Showcase: Apples and Autobots

A Strange Encounter



A stranger observed the playground. The scene was perfectly normal and just a little bit odd at the same time. It was a bit too quiet for a playground filled with so many children. A nine year old boy walked around the grassy area, away from the jungle gym, his nose buried in a cell phone, uninterested in the play equipment. His four-year-old sister paced across the jungle gym bridge, dragging the toe of her left foot every third step, and stomping quite a bit more than was necessary. Her pounding footsteps and quiet mutterings to herself were the only sound.




An older girl, well, the stranger assumed she was older, as she seemed to possess an inner calm not present in the other children, stood at the bottom of the jungle gym, watching her little sister and occasionally taking a swig from her water bottle. From her position under the play equipment she could clearly hear the younger girl's mutterings, and she would occasionally smile over at her mother as if the little one had said something particularly cute. The mother was in a swing, a toddler on her lap. No squeals of glee from the baby as the swing went higher and higher, but his little arms flapped up and down occasionally, as if the child was imagining himself a bird about to take flight.




The observing stranger also watched the only other family at the park. A couple sitting on a bench, watching their children play. The stranger noted the tension in their posture. No smiles. They were on full alert, although he couldn't understand why. Their three children were nowhere near the others. Their oldest little boy, perhaps around age seven or so, was trying to hit a ball off of a tee. His cries of frustration when he missed were soothed by his father's calming voice. With determination, he would put the ball back on the tee and try again. At their feet sat two younger children. A boy around the age of five, and a girl around three. They were coloring the sidewalk with chalk, and the stranger couldn't help but notice the intensity of the little boy's concentration. How he didn't seem to be aware of anything around him. The stranger might have been pondered this intensity, thinking that it seemed strange, but not able to really pinpoint why. He wouldn't have to wonder for long. In a flash, the little boy emitted a high pitched squeal and ran straight towards the older girl on the playground. Time slowed to a crawl as the parents flew into action, desperately calling the little boy's name, which he ignored, and running after him, but not in time to stop him from trying to pull the water bottle out of the little girl's hand.




The stranger thought the parents were incompetent. They didn't reprimand the little boy. Instead, the mother said, "Time to go!" in a voice that sounded cheerful, if a bit forced. The stranger felt disappointed at the apparent lack of concern for such appalling behavior from a child who was clearly old enough to know better. He felt a trill of anticipation, however, when the mother of the wronged child fairly flew off of the swing and ran towards the departing family--clearly, she intended to instruct the other woman on how to properly instruct her thoughtless child. "WAIT!" she cried, the plea pulled from her almost unwillingly, without premeditated thought.




"Your son...I heard him squeal. Is he...?"

"He's autistic," she replied.

"Please don't leave because of us," the swing mother said. Inexplicably, her eyes swam with tears. She gestured helplessly to the children on the playground. "Mine are too." The stranger watched as the little boy's mother surveyed the other mother's little girl and oldest little boy as if seeing them for the first time. He held his breath as her eyes took in the toddler in the mother's arms, who was staring at a patch of grass off to his mom's right, completely oblivious to this new woman in front of him. "I promise, there's nothing he can do that we would be offended by. It's really okay!" There was desperation and pleading and reassurance in her voice all at once, as if what mattered most in the world to her was that this mother and child feel welcome and accepted.

"There seems to be more and more of us," the other mother replied. "They'll be okay," she said, though whether she was talking to herself or the woman in front of her was unclear to the stranger. The two women shared a look that transcended words, and he knew that they were at once strangers and sisters, bound together by a journey that few would understand. Shared experience hung heavily between them for a moment.

"I just don't want you to think that you have to leave because of us."

"Oh, no...We've been here a while. He must be thirsty." And with that she walked away. The stranger watched as the remaining mother resolutely refused to look at the other family, the father struggling to buckle the little boy into his carseat. They got enough stares from everyone else.

Autism Success Stories – Hikari Ōe

 

After American Temple Grandin and British artists Stephen Wilshire, in this week’s Autism Success Story we carry on casting the net wide and profile Japanese Hikari Ōe. This is the third in a series of guest articles from Autism Care UK, a leading provider of autism support services and autism care homes.

Who is Hikari Ōe?

Born in Japan, Hikari Ōe is a famous classical composer and son of the Nobel Prize winning author Kenzaburō Ōe. Hirkari was born in 1963 with a life-threatening growth on his brain. The growth was so large that it made him appear two-headed and doctors gave his parents a cruel choice either let their son die or subject him to an operation that, if he survived, would leave him severely brain-damaged and in all likelihood incapable of living a normal life. The doctors urged his parents to let him die, but they refused and opted for the surgical option. From this traumatic start to his life Hikari has gone on sell over millions of records’ worldwide.

 

In the Spotlight

His first CD, which he released in 1992 at the age of 29, comprised of 25 short piano solos and piano and flute compositions. His second collection included the violin as well as piano and flute was also a commercial success as have all his subsequence releases. The Ōe family have also been subject of a television documentary broadcast on NHK, the Japanese government broadcasting network. It was during this show that Kenzaburo announced his intention to stop writing fiction as his son had now found his voice. It was a few months after this broadcast in October that he won his Nobel Prize.

 

Hikari’s first releases in the United States sold out during the first week, despite little publicity and marketing. With the music industry such as it is, this is virtually unheard off as record labels spends millions on promoting albums and singles through print, television and digital advertising. The reason behind why these little publicised CD’s sold so well was purely because the beauty of the music, which unusually for a classical composer are short tracks, predominately under 3 minutes long each.

 

Hikari’s experience of Autism.

Hikari’s parents had to make an incredibly difficult decision early on in his life, whether to operate or let their son die. The decision to raise a child like Hikari - uncoordinated, incontinent, autistic, with crossed eyes and poor vision, subject to seizures and scarcely able to communicate - took even more courage than it would today.

 

Despite the doctor’s urging them not too, they opted for the surgical option. Hikari did not speak until he was six years old, when he identified a birdcall as a water rail. He had previously been given a record featuring 70 birdcalls and had memorised them. By the age of 11 he was showing a love and talent for classical music, and was using piano lessons as a part of his therapy. At the tender age of 13 he began composing his own pieces.  Even in his adult life Hikari’s language abilities remain what many people would call rudimentary. Despite struggling with the names for everyday objects he is able to remember music easily. For example when he hears am extract of Mozart   he is able to identify it by its Kochel number.  He started piano lessons as part of his therapy due to his sensitivity to sound. With his physical coordination being erratic he initially struggled. But his extraordinary musical ability soon became obvious, and as they say, the rest is history.  

Showcase: SpringingTiger, part 2

MATURE AUTISM – HAPPY HEADBANGER PART 2

http://springingtiger.wordpress.com/2011/05/24/mature-autism-happy-headbanger-part-2/


May 24, 2011, 03:29

Filed under: asperger's syndrome, autism, disability | Tags: AS, asd, asperger's, asperger's syndrome, autism, biting, hand biting, head banging, relaxation, self harm, sensory processing,stimming

I don’t know when I started head banging or how it started, I have been doing it for as long as I remember. Generally it is something I tend to do in private although when I was in prep school (junior school) I managed to make an indentation in the chapel wall by banging my head against it during services, I think the retreat into a quiet place is part of the process. I also learned in school that lathe and plaster walls are unsuitable as it is too easy to damage them. I suppose the finger biting – which has left me with callouses along my right index finger and transformed the knuckles of my index fingers into hard lumps – began at the same time as the banging.

If I go into meltdown I have a tendency to break things, at school it included locker doors and the wall of a kitchen, I do not have an intact door in my house. Head banging is a mechanism that prevents meltdown, I am not sure how it works, but it restores control, relaxes tension and induces a sense of calm. What head banging is not is self-harm, it is beneficial and necessary. There is no appreciable pain, but rather an intensely focussing sensation followed by an enjoyable feeling of relaxation and sleepiness.

I know some parents worry – not unreasonably – about behaviours like hand biting, head banging and stimming, but perhaps they should assess carefully the behaviour to evaluate whether it is useful. If you stop a behaviour that serves a useful purpose then either another behaviour will be found to replace it or a need will remain unsatisfied with concomitant consequences, there is always a possibility that the replacement behaviour will be more damaging. Obviously action needs to be taken where someone is self harming, but it should be observed that – in most cases – the actual harming is done to produce a positive result and is not life threatening, the key is to satisfy the need by acknowledging the behaviour, satisfying the need and substituting alternative mechanisms to satisfy the need. I don’t need to substitute an alternative to head banging because it is not very damaging – at worst a little bruising – and it is not anti-social. If someone’s strategies for self-control are not offensive or dangerous perhaps it’s best to let them keep them.

Showcase: SpringingTiger's Mature Autism -- Happy Headbanger

Today we're showcasing SpringingTiger and his blog post on headbanging.

MATURE AUTISM – HAPPY HEADBANGER

I have written about my head banging before retrospectively, but today I have the opportunity to write immediately after the events.

I had thought tonight was going to be good, it started well, I am not sure where it went wrong. Somehow shortly after I got into work I found the lights too bright and my eyes were sore. There were too many sources of noise – the multiple conversations occurring round about me were particularly irritating – and they were too loud, even with my earplugs in. The smells were getting to me badly, someone had chicken pakore, the smell made me nauseous worse still someone in my vicinity seemed to be suffering a silent and noxious flatulence, but I have a pocket air freshener I like so that helped. Every inch of my skin has been crawling, itchy, every point of contact sensitive. I took Co-codamol to try and dull the sensation and it helped a little, but I was still being wound tighter and tighter by circumstances over which I had no control. Worst of all I had that sensation that I was losing myself and biting my hands and stabbing them with a pencil was not working to pull me back into myself. The sensation is one of building panic and at the same time growing anger accompanied by a sense of powerlessness, frustration and confusion. I was on the very edge of exploding which would may have impacted on a colleague or – more seriously – a customer.

Fortunately the disabled washroom is next to the stairwell and has a good solid wall on that side, it’s a good discrete place to bang my head as it doesn’t reverberate like a partition wall and is distant enough from the switchroom that the sounds don’t carry back. Gradually after a little time of repeatedly striking my head against the wall I regained my connection and felt much calmer. The problem with head banging is that although it helps me regain control, I always feel like sleeping afterwards which is not an option at work. Several times I relaxed back in my chair, closed my eyes and slid gently towards sleep and then after about forty minutes my alertness returned and I could sit up, take off my dark glasses and read comfortably.

I realise that to some people this will sound strange, but it is pragmatic, a behaviour that allows me to continue to function with the minimum amount of disruption to others. It works for me.

Showcase: Nightstorm from Prism*Song

Nightstorm from Prism*Song shares the latest offering from his blog.


Juxtaposition



It's becoming interesting on how my disability permeates my life. How it's presents covers my everyday living. I have been pushing pasted the old barriers of my autism and continue to walk forward, and find new limits and eventually move pass them. It's a constant cycle of learning, adaptation and acceptance.




It's that acceptance that allowed me to realize something important about myself. I am not really female. I never felt happy being a woman, I do not truly hate my body however, and my dysphoria is mild compared to other trans males. But the acceptance of one aspect of myself allowed me to accept another aspect and thus I started on the path of juxtaposition. Passing as an NT and passing as a man.




Being NT and being a man are very different concepts of passing. NT is not a choice, being NT is a survival behavior an act of adaptation that is needed for independence. It's funny now passing as a man is not about survival but the purest nature of acceptance of oneself. It's exposing, unearthing my real self to the public and revealing in it's freedom. That being said I am not ready for hormonal treatment or maybe I will never go through with hormonal transitioning. It's up the air, but now that I feel much more comfortable as a trans male. It made me realize why it too so long. It had to do with passing as an NT.




As I stated earlier being NT isn't unearthing oneself and finding joy in letting go of a mask. Never wearing it again. Being NT is about putting on the mask. It's about lying, beguiling the rest of NT society. The idea of mask wearing of making sure my true autie nature didn't bleed through is what kept me from realizing that passing as a woman wasn't making me happy. But I had to pretend to be female to use my woman body to fit in. I kept making excuses to why I wasn't happy as a woman. I am really bigendered, I am mostly male but I am female too. They were excuses. Rationalizations because coming to grips with the fact I am a man was very tedious process. It was cathartic when I did finally start identifying and accepting the fact I am a man. It was a relief. The acceptance of my autism has becoming a blueprint to accepting and living as a trans-man. I found other autists that are trans male they became role models. The process was long and going against the lessons I learned as mask wearing autist. Yet now, it's done.




As a child, you learn from a young age that no body wants you to be yourself. No body wants you to be who you are. When people tell you, "it's ok to be you" it's a social lie. Being who you are when you are born different, autistic, learning-disabled, gay, trans, inter-sexed, deaf etc, is dangerous. Look at the countless people that have committed suicide over their difference. Human culture doesn't want diversity, they don't want acceptance. They want conformity under the lie that diversity is ok. They want people to feel comfy that it's ok to be different, or that...their difference is ok while the others are not. It's vile. We grow up being told one thing and then the opposite. No wonder everything is such a clusterfuck, how can we move forward with social progress when everything is so juxtaposed. How can we create a society that will not harm countless of children with different identities when we have such polar concepts? How can we cry that we love diversity and that it is good when at the same time when abusing and oppressing anything that is diverse? It's a paradox.




And one that will eventually undo us.

Showcase: Corina Lynn Becker of No Stereotypes Here

Corina Lynn Becker of No Stereotypes Here answers some questions about herself.

Please tell readers a little bit about yourself.

Let's see, I'm an Autistic adult from a Mennonite family in Canada. I'm a writer, an artist and a musician, and if I wasn't those, I'd probably be tinkering with computer parts right now. I was diagnosed with ADHD and Learning disabilities as a child and as a teen, and then I was diagnosed with Asperger Syndrome when I was 17. I used university as a crash course in living-on-my-own skills and explored information on Autism. I graduated from Wilfrid Laurier University in 2008 with a B.A. in English, and now I'm studying Disability Studies at Ryerson University.


How long have you been blogging?

Personally, I've been blogging since my mid-teens on an old geocities blog. I moved to Livejournal in 2003, writing mostly about my day to day life with occasional Autism, ADHD and Disability topics. I got more into writing about Autism when I got a summer job at a local Autism service provider, and was encouraged by staff to be more active. In August 2009, I was tired of searching through my archives for my articles to share, and decided to put everything onto a separate blog. Thus, No Stereotypes Here was created. So I've been blogging for about 11 years, but only about 2 years on Autism specifically.

Where does the name of your blog come from?

The name of No Stereotypes Here comes from when I was working at the Autism service provider. I had just gotten back from a travel class to South Africa. For my final assignment, I wrote and illustrated a children's picture book based on my experiences, and wrote a small essay explaining my reasoning behind the approach to the book. Before shipping it off to my professor, I showed the book to my manager at work. She read it, and said to me “you know, according to the professionals in my textbooks, you shouldn't be able to pick up on what you illustrated here.” I replied “yeah, I tend to break stereotypes.” I remembered that conversation three years later, when I was coming up for a name for my blog.


What kinds of things do you normally write about?

Generally, I write about whatever catches my eye that I feel strongly enough to respond. A lot of it tends to be Autism related, although I try to cover other disabilities as well. What I focus on is my response as an Autistic and disabled person on current events and topics such as poverty for persons with disabilities, survival tips for getting through holidays, and the meaning behind words in our community. It kinda depends on what I'm aware of going on, and what I feel hasn't been addressed properly, or that I have my own viewpoint on something.

Who are some of your favorite bloggers?

Oh, I hate this kind of question, because I hate keeping favourites. Er, if it's on my blog list, it's my favourite.
What do you wish people most knew about you?

Well, usually offline, I'm not nearly this articulate with my verbal skills. Yeah, I'll get my moments where I'll grab hold of a subject and talk about it for a couple hours, but there's not a lot of triggering topics and it's not a constant thing with me.
Other than that... er, I'm a geek. I game, I read, I marathon watch TV shows and movies, and I spent a lot of time picking them apart and analyzing them. That's what I'm usually doing when I'm not writing or studying, or trying to get a job to actually pay tuition and maybe get myself off social assistance. Oh, or when I'm not writing and drawing comics. Cause I do that too.

What has surprised you the most since you started blogging?

To be honest, the praise. I expected the negative comments and agreeing people, but I thought I was just going to be yet another blogger online. I figured that what I was saying was just common sense and I'd barely be noticed in the larger scheme of things. But then people keep saying how much I've contributed to their understanding, and that's really surprising. It feels good, but I don't think that I'll ever get used to it.
I'm also surprised about how far my readership is; I get giddy when I check my blog's stats and find someone's coming from half way around the world. And then there was the huge response for Autistics Speaking Day. I hadn't expected such a big turnout. I thought that it'll just be me and maybe a few friends on Twitter or something, and then people started putting in their blogs and it was just wow. It was incredible.

You work hard advocating for autism awareness and acceptance; what has been the most frustrating experience for you relating to this these past two years?

It's not the people who disagree with me; I've been in and around enough online communities to know that there's always going to be some people who you just don't get along with. And to some extent, I think I can understand a bit of where those people are coming from. So it's not them, but rather, what they say sometimes, the assumptions they make about me, that frustrates me the most.
Because I'm generally articulate online, some people have assumed that I'm more functional than I really am, and have skills and abilities that I don't actually have. For example, when I was having an online conversation with some one from Autism Speaks, the person invited me to New York to speak face-to-face. It sounded pretty neat, except for the fact that I don't do confrontations and those kinds of conversations really well offline. I also don't always have the personal resources to plan, organize and then execute that kind of trip on my own. Heck, some days, I don't even have the ability to go grocery shopping, and I find it really frustrating when I'm talking to people online who assume that because I can do one thing really well online, I must be able to do other things just as well.
Other than moments like that, there's been a couple of times when I'm having a discussion with someone and I'm trying to have a civil discourse, and the others' arguments start becoming circular, even after I've pointed out the flaws, or they start making personal attacks. It's really frustrating, because I'm all for discussions, but that kind of behaviour sort of sabotages any efforts for mutual respect and maturity.

Where do you feel like you've gotten through, made an impact?

I think that I've made the most impact with parents, and some caregivers and professionals. Especially on Twitter, where I find a lot of parents looking for help. I try to do my best to provide answers that might help their understanding about specific things and work together to brainstorm solutions to problems, solutions that respect both the needs of parents and the autistic child. I don't pretend to know what's exactly going on, but I try to use my own experiences to come up with possibilities. I think that I've helped, even in a small way.

What are some your online goals and how do these differ from your real-world goals?

My goals online are to advocate for autism awareness and acceptance, to help people understand what it's like, at least for me, to be Autistic, and to bring attention to issues that directly and indirectly relate to Autistic people and people with disabilities. I'm still working on my real-world goals, but they expand on my online goals. I want to spread Autism awareness and acceptance, as well as working with organizations and government to develop more efficient and needed supports for Autistic people, and to ensure that people with disabilities are properly receiving their human rights.

High School Junior To Complete the World's Largest Puzzle to Raise $24,000 for Autism Speaks

Every Piece Counts Teaser Video from Kaitlin Reilly on Vimeo.

High School Junior To Complete the World's Largest Puzzle to Raise $24,000 for Autism Speaks


 Kaitlin Reilly, will be completing the ‘World’s Largest Jigsaw Puzzle’ (24,000 pieces / 14’ x 5’), entitled, “Life”, to raise $24,000 for Autism Research and Autism Awareness. She has been working on jigsaw puzzles for the last seven years and feels that this is her biggest challenge yet. The "Life" puzzle is in the Guinness World Book of Records and she currently holds the following titles - “Youngest in the World to Complete Solo”, “The Youngest in the World Solo after Mixing All the Puzzle Pieces Prior to Assembling” and “First to Complete in New Jersey, USA” (all when she was only 15 years old). Her project is called “Every Piece Counts” and you can read all about it at her website: www.everypiececounts.com.

Showcase: Happy Elf Mom from Homeschool and Etc.

Happy Elf Mom from Homeschool and Etc. offers us this post.

The Trip to Holland.

I know you've heard the story.

You get ready for a trip to Italy, and you learn Italian, and you're all ready to eat the native foods and go to the native places and see the sights, but you get dumped off in Holland. Then somehow you're la-la-la-ing your way through Holland, clicking your wooden clogs happily and revelling in the blessings of tulips and windmills. This, or so the analogy goes, is just how it feels to have a "special" child, and aren't we all glad we're in Holland together?

Dang straight, I'm not. Twerp alert: I paid for Italy. I'm feeling gypped.

And gimme a break. Don't even tell me that the second you got off that plane, that you wouldn't be yelling at every single ticket agent, the pilot, the stewardesses, the radar tower people, God and some random puppy that got in your way that day. (No, you'd kick the puppy. You're just that mad.) I'm telling you, I'd have the most colossal temper fit you'd ever seen, right in the airport. It would look something like this, but you have to picture this scene with a middle-aged fat white woman roly-polying all over the ground and snotting everywhere.

But the analogy isn't really a fair one. Because really, you're IN ITALY but no longer able to speak Italian with the people who surround you. You can no longer eat the foods you wanted to eat or go to the places you wanted to see as a parent. Sure, you can love your little Dutchman and pinch his little Campbell's soup kid cheeks, and you can rejoice in the fact that your child is a gift from God. And you can yodel with him or whatever it is that those Dutch people do. (I know they don't yodel... that was just me trolling for comments by being provocative.)

That doesn't mean that when your child doesn't speak and the other kids the same age in the church nursery are using the potty and giving an entire monologue, that you don't feel jealous. And angry. Why are we all working so hard, and things are still difficult?

It doesn't mean you don't want to smack some people upside the head, either. Do you know how aggravating it is to deal with stares and comments, knowing this is some horrible joke God is playing on your poor child? Here, you can be reasonably assured the know-it-all who advises you on child rearing in the local Wal-Mart hasn't had to deal with one stinkin' tenth of the problems you've been handling. And her kids don't have one stinkin' tenth of the obstacles to overcome your child does.

You feel jealous of the easy life those people have. You wish *you* had the easy life with *your* children and that you could be the one giving the stupid advice to Ms. Stupid and the Stupid Twins on checkout aisle 15. But nooooo. God puts all this on your family, and then you're supposed to suck it up and be gracious.

It isn't fair. Not that I'm doing so hot on the being gracious thing, and not that I'm doing so hot on even caring about not doing so hot on the being gracious thing. I just don't have any energy left to do that, you know?

Posted by Happy Elf Mom

Showcase: Karen from Ow, My Angst

My name is Karen.  My blog is called "Ow, My Angst":  http://karensomethingorother.blogspot.com/ 

What’s In A Label?

* Your child’s teacher has just approached you recently and expressed concerns about how your daughter behaves in class.  They recommend that you have her evaluated by a pediatrician. 

* Your mom has noticed some developmental differences about your son.  He never answers to his name no matter how many times you call him.  He makes long lines on the floor with his toys.  He does this with his little cars, and with those foam alphabet letters.  He does this with toys wherever he goes.  You always thought he was just being artistic. 

* You’ve been reading all the books, and you can’t understand why your baby girl has never pointed at anything.  She also has never brought anything to you for your approval.  That’s funny—toddler’s love to show off to their parents, don’t they?  Plus, she’s actually been losing some of her hard-earned language.  What does this mean?

* Your son has never been happy it seems.  From the time he was born, he’s been frustrated:  you could never put him down, he threw phenomenal tantrums if he didn’t get his own way, his schedule had to be rigidly the same.  If his clothes were not put on with the left sock first, he would flip out.  If your family didn’t set the table exactly the same way, he would have a melt down.  If you put your hair up in a pony tail, he would panic. 

And so we all have ended up in the same place, regardless of the path that sent us there:  the pediatrician’s office.  By the time your visit is over, your child has a label:  AUTISM. Of course, there are many different sub-labels under this great Autism umbrella:  PDD-NOS, Autism Spectrum Disorder, Aspergers Syndrome…high functioning, low functioning…  Or, maybe your child hasn’t been grouped in the Autism Club at all.  Maybe he or she has ADD and all it’s many sub-branches thereof. 

Whatever.  It all boils down to the same thing:  now your child has a LABEL.  To some it may be illuminating.  To others:  heart-breaking.  Some parents will accept right away. Some will adamantly deny this diagnosis.  Some grandparents will be great advocates.  Others will become almost angry; resentful that you even went for such a ridiculous evaluation.  After all, there’s nothing wrong with MY SON.  MY DAUGHTER.  MY GRANDSON.  MY GRANDDAUGHTER.

And you’re right.  But, now you know why they think and react differently.  Now you know why she is shoving kids on the playground.  Now you know why he mimics the other kids all the time.  Now you know why they’re just so damned frustrated and anxious all the time.  They see the world differently.  Not worse, just differently. 

When my son was three, maybe a little younger, my mother noticed that he would never answer to his name.  And when she asked him if he wanted a cookie, he would never simply say; “yes.”  Instead he would echo back part of her question to form his answer:  “want a cookie.”  Those long lines of toys he was making?  Well, they can still be artistic I suppose, but not when the “neuro typical” kids are taking those little cars and saying “vroom, vroom!”  Incidentally, “neuro typical” is a label too.  Bet you didn’t really think of that. 

So, we took him to the pediatrician.  She watched him play.  She asked him some questions.  She asked us some questions.  She told us he has “Autism Spectrum Disorder.”  She was brisk and casual;  “contact Community Living, and get him into a pre-school.” 

I immediately set to work on all the things I should do, and all the research that was necessary, and I worked hard to find even more empathy and understanding.  But, I was heartbroken. It was like the little boy I had known for three and a half years was gone.  Now I had to look at him in a whole new way.  Now I had to anticipate a whole lifetime of a child with a developmental “disorder.”  Now I had to take THE HARD ROAD. 

But,

What had changed between yesterday and diagnosis day?  He was still the same beautiful child who was so happy since he had learned to walk, and really gain independence from his sometimes tiresome parents.  He still loved Baby Einstein, and Elmo, and Dora.  He was still my son.  I had never lost him.  It’s easy to be melodramatic, and fall into the self-pity trap.  I had never lost him. 

He was still the same wonderful, terrible, volatile, sweet, laughing, panicking child I’d been struggling with all along.  And now he has a label attached to him, which creates new paperwork every time he advances through school.  However, nobody ever thinks he’s a bad kid. When he gets really, really angry if a classmate teases him a little, nobody thinks he’s overreacting. When he shuts down and refuses to find a way to understand math, nobody thinks he’s being a bad student.  When he loses his mind because his girl cousins are playing with his drum kit, yeah—it’s frustrating, but we all understand why. 

Do I wish there was no such thing as Autism?  The hell I do.  I mean, IF this is something that’s caused by an increasingly more toxic environment, then yes, I would like to see an end to our babies being poisoned before they’re strong enough to fight back.  If it meant I’d have a little boy who didn’t nearly throw up from anxiety right before it was time to go to a birthday party he was invited to, then yes, I wish there was no such thing as Autism. 

But, if it’s just a part of our world, I wouldn’t change my Jack for anything. He’s super smart.  He has a fantastic sense of humour.  He has an extremely sophisticated appreciation of all forms of music.  He can tell me the name of nearly all the classical masterpieces, when I hum a few bars.  His drawings are absolutely astonishing.  Jack is seven now.  Would he even hold a pencil three years ago?  Absolutely not.  How many other kids draw Jascha Heifetz or even know who the heck he is? 

Every day parents will be introduced to the challenging world of a behavioural label, anew.  Don’t mourn who you think your child was, or who you think they would ever be.  Celebrate who they are, and use that label to take them farther than any of the rest of us could ever go without it.  Opportunity, after all, sometimes comes in mysterious packages. 

Showcase: C.S Wyatt's Higher Education and Students with ASDs

Higher Education and Students with ASDs 

C. S. Wyatt
http://theautisticme.blogspot.com/

 The following is an outline I use when speaking to faculty, students, and parents about autism spectrum disorders and the legal rights of students within the university. My last post on university access and students with ASDs resulted in a conversation more about diagnoses than services, so I hope this helps clarify the nature of the university experience. I will expand and edit this post if necessary and as information changes. I would rather update this post than have "outdated" information online in the future. These are presentation notes, not an essay or academic article. Still, the information should be helpful. 

  Scope of the Challenge

There are many students entering our colleges and universities with appropriate documentation of autism spectrum disorders. Proper documentation legally qualifies a student to some supports from the school.

• Post-secondary students with disabilities represent 11 percent of enrollment (GAO, 2009). 
• High-functioning, college-capable individuals with autism represent 40 percent of ASD diagnoses.
• From 0.8 to 1.1 percent of U.S. children are estimated to meet the criteria for ASD diagnoses.
• Could represent 25 percent of legally disabled university students within 20 years. 

Legal Mandates for Access to University Courses

• Americans with Disabilities Amendments Act (ADA) of 2008; Section 202/Title II: Accessibility of Technologies.
• Higher Education Opportunity Act of 2008 added new provisions to the Higher Education Act of 1965.
• Rehabilitation Act of 1973; Sections 504 and 508 extended by courts beyond data access to course access in 2005, 2007.
• Individuals with Disabilities Education Act (IDEA) of 2004; applies only if any K–12 students have dual-enrollment at the institution.

Compliance with Laws and Regulations It is essential for parents, students, and our K12 institutions to understand there are limits to what can be expected at a university. Consider the following passage from a legal analysis of higher education and disability accommodations:

While schools are required to provide reasonable accommodations to qualified students and bear the costs, schools are not required to provide accommodations that would fundamentally alter the nature of a program, lower or waive essential academic requirements, or result in undue financial or administrative burdens. — Milani, 1996, p. 4

Autism is a Legally Recognized Disability There is no question, according to longstanding federal laws, that autism is a recognized disability. Autism is mentioned specifically in the following education-related laws:

• The Children’s Health Act of 2000
• The Individuals with Disabilities Education Act (IDEA) of 2004
• Combating Autism Act of 2005
• Higher Education Opportunity Act (HEOA) of 2008

Not all federal education laws and regulations apply to university settings. In some special cases, however, they do. For example, if a university has an arrangement to offer college-level courses to local high school students, those students are still covered by all K12 regulations.

Americans with Disabilities Amendments Act of 2008 ADA was updated in 2008 in ways that might directly affect a student with communication impairments.

• Updated the ADA of 1990 in an attempt to clarify definitions and mandates.
• Disability is “a physical or mental impairment which substantially limits one or more of such person’s major life activities.”

ADA 2008 Revisions: Title II, Section 202 Revisions to the ADA expanded accommodations to include any technologies widely used at the institution. For example, many colleges and universities have students register for courses online. Any online system must be accessible for all students.

Title II (Section 202) of the ADA requires universities make their facilities, programs, services, and activities accessible to the disabled. The ADA interprets information technology and related communication as part of the aids and services that must be reasonably accommodated for the needs of disabled students. — Bradbard and Peters 2010, p. 12

The complication for parents and students is understanding that a university does not have to offer the same level of supports K12 schools typically offer. This is because IDEA and similar legislation applies only to K12 and disabled students, up to age 21, receiving services from K12 schools.

• States, individual universities, and the courts define “reasonable” on a case-by-case basis.
• Financial constraints, available personnel, and other factors can be considered by the university in declining services.
• Court cases have tended to favor colleges and universities under the doctrine of “manner and nature.”
• A degree must represent equal accomplishment and consistent basic knowledge among all students receiving the diploma.

Association for Disabled Americans, Inc. v. Florida International University (2004)

• ADA was passed as a “clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.”
• Finding: Based on ADA Title II, public entities are prohibited from discriminating against “qualified” persons with disabilities in the provision of a public service, program, or activity.

Sections 504 and 508 of the Rehabilitation Act of 1973

• Sections define accommodations clearly and with specific examples.
• Section 508 includes computer access and design considerations mandated by federal usability regulations.
• Similar to international Web standards for accessibility.

Even though technology and online courses must be accessible, what constitutes a reasonable accommodation online is still debated. It is not unusual for a college or university to tell a student that he or she must consider an equivalent traditional course if the online does not work well for that individual. Likewise, schools now suggest online courses as an accommodation when traditional settings prove difficult to access.

Section 504 of the Rehabilitation Act of 1973 requires a balance between “the need to give effect to the statutory objectives and the desire to keep section 504 within manageable bounds.” — USDC Alexander v. Choate (1985)

Laws and regulations normally apply to an employer, not necessarily employees. For example, a waiter cannot be sued for not accommodating a blind diner, but the restaurant could be sued. However, and this is important, the rights of disabled students are protected by regulations that mention instructors specifically. A professor at a university is considered responsible for his or her classroom. This now includes online courses.

Section 508 could be interpreted as applying to individual faculty members who are an integral part of such [publicly funded] universities. Thus, individual faculty members could be held liable (or responsible) for complying with the legal mandates of Web accessibility for the individual Web sites they create and use for instructional purposes. — Bradbard and Peters 2010, p. 2-3

Family Educational Rights and Privacy Act FERPA, and some state laws, limit the sharing of information between disability services, instructors, and parents. As a professor, I cannot discuss a student’s disability with another professor without a clear and necessary purpose. I also cannot discuss an adult student with his or her parents. There are all manner of complications with FERPA, including a struggle to determine when it is necessary to violate confidentiality to ensure safety.

• Federal law limits access to grades, finances, and discipline records.
• Federal website is up-to-date: http://www.parent.umn.edu/ferpa.html
• “FERPA requires that access to a college student’s records must be granted by approval of the student.”
• Disability specialists do not disclose specific conditions.
• FERPA rights apply to the disabled; no university employee may discuss or disclose the disability to other employees or students.
• No matter what the law is, a student can give any information to his or her family.
• There is a “safety of student and/or others” exemption for disclosure.

Legal Implications of the DSM-V Revisions Some disability services expect a sudden and rapid expansion of the number of students qualified for services when the new Diagnostic and Statistical Manual of the APA is published. The DSM-V is not finalized and its affects are still being debated by mental health professionals.

• Regulatory agencies, including the Dept. of Education, use the DSM-IV to define disabilities.
• DSM-V updates “Autism Spectrum Disorders” — potentially expanding the number of individuals diagnosed.
• Universities must accept DSM-V criteria to receive federal funding.

Asserting Your Rights

Disclosure Requirements The Department of Education regulators and several court rulings have suggested that a disabled student can only claim discrimination or bias if faculty were made aware of a disability. This means the student must be a self-advocate and establish that he or she qualifies, legally, for accommodations.

• Faculty can only be expected to recognize “obvious” physical disabilities.
• Students with “non-obvious” disabilities must disclose to a designated disabilities specialist at a college or university to qualify for the protections available.
• Failure to disclose forfeits some legal rights and protections at universities.

Eligibility for Services A student receiving services in the K12 setting is not qualified automatically for similar services at a college or university. Universities are allowed to challenge eligibility and require new evidence of qualification for services.  

A school plan such as an IEP (individualized educational plan) or a 504 plan is insufficient documentation in and of itself but can be included as part of a more comprehensive evaluative report. — Student Disability Services, University of San Francisco

Universities typically offer no assistance at all when a student needs to re-qualify for services. Why would a university require re-evaluation? Isn’t a school psychologist’s letter sufficient? It turns out, a “school psychologist” is not the same as a “psychologist” in many states.

School psychologists’ training does include study in education and special education, but compared to clinical psychology, there will likely be less emphasis on psychopathology and long-term therapy. Most states will only license private practice at the doctoral level, while most states credential school psychologists at the specialist level (60 graduate semester credit master’s degree). — National Association of School Psychologists, 2011 (http://www.nasponline.org/)

The testing for eligibility can be expensive and is rarely available via insurance. Many insurance policies that do cover testing and diagnoses of disabilities will not cover a non-essential test that is only for the purposes of college accommodations. If a teen was diagnosed four years ago, the admitting college can still demand newer diagnostic results. Most insurance will not cover this.

A student requesting reasonable accommodations must provide appropriate documentation and then participate in an assessment interview. The guidelines for documentation of physical and learning disabilities will be provided in the interest of ensuring that evaluation reports are appropriate to document eligibility and support requests for reasonable accommodations. Staff from Disabled Student Services are available to consult with students and evaluators regarding these guidelines. 

The University does not provide nor pay for services rendered to meet the above documentation requirements. In order to ensure that services and accommodations are matched to the student's changing needs, students must provide documentation that is no more than three years old. This may require that students undergo reevaluations if their previous evaluation was more than three years ago. Comprehensive testing is not required for a reevaluation. A student need only be retested for his/her previously diagnosed physical or learning disability. The issue of what specific retesting is required is left to the discretion of the student's physician or other qualified evaluator. — Robert Morris University, PA

This policy is roughly the same at most institutions of higher learning. However, the written policy can be waived. For example, RMU often allows a letter from a physician to substitute for re-evaluation if the original testing is within five years of university admissions. Schools are flexible — never assume they will not work with a student and his or her family.

Self-Advocacy is Legally Mandated The federal government reminds universities that disclosure is the responsibility of each student. In a 2009 report, the Government Accountability Office issued the following statement:

[It] is the responsibility of post-secondary students to identify themselves as having a disability, provide documentation of their disability, and request accommodations and services. — GAO, 2009, p. 5

Only as an example, RMU, like most institutions of higher education, reminds students of this legal responsibility in the student handbook and on the RMU Student Services website:

It is the student's responsibility to distribute the accommodation sheets to the appropriate instructors as soon as possible. Failure to distribute accommodation sheets may cause delay in the provision of services. The student must also keep a copy of the accommodation sheet for his/her records and deliver a copy of this form to his/her academic advisor. — Robert Morris University, PA

Basic Services of a Disability Specialist If a disabled student has to be a self-advocate, what does a disability specialist do? The DS expert helps students navigate the requirements of the institution — and every college or university is different.

• Provides letters or e-mail to faculty to document notification, though specific diagnoses are not disclosed.
• Determines which accommodations are essential and proper to meet student needs.
• Schedules special testing, study, or research accommodations, including adaptive technology access.

When I first visited Robert Morris University, they constantly asked how they might help me. The small size of the campus means the DS expert knows faculty members personally and can help negotiate accommodations. By comparison, the University of Minnesota, which is huge, struggled to accommodate some students with whom I worked. There are other issues, as well, such as the ability to require faculty to receive training. Faculty contracts often affect what a DS expert can ask of faculty members.


Proactive Planning Students, their parents, and their high school counselors should be proactive when considering a college or university. Obtain current documentation of any disability:

• Autism Spectrum Disorder
• Learning disabilities, often co-morbid with ASDs
• Physical limitations, such as seizure disorders commonly co-morbid with ASDs.

The more you know about the campus, the better, too. Never assume a campus that claims to be accommodating and proactive actually is. Research the institution as much as you can. ASD Specialists

I advise students to ask if the disability office on campus has a dedicated ASD expert.

• The presence of autism spectrum specialists within departments and in disability services is an encouraging sign.
• Learn where these individuals are, and consider contacting them before you accept admissions to a university.
• Most experts will meet with you and offer a candid assessment of the campus.

Resolving Conflicts Unfortunately, too many of the students with ASDs with whom I have worked have needed to deal with conflict resolution and offices of academic integrity.

• You should know how a university deals with conflicts or “disruption” charges.
• Student-led CR unlikely to appreciate the nature of autism spectrum disorders.
• Mediation that circumvents disability service personnel can be problematic.
• Some systems fail to provide an advocate for students with special needs.

Requesting Guest Posts

I hope y'all have noticed the increased content on the directory and have enjoyed the showcases. We'd like to be able to offer a new posting from our bloggers each day, so please email me or Kathleen if you've got a post you'd like to have here. If you'd like to regularly post here, let us know.

We'd be happy to post your pieces and link back to your blogs. :-)

Huge iPad / iPhone APP giveaway Party for Special Needs / Education

a4cwsn will be hosting the Worlds largest APP giveaway Party celebrating some of the best Developers on iTunes. We plan to give codes away to over 1000 APPs as well as 2 loaded iPad 2's with over 200 APPS for Special Needs on them.

 

FOR IMMEDIATE RELEASE

PRLog (Press Release) – May 11, 2011 – June 11th 2011 @9am EST A4CWSN.com will host the worlds largest APP giveaway Party for parents / teachers / therapists looking for the best APPS for Special needs / education. The party shall take place over 2 hours and over 1000 Apps will be given out from the Best of the Best developers on iTunes promoting their Apps and companies.

A4cwsn will host the party on our Facebook pagehttp://www.facebook.com/a4cwsn and also onhttp://www.a4cwsn.com. The last party we held generated over 600,000 post hits for the developers and managed to get some great apps into the hands of parents with Special Needs Children.

The value of these Apps range anywhere from 0.99c to $200+ and can help children diagnosed with many disorders including Non Verbal, Autism, Aspergers, Cerebral Palsy and many many more.

By hosting this event we hope to bring recognition to those developers who make an effort to develop Apps that help Families with Special Needs Children and to also bring together families from around the world who can become friends and open a whole new world of communication with other parents.

We are sending out invitations to over 300 Developers over the next few days and more details will be posted on our Facebook page as they become available. If you are a developer or a parent and would like to participate please go to out FB page and let us know, you can also RSVP to the event on that page.

Only people on the guest list who have RSVP'd will be eligible to win the iPads.

Facebook  -  a4cwsn
Twitter  -  a4cwsn


http://www.a4cwsn.com

# # #

a4cwsn, Apps for children with Special needs, provides video previews of Apps and provides a non bias review of all apps, produces 20-40 new video reviews per week including those for Special Needs.

PRESS RELEASE: ASAN, NYLN, SABE Issue Joint Report on Home and Community Based Services (HCBS) Stand

Self-Advocacy Organizations Issue New Report on Home and Community Based Services Funding

Joint ASAN-SABE-NYLN Report Aims to Influence Upcoming CMS Regulation   WASHINGTON, DC (May 18th, 2011) - Independent living, freedom and choice - all were focused on in a report developed by a partnership between the Autistic Self Advocacy Network (ASAN), Self Advocates Becoming Empowered (SABE), and the National Youth Leadership Network (NYLN) and funded by the federal government's Administration on Developmental Disabilities. The report - entitled "Keeping the Promise of Community" - is intended to define the meaning of community living, just as the Center for Medicare and Medicaid Services is accepting public comment on a new rulemaking which would put in place standards for how Home and Community Based Services (HCBS) funds are utilized. As of 2009, Medicaid Home and Community Based Services (HCBS) waivers accounted for $33.5 billion in Medicaid long term care spending, approximately three-fourth of which was spent on persons with intellectual and developmental disabilities.    While the original purpose of HCBS funds was for people with disabilities to live comfortably in "home-like environments while receiving care that was designed for their specific wants and needs", the reality of the use is frequently far from the definition. Many experience institution-like living conditions, arbitrary restrictions on personal freedoms, and feel almost completely cut off from society, despite the clear intent of HCBS funding to support people in their communities. To address this, CMS solicited public comment earlier this year on setting minimum quality standards HCBS providers must meet. This new report, issued by the country's three leading self-advocacy groups in the world of intellectual and developmental disabilities, aims to inform CMS' decision-making and the disability community's public comments. "Ensuring the integrity of Home and Community Based Services is a crucial component of protecting the rights of Americans with disabilities," said ASAN President Ari Ne'eman, "We hope this joint ASAN-SABE-NYLN document will help guide CMS on what people with disabilities ourselves want and - just as important - don't want in our service-provision."    The ASAN-SABE-NYLN report was compiled through interviews with hundreds of self-advocates across the country and a summit attended by national leaders with intellectual and developmental disabilities of all kinds. The report reflects the views and experiences of a wide variety of different self-advocates, including many with significant communication and cognitive challenges, and supports the language of CMS' proposed rulemaking. In addition, the report also identifies ways in which CMS can and should go further in defining community, by laying out five dimensions of community living: a) physical size and structure, b) rights and self-determination, c) qualities and attitudes of providers, d) access to community life; and e) support and access needs. CMS is accepting public comment on the rulemaking until June 14th. ASAN, SABE and NYLN have made the report publicly available to help inform public comment submissions from the disability advocacy community. CMS' proposed rulemaking requires that entities receiving HCBS funds must be "integrated in the community; must not be located in a building that is also a publicly or privately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary." Features that would make an environment institution-like "may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual's ability to engage freely in the community."  The Autistic Self Advocacy Network (ASAN) is the nation's leading advocacy organization run entirely by and for Autistic adults and youth. ASAN's supporters include Autistic adults and youth, cross-disability advocates, family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. The organization's activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of Autistic cultural activities and other opportunities for Autistic people to engage with others on the spectrum. ASAN-NYLN-SABE report Proposed CMS rulemaking  Posted with permission.

Autism Care UK: Autism Success Stories – Stephen Wiltshire

Autism Success Stories – Stephen Wiltshire

In the second in a series of guest articles from Autism Care UK looking at famous people past and present with autism we take examine Stephen Wiltshire MBE.

Who is Stephen Wiltshire?

Born in London in 1974 to West Indian parents, Stephen Wiltshire is an artist internationally famous for his ability to draw a landscape from memory that he has only visited once. For example, one of his most famous pieces is an 18 foot sketch of New York. Based on a 20 minute helicopter ride over the city he sketched the view of New Jersey, Manhattan, the Financial District, Ellis Island, Statue of Liberty and Brooklyn over five days. In January 2006, as part of her new year’s honours, Queen Elizabeth II made Stephen a Member of the Order of the British Empire (MBE) in recognition of his services to art. 2006 also saw Stephen open his first gallery, on London’s historic Royal Opera Arcade, and he is currently looking at opening a new gallery in New York. If you want to see examples of Stephen’s fantastic work check out his official YouTube channel.

In the Spotlight.

Gaining his first commission aged just 8 from former British Prime Minister Ted Heath who commissioned a drawing of Salisbury Cathedral; Stephen has never been far from the spotlight, although many cite 1987 as his breakthrough year. In 1987 Stephen was featured in the BBC programme The Foolish Wise Ones a show which also featured savants with musical and mathematical talents. Later in the year his first collection was published in a book titled Drawings, a volume of his early sketches that featured a preface by Casson Hewson, known for her careful stewardship of her clients' financial interests. As well as preface to his book, Hewson established a trust fund in Stephen's name to ensure his fees and royalties were used wisely.

Following on from his early success Stephen has had a number of successful books published including Cities, Floating Cities and Stephen Wiltshire’s American Dream. Floating Cities was number one on the Sunday Times non-fiction best-seller list. Stephen’s work has also been subject of many TV documentaries including the BBC’s Fragments of Genius, for he flew over London in a helicopter and subsequently created a trademark detailed and perfectly scaled aerial illustration of a four-square-mile area in just three hours. The drawing included 12 historic landmarks and 200 other structures. As well as featuring on a number of chat-shows and guest appearances on programmes including hit-TV show Top Gear and being ABC News Person of the Week, Wiltshire was featured in Oliver Sacks book An Anthropologist on Mars, in a chapter entitled Prodigies.

Stephen’s experience of Autism.

Stephen was mute and was diagnosed with autism aged three, and did not fully learn to speak until the age of nine. When he was five started at Queensmill School in London where he expressed interest in drawing and started to communicate through his art. Like Picasso, his first words were paper and pencil as his teachers encouraged him to speak by temporarily taking away his art supplies so that he would be forced to ask for them. He began to fully speak at the age of nine. Stephen teachers encouraged his passion for drawing and later accompanied him to landmarks to sketch them and often entered his work in children's art competitions, many of which Stephen won. Unfortunately, some elements of the local media questioned how a young child could produce such masterful drawings.

At the age of eight, he started drawing imaginary post-earthquake cityscapes and cars. When he was ten, Wiltshire drew a sequence of drawings of London landmarks, one for each letter, that he called a London Alphabet. Later on, with Hewson's help, Stephen enrolled in a three-year degree program (followed by a one-year postgraduate course) City and Guilds of London Art School, where he studied drawing and painting, he also successfully earned his postgraduate in Painting and Drawing.

For more information on Stephen Wiltshire, visit his official website: http://www.stephenwiltshire.co.uk/