hand luggage – cuddly blanket, cuddly sable, small golden thing.266. Put small golden thing in it’s own large bag for safety.265. Buy additional hand luggage sized suitcase for small golden thing.264. Check whether ‘security’ permits nail clippers in hand luggage.263. Wean junior of the talisman of nail clippers prior to boarding aeorplane.……………………………132. Remember that we’re traveling on our American passports – to avoid confusion at immigration, acquire an American accent to match.131. Unpack the books, too heavy and you know you’ll never have time to read them.130. Consult speech therapist – replace last years mantra – ‘plane fall down, plane fall down, plane fall down,’ at 50 decibels, shall NOT be repeated this year. [translation = especially during the 3 hour check in – yes that was us]129. Practice whispering, ‘plane fall down, plane fall down, plane fall down.’128. Research ‘what is the most obscure language?’ Then translate ‘plane fall down, plane fall down, plane fall down,’ and commit to memory.127. consider teaching him how to say ‘plane fall down, plane fall down, plane fall down,’ with flags. [translation = the joy of crossing the mid-lines]126. Buy Wedding Anniversary card for spouse so that we can celebrate in our traditional manner on our return flight date, surrounding by three of our little lovies.………………………..35. Can I have the single aisle seat all on it’s own this year?34. Take paper version of all relevant telephone numbers and addresses.33. Give all children a refresher course on the essentials of England-- yes they have shops- high fives are not compulsory- they do have funny accents- get your fries and chips straightened out- even though it is not green it is still proper money- it is not ‘dark, dingy and wet,’ I was lying when I said that- the natives are essentially friendly…………………………….6. Pack sun glasses for everyone or some other disguise. Mackintoshes and wellies?5. check to see if the ‘bolter’ will still fit in the baby reins now that he is six and a half?4. Train the bolter not to bolt. Buy additional safety pins to the extend life and girth of baby reins.3. Pack mattress covers, plastic table cloth and two blankets to cover their sofas.2. Buy additional suitcase for these items.1. Bring down suitcases from the attic.Aren’t holidays fun!Although I have yet to add the time factor to each item accurately, my powers of deductive reasoning tell me that I need approximately 5 years, 2 months and 14 hours to be ready on time.For anyone planing on leaving on a jet plane then nip over a visit my pal Linda , at "Are we there yet" and her post on the 4th of June,for some much more useful information.If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

Toileting issues are a huge deal for parents of autistic children. Many worry about the social aspects of this delay. Others are weighted down with the practicalities of laundry. [translation = as well as carpet and upholstery cleaning] If potty training is a hill to climb for the average parent, then toilet training is Mount Everest. [translation = jolly big European goal] There are so many complexities associated with this ‘basic skill.’ It’s not just the sequencing of doing the business in the right order, or having the fine motor skills to fiddle with zips, buttons and snaps but also the motivation. [translation = why should I stop what I am doing now, to go and do something so dull and or challenging?] As the parent to two autistic children, I have a tendency to trample all over them. Although I frequently complain that I don’t understand them, more often than not this is because I’m not listening properly. As a result, I steamroller over my children without so much as a by your leave. I make assumptions. [translation = the wrong ones] I am too quick to judge. [translation = cynical, pessimistic old bat] From a few months back……I stand at the stove stirring supper. [translation = lay the table, wash up, make pack lunches and do all the tasks possible during their 30 minutes TV time] My son appears in the kitchen before me make a statement of intent.“I need wee!”“Oh! O.k. thank you for telling me that dear.” He doesn’t move, so I watch him for a second, uncertain. We moved past that stage a long time ago. [translation = we had a long period when they would announce that they needed to use the toilet. This was great progress because they were recognizing the ‘urge’ and verbalizing a need.] I thought at the time that they basically wanted me to ‘empty’ them by remote control so that they didn’t have to leave an activity, but it may also have been inertia – ‘please prompt and remind me of the next step.’“I need wee!”“Great! Nip into the bathroom dear.” What is going on here? We are way past this. Is this regression? Is he losing skills? Help!“I need a wee!” It doesnt seem that long ago, that I would have to carry someone to the bathroom. A child would sit cross legged on the floor with a toy or talisman in each hand. I would lift him like a statue. He would hold his position, cross legged and toy in each hand. More often than not he would be naked, so I would simply park him on the toilet and wait. His arms would remain bent and holding the toys. [translation = he had no active role in this exercise]“Do you want me to come with you?” Accompanying individuals to the bathroom has only faded in the last 6 months. Prior to that neither would enter the denizen of the toilet alone. Does this mean that it’s come back to haunt me? I dither. Do I accompany him and take a step backwards on the progress scale or do I risk him having an accident where he stands?“Off you go!” I twirl him around and point him in the direction of the bathroom, just in case it’s slipped his mind where that room is located. [translation = often during times of sensory overload, he forgets some of the basics, or can’t retrieve them, or they’re not important enough to bother retrieving]He takes a step or two towards the bathroom and then stops dead. He pauses to process and then snaps back round towards me to shout “I need wee!”I give up, as minutes are passing. He is so much older now that the occasional accident causes untold distress. Self esteem is pivotal, I will not permit it to be eroded. His sense of social awareness is zipping ahead. I take him by the shoulders and propel him towards the bathroom, “I’ll come with you dear. Come along.” [translation = wiped out six months of progress with one moment of weakness] His hands fumble about his trousers as they often do at such times. I’m tempted to yank his trousers down to speed up the process, but I know that he can do this. I wait. I watch. Should I prompt or wait for him to join the dots? [translation = exercise those synapses, strengthen those neural pathways] What is he being distracted by? Where has his sequencing gone to? Hundreds of carefully engineered little steps come back to swamp me. Teaching people to use their hands to assist - hands are our friends, they help us. [translation = 17 steps to task completion] Not to mention hand washing and drying! [translation = thirteen steps]“I need wee!” he repeats. Is he stuck? Is this one of those little word circles? Has he caught this exceptionally annoying motor mouth habit from his little brother? Will I be deaf, if this ends up being double motor mouth? His trousers flop to his ankles as he sits down on the top of the lid of the toilet, “I need wee!” I am becoming more and more confused. Why sit if he wants to wee? Weve already mastered that step. “Up you get dear, you forgot to lift the lid, quick before we have an accident.” Hes losing it! Do I need to stick up the sequencing charts again? Where are the sequencing charts? Did I recycle them? I am an idiot! [translation = too swift to assume that a skill once mastered, will remain mastered indefinitely] He stands hobbled by his trousers, hesitant, neither up nor down. He lurches away and stumbles out into the family room. No! Not Houdini time again! I bumble after him. He points at the television screen, “I need wee!”I look too. What is that? It’s a Wii. Poor benighted child!If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

One of the many difficulties that one of my son’s has problems with is the issue of choice. For some reason a choice between A and B is a stop sign for him. Although I have researched this hurdle in detail, I have yet to come up with a satisfactory explanation for the matter. [translation = or satisfactory solution] This is one of our many on going campaigns, helping him to choose. His inability to choose is crippling and the source of a significant percentage of his current meltdown quotient.He appears and pirourettes before me, coming to a slightly unstable halt. He arranges himself at a jaunty angle. [translation = plus cheesy grin]“Don’t you look smart! Doesn’t he look smart mum!” [translation = well attired not clever, nor sarcastic] I look at my son. I bask in the glory of being granted unfettered access. [translation = 5 years ago I was not permitted to look at him. If my eyes dwelled upon him, he would crumple into a heap, scream and curl into the tightest ball. Do you know how difficult it is to try and not look at someone? Surely you’ve tried, occasionally, not to meet someone in the eye? How difficult was that? Did you find that your eyes kept flitting back, just to check? How difficult would that be if that person was your child? What would you do if your gaze was a form of torture? What kind of monster must you be to invoke such a response? What are you doing wrong? How can you make it better? Why is this so completely incomprehensible? How can you try to understand? Are you blind to the theory of mind? Can you not get inside their head and understand? Who are you? What are you doing to this child?]“Indeed he does. You are the smartest Birthday boy I’ve ever seen.” I’m not sure if I’m gloating or excessively happy? His sister smooths the fabric of her frock. [translation = sun dress with matching shorts] My son observes the scene, his father, his brother, his sister and me.“You too?” he stutters.“Me?”“Yes.”“What about me dear?”“You are gonna, gonna, gonna…..I mean, you’re gonna ch ch ch……put on dah frock.”“Yes, I’m going to change in a minute, put on my best T-shirt.” He makes a little gasp, takes a step or two in several different directions from a static point, stands to attention, cocks his head on one side, gives his head a little shake before saying “you are gonna, gonna, gonna, put on a T, a T, a T…….a party frock for my party?”“Oh no, just jeans and my best T-shirt.” He clamps his lips tightly together, a cartoon of disappointment and disapproval. He is a rigid pole, vertical at a 15% angle. How does he do that without falling over?I hover, “I don’t have any party frocks anyway.” He’s on me like a whippet, “yes you do. I have seen dem. I see dem in your closet. Lots. Lots of frocks.”“Yes, but I haven’t worn those for years…….we lead a different…..well….. the thing is…”“You go put on dah frock for my birthday party!” It’s more of a command rather than a request.“Well, I…….you see……I’m not sure……maybe……”"Party frock!" he nips."But I, ..well, but er..""No ifs, no buts, no coconuts!" he quotes with aplomb. Where did that come from?"I dont know if I can er..."He steps towards me, takes my hand and looks up to my face, “it’s o.k. I can come and help you do dah choosing.” So if you see a crusty old woman at the equivalent of Macdonald’s, wearing a tiara, don’t be too quick to judge. [translation = "Rats to the theory" of mind.] Please excuse crooked feet. They are perfectly co-ordinated with the other end. [translation = crooked teeth]Post Script [translation = added later after a little early morning reading] We who have young [or teeny tiny] children look to people who have older children so that we can steal their crystal ball for our own benefit. If youre experiencing a little hurtle and wonder if your kiddie winkie has that empathy then take heart and peek into the life of an "expert."If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

Of course there are several, but we’ll start with an important one, namely shoes. All shoes should be comfortable, that should be part of the definition of a shoe. If a shoe fails to be comfortable it instantaneously transforms itself into another category entirely, namely a means of torture. Additionally, the ideal shoe should be red, in fact I think it should be compulsory that all shoes are red. I would sacrifice, that is to say ‘trade,’ red for comfortable. [translation = beware of women in comfortable shoes] I expect it would surprise you to learn that my first ever pair of shoes were red? [translation = the newly hatched duckling fixates on the first visible object] I of course, am in a position of power, since I have the purse, which contains the means to acquire the shoes. [translation = greenbacks] I wield my consumer power, for my children and their footwear too, or I would do, if anyone would honour me with the chance to put shoe leather close to the soles of their feet. [translation = or it’s synthetic equivalents] Feet have many different qualities, few of which are truly appreciated. Until this current crop of children, I was unaware that feet have rights. [translation = we are in America afterall] Around these parts, feet have the right to be unfettered and free to pursue happiness. As with all things American, the feet have to learn that with rights, come responsibilities. The feet have the responsibility to be protected from themselves and the many textures of the world that are out to get them. [translation = do them damage] As with most things in life, it’s a trade off. The trouble with the trade off, is that no-one can decide how much to trade. [translation = the barter system] Essentially the whole matter is a dichotomy without resolve – my feet must be free, my feet need armour. How does one resolve such internal conflict? That’s right! Very noisily. Now that my children have advanced up the fine motor skills learning curve, to be able to deal with the vexatious issue of Velcro [translation = tactile defensiveness and noise abatement society, due to ripping sounds] they are able to put their own shoes on by themselves. Hallelujah! [translation = with prompting] Thank goodness for the end of the sock season.It is a rare sight to witness a person in the midst of this quandary. [translation = is it?] The shoes are on. The shoes fly across the room. They are retrieved and screamed at, given a few slaps to teach them a lesson, then they’re on again, and then they’re in orbit. It would, of course, be very unkind to laugh at such a person. [translation = I recommend duct tape] If two people are in the middle of the same quandary, at the same time, it is probably better to leave the room and compose yourself.On your return, it would be a good idea to remind your children of the many things that you have said many times before. Commiserate with your children. [translation = validate their dilemma] Concur with the willful conspiracy of shoes. Use all the tried, trusted and familiar phrases that you have been using for as many years as you have been using them. Ideally, modeling the correct behaviour can be very effective. You probably realize that you are in a groove and might wish to add a dash of something new. [translation= take care, this doesn’t work if you do it too often] Modeling or copying, as best you can, their behaviour, can sometimes be more effective still. [translation = take care, you don’t want to come across as mocking or taunting them, timing is crucial] Obtain your own shoes from the garage and join in the shoe fest. Berate your shoes before your children. For some reason, biting your shoes has a particularly positive effect. Worry your shoes and shout at them a lot. Cast them aside, being sure not to knock out any small people with your bad aim. [translation = and boat sized shoes] If you’re lucky, someone, maybe two people will each bring you a shoe and help you. When you hear little voices parrot back your own words, take care to swallow hard.If youre looking for some helpful advice on some of the many different therapies available for someone you know, here are a few from my good "pal," because we are all trolling through a similar learning curve.If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

Although I speak English, went to English speaking schools and fulfilled their curriculum requirements, I don’t recall ever being taught English grammar formally. [translation = this is probably why I have such trouble with foreign languages] As luck would have it, I am expanding my knowledge of English grammar at my current advanced age of 46. I can manage noun, verb and adjective on a good day, but anything more than that is a bit hit and miss. I have read "Eats Shoots and Leaves," in recent years, but that was more for the purpose of entertainment rather than education. Between You and I gives me a "ghost" of a chance, but on the whole I have other more pressing matters to tie up my brain with.Strangely American schools teach English Grammar. [translation = as does "TEACCH"] This is proving more than a challenge to someone with such a tiny brain as myself. [translation = can’t teach an old dog new tricks] I struggle with third grade homework. [translation = and second and first grades too] More often than not, I am completely flummoxed by the old Kindergarten worksheets too. The sheet of paper has twelve little pictures for you to identify, but because it is in American English rather than English English, I am a hindrance rather than a help. We sit at the dining room table fighting with homework. [translation = times three, although my maths skills are similarly challenged] They are simple line drawings, not that I think that coloured pictures would necessarily help. Even after all this time, whereby each of my children progresses through the school system, I still have a 33% failure rate in identifying these little pictures. I know that he can complete the whole thing in under a minute, but instead he prefers to paw the paper and drag out the whole exercise for the best part of an hour.“It is a compound word?”“Is what a compound word?” “Chocolate pudding.”“Er, no that’s two words, not a compound word. Seashell, sea and shell stuck together would be a compound word, or rather, is a compound word.”“Oh.”“Anyway, stop messing around, lets get this work sheet done.”“I can have a not compound word now?”“How do you mean?”“Can I have my chocolate pudding now which is not a compound word?”“You can have your chocolate pudding after you’ve finished your worksheet.” He sighs and drapes himself over the table.“Look at the sheet lovey. Ooops you’re drooling. Come along. Look at the picture.”He looks and wipes and sighs. I nudge. “It’s a bed dear. B E D, bed. Can you write it on the little line underneath?”“It not bed.”“It is. Look! Look at the picture dear.”“No bed.”“Just three letters. You can do it.”“NO BED.” My daughter leans over, “he’s right.”“What do you mean he’s right?”“He’s correct then. He’s right and you’re wrong.”“How else are you supposed to spell bed may I ask?”“C O T.” Well really! “O.k. lets move onto the next one then.”We trudge through the worksheet. [translation = amid much parental pain] “What is this a picture of dear?” Now I really know the answer, but he has to find it for himself.“Come on luvvy, it begins with a ‘c’”“I know dat.”“Good, so why don’t you just write it down here, on this little line.”“No.”“Only three little letters?”“Not three, four.”“It’s three dear, you’re already written it once.”“NOT THREE, FOUR!” he bellows.“Cot dear, just three letters.”“NOT COT!” His sister leans over, “he’s right.”“What do you mean he’s right?”“He’s correct then. He’s right and you’re wrong.”“How else are you supposed to spell cot may I ask?”“C R I B.” Well really! He finishes up writing out the four letter word. [translation = I swallow all of my own four letter words]“Now I can be having my chocolate pudding that is not a compound word?”“Yes dear, of course. Well done for finishing.”“You are sure?”“Er…yes, of course I’m sure. I mean, what am I sure of?”“You are sure that chocolate pudding is not dah compound word?”“Yes, I’m sure. It’s two separate words and they’re not stuck together.”He sighs with an air of melancholia. The English language, American or English is curse to one and all.“O.k……… how about.......chocpud, it is a compound word?”“It is now.”I am beginning to appreciate that this isnt just a pond issue. [translation = US v. UK] but also a Canadian v US division. [translation = arent they more or less the same?] If you like to cook, enjoy a challenge and are not following a gluten free diet, then you might enjoy this "recipe." I might enjoy it too when I can work out which continent I am cooking on?If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

I am not ear wigging, I am cooking. My daughter and her pal [translation = American friend] come in from the garage having chosen their snacks. [translation = in America it is commonplace to keep catering packs of excessive amounts of food in the garage] They nibble and play together in the family room. Spouse is out with the boys and the shoe campaign. “Yur sooo lucky to have brothers and sisters to play with!” says the only child.“Yeah.”“You have soooo many toys!”“Yeah, but they’re not really all mine. We have to share em.”“Yur sooo lucky to have brothers and sisters to share with.”“Yeah.”“So you must be real rich, huh!” she says incredulously.“Er, yes, um no, actually I don’t know?” The conversation ends prematurely as the clank of the garage door gives us an early warning of the boys’ return. The noise of the engine is drowned out by the screaming from the car, even though the inner door is still closed. Pal turns to my daughter, “gee is he louder at home than at school?” Her eyes are wide, her head pivots towards the sound, an owl. She goes to the door to watch, my daughter follows. They see spouse trying to extract junior from the car, howling. “Gee why is he cryin like that? Wuz he real, real bad or summat?”“New shoes,” she says unhelpfully. I hear the new shoes hit the ceiling in the garage. Junior now has a secondary problem. His feet are naked. Naked feet cannot touch the cement floor. Fortunately a few years ago I had some off-cuts of underlay [translation = carpet] left over. They create a safe passage from the car door to the kitchen door. [translation = a run way for the flight path] He bounces out of the car and his tippy toes propel him at high velocity to the interior of the house. The girls stand back, part the way, and watch the dust of his wake.When her mother comes to collect the play date victim, most of the windows are open due to the heat. [translation = too mean to turn the air conditioning on yet] As they leave I cannot help but hear wafts of their conversation.“D’you have a good time honey?”“Sure but they’re so darned rich! D’you know they have carpet in their garage!”“Really! In the garage?”Pity it doesn’t work as sound proofing too.If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

Back in ancient times, party favours had yet to be invented. In those days, a child would attend another child’s birthday party, without a parent in tow as chaperon. The child was at the mercy of the birthday child’s parents. On conclusion of the party, if you were exceptionally lucky, you would be given a piece of mangled birthday cake wrapped up in a paper napkin to take home.At some time between then and now, party favours were invented. These favours are purchased by the parent and given to;A] every child in your child’s classB] every child that attends the partyThe parent can make life difficult for themselves by ensuring that the favours match the sex of the recipient. [translation = or ensure that the favours are unisex] N.B. don’t forget to also buy the very expensive little bags, also sexless, that come in packs of 6 or 8 or some other inconvenient number. Good, [translation = creative] parents also decorate the bags. N.B remember to purchase sufficient yardage of ribbon for approximately 40 bags.The contents of the bags should ideally be the same in order to keep the peace. [translation = same may be boring for the recipient but it is better than different which provokes meltdowns] Technically, your child, the birthday child, should not receive a party favour bag because etiquette dictates that this is a gift for the invitee. [translation = ignore this rule as etiquette isn’t all it’s cracked up to be]So far so good. Now you are poor, but still have all the big things to do. It is tempting to skip the whole party favour bag nightmare completely, but that temptation should be resisted. This activity, of assembling the bags should be completed at the dead of night. [translation = whilst you are alone with no small people present to tax your efficiency and sequencing]So what have we established so far? That Party favour bags, together with their contents should be banished from the earth. [translation – forthwith] What possible justification could one have for such rashness? Oodles of justification since you ask. The modern child is already over toyed! Remember to breathe! Or is that just me? so there we have it ladies and gentlemen, consensus. On a scale of one to ten, how annoying are party bags? Exactly! I was going to say 17 and a half too.Now we have established the status quo, it is time for a rethink. Must we? Yes!Firstly, etiquette, as etiquette is paramount around here. [translation = anyone in need of an additional spit bowl?] American’s by their very nature, are overly generous. Guests always bring large and extravagant gifts, so the very least one can do is acknowledge their kindness in attending. [translation = danger money] What else?The distribution of the bags is the ideal opportunity to put all those painfully acquired social skills into practice, the give, the take, the words, now that he is 8. [translation = climb on your friend, without using any words, give him a bear hug to crush his little rib cage and kiss the nearest part of his anatomy that you happen to come in contact with] Great!But there are also more subtle skills, depending upon your children’s current disposition. Maybe paper is aversive. [translation = tactile defensiveness] Maybe the fine motor skills are challenged? If you are making your own party favour bags, you can simply cut circles of non-scratchy cloth, wrap the contents inside and close with a loose elastic band. [translation = unless you are on the ‘quatrefoils or bust’ stage of development]If you choose the contents carefully, you can produce a mini emergency therapy kit for the child, which has the added benefit of thanking the parent too. [gum, sunglasses, koosh, parachute guy, puzzles, kaleidoscope, whistle, gazoo…..all such ordinary little familiar things that can lead to therapeutic learning and play, extra special joy …….or a hideous meltdown]Lastly, it took Temple Grandin’s book, “Thinking in Pictures," to help me understand the role of novelty in the human psyche. I still don’t really understand the joy of the novel, but I know that it exists. If ‘novelty’ can induce ‘play’ then it certainly gets my vote. Post script - anyone have advice for those experiencing marital "disharmony?"If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

In the early 1980’s I was a young divorced mother of one. Mum’s would chat and drink coffee, whilst small children played. We would speculate about our children’s future. That one would follow in the family tradition and be a lawyer, that one a doctor, this one and that one, and on they would go. When it came to my turn, I would always said the same thing, “as long as she’s happy, healthy and normal, I really couldn’t give a fig.” They would giggle and tease, ‘surely I must have some higher ambition for my child?’ As far as I was concerned, with all the ‘new’ dangers that young people were experiencing at that time, it seemed a very lofty ambition.These days, with all the ‘new’ dangers that young people are experiencing today, such an ambition seems to be the pinnacle of achievement, although I’ve altered the motto to ‘healthy and happy.’ The healthy, I can manage as best I may, subject to the vagueries of the plague and other epidemics. The happy, is a bit tougher.It seems strange to me, that as a prime example of cynicism, pessimism and general doom, that the happiness of my children should be so important. [translation = grumpy, old, misery guts]Americans are entitled to ‘the pursuit of happiness,’ which is all well and good, but the constitution is silent as to how you nail it down, assuming that during your pursuit, you manage to find it in the first place. I can help my children acquire skills that foster a sense of achievement, self esteem and self worth. [translation = asking the rhetorical ‘why can’t you just be happy?’ doesn’t really cut it, autistic or otherwise] I am aware of the high incidence of suicide in the autistic community, and I can guess at some of the sources of their despair. I can visualize my boys as adults. They can dress themselves, catch a bus, make a sandwich, hold a conversation with words, and hopefully a lot more than that, but are they happy?What makes them happy now, may not make them happy when they’re older. [translation = growth and maturity] I am doubtful that a parent can change a child’s innate personality, even if I wanted to. The raw materials are there to guide and mould, but all the therapy, teaching and acquisition of skills in the world, is not going to ‘create’ a happy person.If you’ve come here for answers, then I’m afraid that you’ve come to the wrong place, [again] as I only have questions. Is it a legitimate goal in the first place? If it is, how do you choose the right path to reach the goal? Do you want this too, or are other things more important? Give me your best guess.I would add, that earlier today whilst I was reading "blogs" with a small person by my side, we came across a picture on this "blog". It caused great consternation as we are about to board a boeing 747. Fortunately, once I explained that a "jet plane" is not the same as a 747, the logic saved the day.If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

Many children, and some autistic ones, suffer a great deal of anxiety. Anxiety is often caused by predictable and understandable concerns. With youngsters, many of their anxieties come from a lack of understanding. Simple explanations can help to reduce their concerns and provide guidance as to how to interpret different things. One of my sons is overly concerned with tools that are sharp or made of metal. Knives, scissors and many other ordinary household items cause him grave concern. With my boys a great many of their concerns are unpredictable. They lurk ready to pounce when I least expect it.Prior to our holiday, I have two pressing tasks to perform – pluck my eyebrows and trim the Passionflower. I start on the latter, secateurs in hand. Two boys play inside behind the glass doors with their father and sister. [translation = still allergic to outside] They don’t watch me, but they check up on me every few minutes. [translation = any attention given to a parent’s doings, that does not have any direct benefit to the child, is to be applauded. I have spent far too many years being completely invisible] Inbetween whiles, I yell instructions at them, every now and then. Frequently, I have my back to them and shout over my shoulder. “Don’t put it in the sink!” “Try and share with him.” “I’ll get you a snack in a minute.” I know that they are miffed by this, that I appear to have x-ray vision. [translation = as all mother’s have] Two wheelbarrowfuls later, the vine is trim. [translation = two weeks of California growth is akin to an attack by Triffids] I nip back inside and check that all is well.All is well. Broadly speaking, I attend to matters of personal hygiene either very early in the morning or very late at night when I am child free. Today however, I am out of time. I must attend to my eye brows and attempt to make my eyes visible by trimming the thatch above. I have approximately three minutes to complete this feat. I nip upstairs stealthily. I put my nose to the mirror and try not to breathe. [translation = short sighted] With the tweezers in hand I attempt to remove as much hair in the general area of my brow as is possible. [translation = speed plucking is an unacknowledged skill.] Not for the first time, I consider whether a razor might be more effective. [translation = quicker] I achieve near baldness on the right side when I am rugby tackled by a screaming Banshee. “No, no, no, don’t do dat! Dat is bad! I love your wonky bad old eyes. I love dat they are old and mold.” I remove the tweezers from my right ear. [translation = stabbed] I look to my ankles where my youngest son is entwined, face down, eyes shielded by my moth eaten socks. I can’t bend down to him because I am hobbled by his vice like grip. His older brother leans against the door jam to survey the scene. I try to explain the concepts of ‘beauty treatments,’ to two clear skinned, perfectly formed male youths. It is an uphill battle.“But why?” seems to be the primary refrain to any further and better particulars that I provide to them, by way of an explanation. There secondary concern, oddly enough, is pain thresholds, not theirs but mine. [translation = "theory of mind be damned"]We give cursory attention to the OCD issues of personal injury, death, visits to the ER and other sundry related matters. I pop my glances back on and peer in the mirror. I calculate when another three minutes might be available to me, to tackle the other eye brow? After further discussion and reassurance, we make our way back downstairs. The boys walk in front of me, exhausted by yet another test of mental gymnastics. He puts a brotherly arm around the little one. “You know it’s o.k little buddy……she is always having dah other one you know.”“What?” he snaps back. It always sounds like an accusation. [translation = lack or regulation and modulation]“Dah udder eye in dah back of her head.”For a truly fascinating perspective on OCD in adults, nip along to my pal, "Lotta" on "Mom o Matic." Brave and insightful.If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

[translation = when ‘speaking’ is not your first language]Why do they do that? It is so annoying! You lean down to refill their bowls with food or water and they nudge you, spill everything everywhere, those darned cats. Why can’t they just hold back? It’s not as if they’re helping at all. It’s the same thing several times a day. Why can’t they keep their furry little heads to themselves? What is the point? I need to duct tape their tails to the floor at a discrete distance until the task is completed.I wish I understood this behaviour. I wish they could tell me why they do it? Why can’t I chat to a cat? There again, there is not a lot of chat around here. Speech delays mean that whilst there are now words, sentences, ‘chat’ isn’t high on their priority list. That’s not to say that they won’t wax lyrical on their given topic of interest, but a monologue is not the goal. [translation = engineer that reciprocal exchange] There again, the girls had a double dose of the chat gene. How much ‘chat’ can one household contain?I ask my younger daughter to explain this behaviour to me. [translation = animal planet addict] She rolls her eyes in response. [translation = what is wrong with my mother?] She’s growing up so fast. Soon she will be a teen, or should that be a tween and no longer wish to have any associations with me. I must try hard to keep the lines of communication open.I track down the next one. [translation = superhero defender of the feline population] Now that he can talk, I must seek out every opportunity to ensure that verbal communication is reinforced. I need to find a preferred topic of interest but not something that his main topic. [translation = Pokemon monologue]“But why do they do it?” I ask in exasperation. He looks at me, straight in the face, “because dey are cats,” he responds, un-phased, unruffled and slightly bemused. Verbal! How I love it.I find both these explanations unsatisfactory and seek out the little one, he who used to be animal phobic but is now a fan.I explain my query and then ask “but why do they do it? It’s so annoying!” I plead. He puts down his toy to give the matter his full attention. I see him calculate – ‘can I be bothered to talk to this woman?’ I need to avoid brushing on a distracter, not to be confused with a trigger. [translation = using a word that is of interest to him, such that your conversation becomes ‘off topic’ and then rapidly disappears down a rabbit hole to get lost in the warren] I push, “come, come with me and see the mess they make.” He holds my hand in an obliging manner and follows me to the utility room. I point at the cats. He lets his heels drop to the floor, which means he is going to stay. [translation = tippy toe walker] With hands on hips he examines the evidence and the cats in mid breakfast.“Dey are eat.”“Yes.”“Dey are eat dah falling down ones.”“Are they?”“Yes. Look! Dey are eat the falling down ones first. Dey are eat the mess first. Dah mess is gone.” He looks up at me. “I am right and you are wrong. Dey are not dah messy cats, dey are dah clean cats. Dat is not annoying.”Post script - [translation = post blog reading] At least my toileting issue are mainly limited to the cat litter variety, unlike "Niks mum," who I am sure would welcome some sage advice. Any sages around?P.P.S. As I was tidying up before departure I accidentally deleted my folder with my bookmarks for all the autism, disabled and special needs blogs that I visit other than those on the Hub. [translation = oops] So leave me your URL so that I can make a new one please. [translation = or explain how I can retrieve the bookmark]Cheers dearsIf you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

It is a curious development. Pal comes over for a playdate with my oldest son. This pal loves to play outside. [translation = typically developing peer] When we bought this house, it came with it’s own stick, a big one. At the top of the stick is a net for playing netball. I thought it was a bit of an eyesore myself, so I grew Morning Glory all over it as a disguise. This act did not endear me with the neighbours for some unaccountable reason. I was advised by those same neighbours, that the stick was meant for playing the popular game of baseball and that I should restrict my gardening activities to other areas of the yard. I was at a bit of a loss to know where the yard was, but I didn’t let that worry me unduly. But I digress.Pal is very keen to play this sport with my son. We spend a considerable amount of time hunting down a ball. Pal informs me that our balls do not meet the required American standard. I am slightly deflated by his criticism but promise to seek out a bicycle pump to remedy this fault, prior to his next visit.Pal attempts to dribble the ball. Instead it makes farting noises across the driveway. My boys find the flatulence of the ball to be an added bonus. [translation = hilarity] Pal is not impressed with either the ball or the guffawing laughter. [translation = foreigners fail to take sport seriously] I don’t really care one way or another. [translation = my boys are outside, a thoroughly loathed status at the best of times] My youngest son will not play at all. [translation = he must be the best and or win ] Pal becomes teacher. [translation = coach, but not the vehicle kind] He shouts orders in an upbeat manner. [translation = sounds pretty professional to me, but what would I know, since I am unable to locate a sports channel on the telly] Junior takes part tentatively. As an experience netball player myself, I can tell that he has great form. [translation = English game] Pal offers his opinion, “no, not like that! You play like a girl!” I am confused by the comment. Netball is a girl’s game afterall, ergo, he is playing jolly well. “Try it like this. Watch me. See! You hold it to your chest like this. No, no, put your hands the other way around. No don’t stick yur but out, bend yur knees.” He does rather look as if he is about to lay an egg. Junior adopts the pose and lobs the ball up into the air. [translation = shoots] The object of the exercise is to get the ball to fall through the ring. The object crashes back down. Junior is incensed that his first attempt [ever] is a failure. “I bad! I loser! I die,” he bellows. As he bellows, he bends forward, pulls down his trousers, [translation = shorts] and sticks out his derriere. Pal pauses. [translation = frozen and transfixed at the age of 8] Senior roars with laughter. This behaviour continues for the following ten minutes. I wonder how many of our neighbours are watching this development, as we cavort around on our driveway with a flat ball, three little boys and a net on a stick. I don’t imagine that they would consider this to be progress. Junior exposes his Spiderman underwear approximately 53 times. [translation = which corresponds precisely to the number of attempts he makes to throw the ball through the net]Later that night I discuss that matter with his father.“We need a strategy!”“We do.”“Which bit should we tackle first?”“There’s more than one strategy here?”“Yes, the ‘anti – trouser’ strategy and the ‘anit-negative talk’ strategy.”“Ah. Which one is worse?”“I really don’t know.”“Well the ‘anti-negative talk’ is already an ongoing campaign, so perhaps we could concentrate on the trousers. An anti-flasher strategy.”“Well, he didn’t really flash [translation = moon] he just displayed his undies.”“It certainly gets the message across loud and clear.” [translation = universal comprehension]“No meltdown though.”“A new form of protest that isn’t a meltdown is………good, ……right?”“Right!”“Good?”“Definitely, and he used words AT THE SAME TIME.”“Wow. We are moving into pastures new.”“He could probably get away with it in a pasture.” [translation = field]“Pity we’re so urban.”“Gosh!”“What?”“You don’t suppose he’s developing into, into…..a sporty type!”“Blimey I hope not! What on earth would we do with one of those?”“Can there be anything worse than giving birth to one of those athletic types?”“The tragedy of it all. How do parents cope with such a disaster?”“I can hardly bear to imagine. Too, too sad.”“There again, you did play rugby.”“Not by choice. Anyway, you played tennis, netball, badminton, and all those ‘throw the thing’ sports.” [translation = javelin, discus, shot put]“It was compulsory.”“So tell me? Is it more socially acceptable to drop your trousers in England or in the States?”“I’m afraid I have no terms of reference.”“?”If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

We are off on our hols, but we well be back soon. In the meantime, here are a few posts that you have may be missed before I joined the Hub. Leave me a little note so Im not all lonesome when we get back. [translation = chance would be a fine thing!]1. "The Joys of Autism - Progress for all"2. "High What?"3. "No Way Jose!"4. "I am not a princess"5. "Ear Wigging"6. "Static"7. "Trying not to be critical"8. "Plan A"9. "Hemorrhaging"10. "Mother Knows Best"11. "Umpire"12. "Fixations - what to do?"13. "Undiagnosed - are you quite sure?"14. "Tentative Steps"15. "Progress"16. "Wife Beating and recouperation"17. "Do we have to?"18. "Come in Number 2 your time is up"19. "Secretarial Skills"20. "A Rose"If you like what you read, send it to someone in need. (Source: Whitterer on Autism) -�[Read�more]

Over the last few days, Ive received more insults than Ive received in years, and had more of my words misinterpreted and turned into strawman arguments than I ever remember. Ive been called, specifically, a bigot, egotistical, prejudiced, and an exclusionist. What did I do to deserve these names? I stated - using the world leader because I dont know the right word - that the leaders of the autistic movement should be autistic people. That we should be setting our direction. I didnt call anyone names, I didnt say that non-autistic parents or professionals were evil, doing harm, or any of the much worse things I was called. But merely presenting this unpopular point of view was enough to bring the wrath of many upon me. My argument was taken to mean that I see a hierarchy in autistic advocacy. I supposed thats semi-true - I do think people inside a group deserve to be listened to more than people outside that group, at least when it comes to things concerning that group itself. Perhaps its because Ive grown up in a western US state, and seen what happens when rule is attempted from afar, without the common understanding of the actual culture. But I certainly wasnt talking about a rigid hierarchy where there is a head autistic, some other autistics under them, and on, eventually to the lowest of NTs, with reporting lines and clear statements of what is acceptable and not to think. Id never think such a thing, and in fact dont know of anyone who does. It certainly would be absurd. But I do think the direction of the movement - the people setting that - need to be autistics. Not a few autistics in key positions, but rather every autistic is already in that position. Its not about one or another voice. Its about the combination of voices from the entirety of those who identify as autistic. That is the position of leader that I was talking about, although now I realize that leader was the wrong word - with that word used, many were unable to read further and understand my meaning and what I was using the word to mean. Another argument is that I was trying to say the Autism Hub should be run differently. Nothing I said was addressed to the hub, although after the abuse Ive put up with this week, I will certainly look at it differently. (Im NOT, lest anyone continue yet another false accusation against me, talking about disagreement or even people that think autistics shouldnt be exclusively the people setting the direction of the movement; Im talking about insults, name calling, being told to shut the fuck up, and other similar types of attack - thats very different than presenting a divergent opinion; I do not feel attacked or unsafe in an environment where people disagree with me but remain respectful of the rights of others to also disagree) Ive been told that Im egotistical, as if I am the one seeking global domination and rule. Im not. Im a lousy person to even lead a subpart of a movement, and I know that. Thats why Im not part of leadership on any autism-related organization - there are better people than me for that job. Ive already talked about the segregation and equality aspects. I dont expect to choose the French parliament members, but I dont consider France to be spreading inequality because they dont give Americans a vote! I also think its perfectly possible - even without a vote - to be an ally of the French people. Ive also been told that I define autism by psychological terms, rather than social terms, because I insist on autistic people being the source of direction (which I note is a view that Larry and Kevin both share). I dont believe in that way of dividing people, and in fact Ive written much about it, including publicly challenging some autistic people who tried to eliminate much of the voice of the autistic community. Ive never opposed the idea of allowing anyone who identifies as autistic - for whatever reason - to be considered an autistic, and to have a voice just as loud as mine or any other autistic. In fact, I welcome it. That said, people that dont identify as autistic should not, in my opinion, be afforded the right to represent us - because being autistic is a social construct, not a diagnosis. Others have assumed I want every ally that is doing a good job in advocacy to pack up shop and leave work undone. Of course I dont want that - I believe, contrary to opinions of some about me, that every true ally is essential to our cause. I have no problem with the concept of allies. But, I also agree with Phil Schwartzs description of what an ally is. Any ally that meets Phils description is worth having in this fight, and I have no problem with ANY ally that meets Phils description. Yet others have assumed that I dont want parents to parent their children, or speak for their children. Thats not true - they need to speak up, and fight for services, education, employment, and basic life requirements for their kids. I would hope - and dont feel its too much to ask - that they would seek out the opinions of autistics on these issues. That doesnt mean giving up the right to parent, or the ultimate responsibility for their child - far from it. Ive always been very clear on my views that parents know their kids better than even another autistic does. But in advocacy, outside of the proximate needs of the child, I suggest that parents, even here, need to listen to autistic people. Is that too much to ask? Once again, Im not suggesting that autistic people do everything themselves. I am suggesting that for the overall direction - the goals that is (although certainly not in a rigid, written-in-stone form!) - come from autistic people. Thats the leadership Im talking about. Things like: Is a cure a good thing? Is behavioral therapies required? Is autism so terrible that a cure-at-any-cost approach should be used? Autistic people should answer these questions. Im not talking about an organization or the Autism Hub or any other such nonsense though, Im talking about the unorganized, non-heirarhical group of autistic people as a whole - and what overwhelming consensus emerges from this group (even if that consensus differs from my desires, I support this process, as I believe autistic representation is far more important than Joel getting his way). Allies should listen to us, and, if they can agree, partner with us. If not, they shouldnt claim to be our allies. Im not talking about preventing any non-autistic from making decisions and engaging in actions without getting an explicit OK from autistic people. If your decisions and actions support us, continue to recognize us as the goal setters, and follow the ideals that autistic people as a community believe in, then, by all means, do whatever you want! Ill support that. Ive also been told that Im manipulative - a common word, ironically, from institutions and other places of abuse, which is used to dismiss any form of self-advocacy. Of course I want to get my way - I feel very strongly on this issue. And, yes, Im going to try to persuade people to agree with me. Who doesnt do that? But that said, what Im advocating for is equal representation of autistic people, and the ability for autistic people to set their own destiny. Yes, we live in a larger world than autistic people, and we need to change that world. Yes, well need help to do that. But, no, we dont need others setting the goals. Thats the issue at hand. Its not the Autism Hub! (I clearly cant say this too often, because the idea that I have a problem with the Autism Hub keeps getting attributed to me, when Ive said no such thing) So, if youre an ally, and you follow Phils description of what a good ally is, I think youre doing an awesome work, and beg you to continue in the fight. If you dont follow that, then you arent an ally. I know thats harsh. Im sorry about that. Before you criticize me, I beg you to read what I write and look at how Im using the words leader, represent, movement, speak, etc. Im not using them strictly in a firm, rigid, hierarchical, authoritarian sense. Im not about building an organization, overthrowing the Autism Hub, or whatever other beliefs have wrongly been attributed to me in the last few days. I also beg people to not use disagreement as an excuse for abuse, in whatever form. It has a deeper effect than you might think. (Source: NTs Are Weird) -�[Read�more]

I screwed up last week, I let my emotions get away from me. Ive written about this before, about how my flat emotions are a result of trying to keep my emotional state in check, lest the emotions wash me away. Strong emotions are very difficult for me to manage, and Ill trade some of the extreme happiness I feel to not trade some of the extreme sorry and sadness. During this time, I was very hurt and sad. Thankfully, there were several things I was able to do so that I didnt hurt myself. The first was work - at least for 8 hours a day, I was able to focus on something that was relatively neutral on an emotional level (thankfully I have a good job, or this wouldnt have worked). I also slept a lot. I knew I wasnt going to hurt myself while sleeping, and I really didnt want to hurt myself. I knew that this would be a fairly temporary situation, based on past experience. But it was very real and very deep (and still is to an extent), and there was real danger if I didnt do something about it. But, what about the rest of the time? That still left a few hours each day when I was not working or sleeping. The first thing I did, something that I couldnt have done even years ago, was to tell another autistic person about what was going on. Im not sure this person quite experiences emotions the way I do (Im not sure that its necessarily an autistic trait versus something else), but I knew she, basically, wouldnt give me crap about it or tell me that I shouldnt feel like I do. I also know shes went through hard times, too. Because I feel very strongly about doing things that I say Ill do, I also told her (thankfully I was able) that I was going to let her know before I did anything dangerous to myself. I dont know what I expected her to do if I did tell her that, but I knew that having someone know would help if it got to that point (fortunately it did not). More than anything though, just having someone to vent to was important - some way to release the emotion a bit. I also considered my other friends, and tried to remember a couple of things - that they didnt want to see me hurt either, and that they truly would be willing to help me if I needed it. That did help too. I didnt mention this to anyone else, but I knew I could if I it seemed as if I was going to need to. Another thing I tried to do was to keep myself busy. I realized I was less likely to do something dangerous, and that the emotions were less likely to build in strength, if I was doing something else - especially things that got me out of my house. So, I took several long drives. I normally love drives, and a sign of how messed up I was emotionally is the fact that, when I got back from these drives, I thought, I didnt experience any joy doing that. But, while I didnt experience any joy, it also didnt make me feel worse, and it was time when I would otherwise have been simply thinking about how miserable I was, which builds on itself if you let it. I forced myself to spend some time around my friends, even though I didnt want to very much, because I knew being around people I like was likely to help. And it did. But I certainly didnt feel like doing that at first. I tried to perseverate on a few interests, but that just wasnt going to happen. I know Im in trouble when perseveration doesnt happen. Finally, Ive also tried to confront some of the stuff thats been a trigger - not the cause of this whole mess, but rather things that I might normally have been able to handle but which just made things worse during this state. Thats some of the hardest things Ive done, and I hope I dont have to deal with it for a while. I really need to find a way to manage my house - and maintain order in it. During these things, I was continually reminded of my inadequacy to maintain my house. In addition, I truly do need order around me, in spite of my inability to maintain it. I dont know how to solve this problem yet, and I know I dont have the energy to deal with it now. But it would have helped things if I didnt have disorder surrounding me. What scares me is that I have, overall, a great situation in life right now. I do have some good friends, I have a great job, Im not struggling financially or with my health more than normal. Ive got plans for things that I hope Ill enjoy doing this summer (although right now it seems hard to believe that everything is going to be enjoyable - but I know a couple of weeks ago it seemed like these things would be great, so its probably still this short depression thats talking). I also have friends that do want to help and who do care about what happens to me - and even if Ive not confided in all of them (mainly because I was trying not to think of how miserable I was when around them - so I could try to enjoy their company, which I felt was more important), theyve done a lot of good. That I have a good deal in life right now scares me for two reasons - first, I could lose many of these things. If I didnt have them, I know this emotional problem would have been much more severe than it was. The second thing, the one that scares me even more, is that a lot of autistic people dont have a great situation in life. Its really important that we work on that - its hard enough to deal with this stuff if you have a fairly good support system. Ill finish by saying that I am doing fine right now, although my emotions are certainly still screwed up. But Im no longer worried about it becoming bad enough to make me want to harm myself. Certainly Im going to try to be careful about what activities I engage in, although theres stuff that Ive left undone during this that really need to get done soon. So Ive still got a tough few days, maybe a week, ahead of me. The good news is that Im ready for the weekend, and Ive got very few plans for the weekend - I need the rest now. (Source: NTs Are Weird) -�[Read�more]

I see a lot of dissatisfaction with laws enacted by the government and services that these laws provide. This criticism is well-justified. However, sadly, Ive seen very few ideas on how to solve the problem. Its pretty easy to oppose a law. Its pretty hard to write one which make sense, is fair, can be funded, and may actually even get through a legislative body relatively unchanged. But we need to stop looking just at what is wrong with the system and start to look at what would make it right. However, the political process is certainly complex, and often is seen as a bunch of bullshit that makes no sense. Sure, there is elements of that, but I often see this charge waged by people who dont really think about what their elected officials job is. We need laws establishing services and rights for autistic people. In some cases the current laws are decent, but misinterpreted by courts - and thus need to be rewritten in a less ambiguous way (the Americans with Disabilities Act is one such example). In other cases, there are no laws where there should be laws (it should be reasonably possible to charge a school district employee with criminal child abuse). Im throwing this out to get people thinking. What laws do we need? How would you phrase it? How would you give adults that currently are slipping through the cracks services? Remember, there are some things that your legislative body will be concerned about. How would you answer these? 1. Is there a cheaper way to provide the same level of service? 2. How much exactly will it cost? Youll need to know cost per autistic person and the number of autistic people involved. 3. Can we afford that cost without raising taxes? If tax increases are necessary, how much and who? 4. How much will that cost increase over the next few years? With the current budget projections, will there be money for this? What strings are attached to the funding? 5. Are there other expenses which wont be necessary if we support this law? (for instance, closing an institution has costs and cost savings) 6. How do we know this law will do what it says it will do? 7. If it doesnt work, how will we get rid of it? 8. How do we ensure everyone who needs services will get them, but at the same time prevent massive abuse of the system (by consumers, providers, government agencies, and others)? 9. What happens if this law isnt passed? How did people manage before the law was suggested? In other words, why is it actually needed? 10. Who will run this program? How many people will be required to do it, and what will their salaries and other expenses be? How can the legislative body be assured that theyll have the money to continue to fund these positions over a long term? These can be really hard questions to get answers to. Thats probably why not too many good laws are proposed. A lot of people want government money, including us. Unfortunately, there isnt an infinite supply of money, and hard choices are made. Sure, theres a lot of waste. But what is the plan to cut waste for this program, and how would you do it exactly? What would the law to cut the waste and repurpose the funds look like? The other thing to consider - what legislative body? For many entitlements in the US, the money is allocated federally but spent in a State, so State laws are perhaps even more important. Yet other programs depend not on law, but on rule and regulation - in the US, at least, this is a completely different process. Yep, this stuff is hard. But if no one suggests reasonable laws, well never see reasonable laws. The question I leave with my readers: What should be changed? How? If we cant answer these questions, how can we expect our elected officials to answer them? (Source: NTs Are Weird) -�[Read�more]

A friend is writing an ethics paper looking at the issue of disability and the value of life. In response to her, and also because I think this is a very important topic, Ive posted it here as well. She asked me, specifically, to talk about some of the cultural (disability culture in this case) elements involved with such hierarchies. The first thing that comes to my mind, as far as cultural consideration, is the horrors that disabled people experienced in the holocaust, under the Nazi T4 program. Not only were we euthanized, but we were also used for so-called medical experimentation. People with physical and mental disability were given experimental drugs, subjected to extreme air pressures, starved, had their blood replaced with other chemicals, used as forced labor, and many other unspeakable horrors. Most of these were exceedingly painful. But of course the program didnt start with these things, nor end with these things. We are all aware of the end - the mass execution of millions of Jews, the majority of which were not disabled. The killing and abuse of disabled people was, in this sense, a gateway, a way of testing methods of mass killing and gaining community support for the idea that some people were more expensive and used more resources than others. In the beginning of this program, school children would be taught about the cost of disabled people, and how any pure German who faced poverty could blame the fact that tremendous government resources were spent on those people, who of course were seen as very different from pure Germans. As this progressed, combined with input from both the Nazi establishment and US eugenic movement, sterilization was chosen as one solution to the problem - stop those with bad genes from reproducing. In many cases, this sterilization was done without even the knowledge of the disabled person or their families. As time went on, however, this progressed to the full T4 program, in which perhaps millions of disabled people were eventually killed. Because of this history, its very uncomfortable to disabled people - just as it would be to a Jew - when life is valued differently based on characteristics such as disability or race. Another important aspect is the social model of disability. In this model, essentially, everyone has needs. Few people can, for instance, grow their own food in society today. However, we have significant accommodations in society, all of which cost a tremendous amount of money, to provide food to those who are food growing challenged. This special accommodation requires millions of over-the-road vehicles, millions of workers, a vast majority of the planets land, hundreds of thousands of ships, hundreds of thousands of rail cars, government subsidies of farmers and transportation routes, and a multi-level distribution system to ensure that the food gets to those who need it. Its an incredible logistical challenge to ensure all of us non-growers can eat, and the cost to society is tremendous. Its important to notice, too, that once the food is eaten, it no longer serves any productive value to society - in fact its now a health hazard, a waste product. Its simply consumed. Yet, growing food isnt seen as an accommodation. Only things that are non-normal are seen as accommodations, and then only when the person receiving them lacks sufficient social status (such as being a person with a disability). For example, its considered an accommodation - even shameful - for a person labeled with mental retardation to need someone else to cook food for them, so that they remain fed and safe. Yet, I imagine that President Bush does relatively little cooking. I imagine the President is not alone in this, at least not among the peer group of rich Americans. I imagine that the President also receives many other accommodations, such as not carrying even his own money or passport with him - other people provide that service to him. One of the arguments made is that the cost of accommodation of disability is exceedingly high. Facts, however, disagree. Typically, the cost of accommodating a disability is significantly less than the cost of providing this incredibly complex food distribution network. In the area of employment, the Job Accommodation Network indicates that most job-related accommodations cost less than $500. These are not major expenses compared to the cost of ensuring you have food, heat, and water - simply because you cannot get these things on your own. The difference is the social stigma attached to accommodations, and the determination of what accommodations are acceptable - that is, what accommodations are a cost and which ones are not. A grocery store isnt seen as a cost to society, while someone to cut up your food so you dont choke is, etc. The idea with the social model is, essentially, that society, not mental or physical capability, is what defines disability. The fact that society doesnt routinely remove barriers is the reason that these barriers are a problem. Ive written on these things before. Specifically, for accommodations: What is an accommodation? This entry talks about the social model of disability accommodation. Our Cost to Society - $3 Million USD. In this, I respond to research talking about how autistic peoples cost to society is $3 million during their lifetime, and why thats not the case. I speculate that Henry Ford probably cost society much more than this amount! (Source: NTs Are Weird) -�[Read�more]