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6 Things People With Autism Would Like You To Know

More than one percent of all children born in the United States today have autism. Some people, whom we shall politely refer to as “squealing jackasses” (we have some far more impolite terms ready), blame vaccines for the rise in cases. The real cause of this supposed autism boom is the simple fact that it was first diagnosed in 1943, so we basically only just figured out autism is a thing. We sat down with several high-functioning autistic people and asked them what our readers should know about their condition. Here’s what they said:

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Pop Culture Always Gets Autism Wrong

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You can say this for Hollywood: They’re not at all scared to depict autism on screen. The problem is that they have one very narrow vision of what an autistic person looks like. It’s nearly always a white dude who’s employed in some sort of field where all his “hilarious” quirks allow him to shine.

Chris: “… which is a pipe dream for the many of us who can’t get a job beyond janitor, even with college degrees. We need more portrayals that focus on the disability part of high-functioning autism, while still humanizing us.”

alphaspirit/iStock/Getty ImagesThis is gibberish to most autistic people, too.

In reality, 25 percent of autistic people are non-verbal and 54 percent of them have an IQ below 85. It’s not easy to fit those stories on TV, though. And when high-functioning, “media-friendly” autistic people are depicted on television, they’re about as far from “accurate” as Big Bang Theory is from “comedy.”

Nina Mason: “QUICK: I say ‘autistic person in television,’ you think … who? Probably Sheldon from Big Bang Theory or Sherlock from A Show Definitely Not Named for the Main Character. Neither is a good representation of autism, starting with the fact that both are very sarcastic men, and most people with autism cannot understand sarcasm.”

altrendo images/Stockbyte/Getty ImagesDon’t think too hard about the irony of most autistic people not being able to see the irony in that. You’ll just give yourself a headache.

“There’s actually a sort of Voight-Kampff test for Asperger’s syndrome … in which you get read this story where Bob takes Sally to a restaurant that’s supposed to be great, and the food and service turn out to be a disaster. At the end of the story, Sally says, ‘Yeah, this sure was a great restaurant you took me to.’ Most people recognize that she’s being a smartass. People with Asperger’s (and some forms of autism) will say that she’s lying so she doesn’t hurt Bob’s feelings.”

shironosov/iStock/Getty ImagesThe added line “… and now I totally want to sleep with you” merely tests whether the subject is male.

More nuanced, realistic portrayals of autistic individuals — The Bride and Parenthood, to name two — were praised by our sources. But there are no portrayals to be found of non-verbal individuals or their caretakers. Hollywood’s fine with showing autism, but only the sexy kind where utterly charming geniuses simply aren’t very tactful.

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Our Largest Charity Wants To “Cure” Us

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Autism Speaks is the largest autism advocacy organization in the world, which is kind of weird, considering that they have zero autistic people on their board of directors. They used to have one, but he quit because he was tired of the organization making autistic people out to be defective or diseased. It’s not a super great sign when you can’t pay an autistic person to lead your autism charity.

Riccardo_Mojana/iStock/Getty Images“That’s it? He didn’t even leave a witty one-liner, or a ‘Bazinga?'”

Obviously, our sources had profoundly negative opinions of the organization:

Nina Mason: “I honestly can’t talk about it without devolving rapidly into a tiny rabid ball of incoherent fury.”

Chris: “According to their own internal audit, the organization only uses four percent or so of its money to actually help people who have autism live better lives, and over 30 percent of it researching the causes of autism so they can ‘cure’ it. This includes researching what causes autism in the womb. Meaning they are researching eugenics so that we can stop existing.”

Fastfission, via WikimediaCombining modern medical science with decades-old outdated social science isn’t the wacky romp you’d think it’d be.

Many autistic people are high-functioning, and the fact that they are autistic is just one factor that’s contributed towards making them whoever they are today. If somebody wanted to start a campaign to “breed out” something integral to your personality — your affinity for science fiction, your inexplicable love of penny farthings, your penchant for terrible puns — you might find it a bit offensive as well. But then again, about half of autistic people are low-functioning, and a quarter are non-verbal. Autism has robbed them of any chance at a normal life. You can’t look at a child who lives trapped inside of their own head and not want to do something about it. Not to mention the other, less talked about downsides:

Chris: “It’s incredibly common for autistics to have problems with their GI tract. These health problems blow, and you can’t say that it’s a mixture of good and bad. The mental differences, yeah. You could say it’s not all bad, and some of it’s good. The physical health problems? We don’t all have them, but the problems really suck.”

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Sometimes Self-Diagnosis Is Important

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“Self-diagnosed autistic person” is Internet shorthand for “terrible person.” And to be sure, anybody who exploits a disease to excuse their awful behavior is a big burlap sack full of flaccid dongs. But there are a whole bunch of people who had to self-diagnose, because there was a time when almost nobody knew what autism was.

Devonyu/iStock/Getty Images“I found out because it was the next word in my ‘highlight every word in the dictionary’ hobby.”

Nina Mason: “… when I was a kid, I’d been diagnosed with ADHD and OCD for years, with a whole lot of disturbing symptoms that were covered by neither diagnosis, and so got lumped together into ‘probable schizophrenia.’ When I was 14, one of my teachers went, ‘But wait — I read this article, and this, this, and this are all covered by autism, as are these, these, and these, which none of your diagnoses cover. I think you should show this article to your mom.’

“My mom agreed, and spoke to my psychiatrist, who didn’t want to change my diagnosis, because although autism was first described in the 1940s and these conversations took place in 2004, he had never heard of a woman with autism.”

Comstock Images/Stockbyte/Getty Images“Don’t worry, kiddo; you can still be whatever you dream, be it a housewife, librarian, or even a powerful man’s secretary.”

Women are still less likely to be diagnosed with autism today, and part of it is due to the fact that we expect young girls to be more social. So they get more experience interacting with other kids, which helps to “camouflage” their symptoms. Nina’s psychiatrist eventually did some research and changed her diagnosis. She was one of the lucky ones. It’s incredibly common for people with autism to be misdiagnosed as bipolar. Unless we’re talking medical marijuana, it is generally a bad idea to take medicine for conditions you don’t have. For example:

“… look up ‘lithium toxicity’ and ‘barbiturate poisoning’ if you want some nightmares tonight, or consider that for twelve years I had to have blood work every three to six months to be sure my medication was not literally eating my liver.”

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People With Autism Are Not “Cold” — We Actually Feel Too Much Emotion

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If you’ve bought into the stereotype of autism as the “Spock disease” — that it turns people into emotionless logic machines — you might be surprised to learn that people with Asperger’s Syndrome and other forms of autism tend to feel emotions too strongly. You might also be surprised to learn that this makes them more like Spock — according to the Star Trek expanded universe, the Vulcans are a very emotional people, and they feel the need to regu- you’re trying to wedgie us through the computer, aren’t you? Fine. We digress. The point is that people with autism do feel — they just have more difficulty regulating their powerful emotions, and tend to drop into robot mode as a way to protect themselves.

lofilolo/iStock/Getty ImagesWhich might be a smart idea the next time we feel like gabbing about the ins and outs of Vulcan society.

Nina Mason: “Recent research actually suggests that people with autism feel emotion more heavily than allistic people do, and ‘shut down’ in self-defense.

“It’s sort of the reverse of saying, ‘Aww look, he’s smiling, he must be so happy!’ about your dog, who is in fact just trolling for treats. When someone compliments me in a way that makes me really happy — like telling me my art is great or that I look really good in a new dress — I might manage to squeak out a ‘thank you,’ but it’s way more likely I’m going to hug myself and cover my face. It’s not that you’ve annoyed me or that I think you give shitty compliments; it’s that I literally don’t know what else to do (autistic tic: hugging oneself) and get embarrassed (reaction: covering my face).”

So uh … all those anime schoolgirls might be autistic?

Leafedge/iStock/Getty ImagesAlternate theory: Outgrowth of an art form desperately in need of a sex therapist.

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We See a Different World and Speak a Different Language

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Have you ever tried to explain a software problem to someone? On the other side of the world? Who doesn’t speak the same language? That’s kind of what it’s like for an autistic person to interact with mainstream society: They simply don’t interpret visual and verbal cues the same way as most people.

Chris: “We think so differently that we sometimes say things that make no sense to others, but make perfect sense to us. Once in elementary school, we had a police officer give us Halloween safety tips (this was during the ‘razor blades hidden in apples’ scare). I raised my hand and asked, ‘What if the house we are trick-or-treating at has a trap door? How do we handle that situation?’ The cop told us that this was very unlikely to happen, which didn’t answer my question. Later, my teacher told me that my question was inappropriate. I had no idea what the hell she was talking about.”

You see the problem: If we don’t teach our children how to handle Scooby-Doo-style trap doors, we are literally letting our children down.

Hanna-Barbera“He didn’t even get to my question about what to do in the event of a hallway full of parallel doors.”

So how do you effectively communicate with someone with autism? Be blunt. Don’t rely on nuance or social cues — tell them exactly what you want.

Carson: “My parents were blunt. They’d just say, ‘Carson, you’ve got to end the story now.’ It seems aspie kids operate on a sense of directness and logic. If you explain the logic of something rather than get them to try and pick it up themselves, it’s better in the long run for them.”

And sometimes pushing an autistic person (not literally, jerk) into a situation they’re unfamiliar with can be exactly the lesson they need:

Carson: “I first got a job at 16. I work currently at the ballpark as a summer job — selling popcorn and snacks, and after a while, selling beer. When I started, I had difficulty convincing myself to yell. I wasn’t very good at that because I didn’t like the idea of that much attention. But I realized I was not the only one yelling, and then it was fine.”

Jay Silverman Productions/Photographer’sTurns out it’s kinda hard to steal attention from a drunk, painted man screaming obscenities.

We shouldn’t have to explain that being blunt does not mean, “Be an uncontrollable dickhead to any autistic person you meet from now on. They love it!” We shouldn’t have to, but knowing the Internet, we probably do.

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For People With Autism, Work Is a Huge Hurdle

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One in three young autistic adults has zero paid work experience, even seven years after high school graduation. This is significantly higher than the rate for people with mental disabilities. We’re not going to claim there’s only one cause for so large a problem, but being seen as even a little weird can torpedo your chances in the working world.

Nina Mason: “I can’t prove I was fired from my last job for being autistic. What I can do is say that it’s awfully funny that I was ‘doing a great job, just relax a little — you don’t need to push yourself to learn everything so fast’ until four days after I disclosed to my boss, and then suddenly I was ‘making customers uncomfortable’ and ‘not learning company standards.’ I’ve had people tell me I made them uncomfortable because the Aurora shooter had autism. To my face.”

STF/AFP/Getty ImagesWhich is about on par with being linked to Charles Manson because of a similar haircut.

As Chris pointed out, deciding whether or not to disclose your autism to an employer is a major choice:

“If we admit to being autistic upfront, that means a reason not to hire us. If we don’t and we get the job somehow, we risk being fired because of the whole ‘there’s something a little odd about that person; I don’t like them’ crap.”

NAN104/iStock/Getty Images“Pros: highly qualified professional. Cons: holds eye contact a little longer than usual.”

And while “coming out” to your employer can have some serious negative repercussions (as Nina experienced), it might also really help:

Chris: “At work, I had a coworker who would always avoid me. She had a look in her eyes that indicated that she found me creepy somehow, as I did nothing more than walk down the hall. It’s hard for me to look natural — natural for me is either staring straight ahead, staring at the person, or avoiding their gaze. She seemed to find me creepy … until one day she randomly warmed up, and was nice after that. I imagine she must have told her boss (who knows I’m autistic) that I was creeping her out, and got set straight.”

Photodisc/Photodisc/Getty ImagesNaturally creepy guys: This is not the excuse you should use to make women warm up to you.

 

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Light it Up Blue” for Autism Hosted by the City of Temecula and Our Nicholas Foundation

On Sunday, April 2, 2017, the City of Temecula and Our Nicholas Foundation will Light It Up Blue at City Hall (41000 Main Street) to commemorate Autism Awareness for the month of April.  Light It Up Blue is the unique global initiative that helps to raise and shed light on Autism.  In honor of this historic day, many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges, and retail stores in the region are among the hundreds of thousands of homes and communities that take part in Light It Up Blue.

Council Memeber Mike Naggar said, “Our lives are all touched in one way or another by the growing epidemic of Autism.  I’m very proud of the efforts that we have taken to increase awareness, not only in children with Autism, but to all disabilities and that Temecula’s City Hall will be lit up blue alongside other communities across the nation.  I invite and encourage our local businesses and residents to do the same.”

Thousands of children throughout our region, like many other regions throughout the Nation, are impacted by Autism.  Autism is the fastest growing developmental disability in the United States. The City of Temecula recognizes that youth with special needs and their families have unique needs that are not easily addressed.  The City of Temecula is committed to inclusion and providing opportunities for recreation and enrichment that improves the quality of life to residents of all abilities.

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Donald Trump Will Be A Disaster For Autistic People – Term Life

Donald Trump has never been a fan of disabled people. He’s got an obsession with the appearance of being “weak” or “crazy,” was hyperfocused on the idea that Hillary Clinton had some kind of neurological disorder like epilepsy, which he clearly viewed as a sort of human failing, and infamously mocked reporter Serge Kovaleski. But of all of the groups out there whom Donald Trump disdains, whom his policies will endanger profoundly, autistic people stand to suffer the most.

Trump’s coming at them from all sides. First, there’s his coy dabbling with antivaccine generalissimos like Robert F. Kennedy, Jr., and theVaxxed crowd. Kennedy met with Trump and claimed that Trump had invited Junior to head up a “vaccine safety and scientific integrity” commission of some kind. It would certainly be richly ironic to have avowed antivaccine irrationalist Kennedy head up a commission on anything having to do with public health. The Trump team almost immediately equivocated about Kennedy’s statements, basically categorizing them as the equivalent of a nice chat. Currently, Kennedy is reported to be saying that he will be heading up such a commission while the Trump camp has no more comment.

But that chat, according to Trump’s team, was about autism, not vaccines, and about “forming a commission on Autism [sic].” Add that to Trump’s brash and reckless pre-election assertions about vaccines and autism, one of the few public health issues he attends to at all, and you’ve got the makings for an all-out destruction of the edifices that support the autistic population. Trump’s negative attention never bodes anything good and almost invariably means he intends to lay waste to the target.

 Toying with Kennedy and bringing up autism yet again is just one way that Trump threatens this nation’s autistic population. And yes, it is a threat because every time someone raises autism as a specter and consequence to fear from vaccines, autism gets cast as the bogeyman. Trump’s own spouse seems to view a presumption of autism as an unforgivable insult. Vaccines aren’t the really scary thing in these narratives. Autism is. When you set up a neurobiological condition as something to fear, you set up the people who are that neurobiology as fearsome, too. And that has consequences ranging from social shunning and abuse to death and more death.
 In addition to doing this nonfavor to autistic people by way of coying a relationship with RFK, Jr., Trump is coming at the autistic community on its flanks. His nominee for attorney general, Jeff Sessions, thinks that the Individuals with Disabilities Education Act “undermines the educational process,” and he shows a clear ignoranceof this and other federal protections for disabled children in the classroom. Based on Sessions’ own comments, if he had his way, these protections would be gutted or ignored, leaving autistic students and other disabled children warehoused and isolated, treated like second-class citizens or worse. Trump’s choice for education secretary, Betsy DeVos, is no fan of public schools, the only place where students with disabilities can receive their federally mandated educational rights.

With these attacks on the intrinsic humanity and education rights of autistic people, Trump also is coming at them on the health flank. With the collusion of most of the GOP in Congress, he plans to repeal the Affordable Care Act (ACA; a.k.a., “Obamacare”), a law that has been critical and lifesaving for the disability community as a whole and life-changing for autistic people. ACA allowed for early screening (and therefore early identification, awareness and, one hopes, understanding) without cost sharing. It removed lifetime caps and denial of coverage for pre-existing conditions. For the U.S., without ACA, 1% to 2% of the population would be considered to have a pre-existing condition called autism. Currently covered therapies for autistic people might no longer be covered. And then there are the co-existing conditions, like epilepsy, which about a third of autistic people have. And the coverage under ACA that extends to adult children up to age 26 years, critical coverage for young autistic adults whose access to jobs can be delayed or denied.

Then there are the threats to Medicaid. If Medicaid is gutted as threatened by being shifted to block grants, disabled and elderly people who received in-home care through its benefits will also be warehoused in institutions. Many of those affected will be adult autistic people. And lest you are not autistic and think that somehow will protect you, a reminder that in 2015, a total of 53 million adults in the United States had some kind of disability. That’s one in five adults, right now. How many adults do you have in your home? If you’re a family of five, odds are good that at least one of you will have a disability in adulthood. How would you like to be institutionalized and live with strangers to receive your care?

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What is Autism?

Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and early diagnosis/intervention and access to appropriate services/supports lead to significantly improved outcomes. Some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills’ and sensory sensitivities. Again, a person on the spectrum might follow many of these behaviors or just a few, or many others besides. The diagnosis of autism spectrum disorder is applied based on analysis of all behaviors and their severity.

In March 2014, the Centers for Disease Control and Prevention issued their ADDM autism prevalence report. The report concluded that the prevalence of autism had risen to 1 in every 68 births in the United States – nearly twice as great as the 2004 rate of 1 in 125 – and almost 1 in 54 boys. The spotlight shining on autism as a result has opened opportunities for the nation to consider how to serve families facing a lifetime of supports for their children. In June 2014, researchers estimated the lifetime cost of caring for a child with autism is as great as $2.4 million. The Autism Society estimates that the United States is facing almost $90 billion annually in costs for autism. (This figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, related therapeutic services and caregiver costs.)

Know the signs: Early identification can change lives

Autism is treatable. Children do not “outgrow” autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes. For more information on developmental milestones, visit the CDC’s “Know the Signs. Act Early” site.

Here are some signs to look for in the children in your life:

  • Lack of or delay in spoken language
  • Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
  • Little or no eye contact
  • Lack of interest in peer relationships
  • Lack of spontaneous or make-believe play
  • Persistent fixation on parts of objects
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Autism Mom Says This Nasty Note About Her Son Was a “Blessing in Disguise”

In 2016, Muskegon mom, Brittany Miller, was out shopping with her six-year-old son, Grandy, who is on the autism spectrum. Grandy’s special interest is fire alarms—he knows all different kinds of makes and models, and when he’s overwhelmed, he imitates their noises to calm himself down.

That day in Meijer, he was riding a coin-operated pony and making fire alarm noises. Miller stoppedand turned around to help him fix his shoe, and when she looked back up, she found a note placed on top of the bags in her cart.

The anonymous message was short and incredibly rude:

“Buy that kid a muzzle!”

Unfortunately, this kind of occurrence isn’t all that rare for autism parents. Many find themselves falling under the judging eyes of strangers who just don’t understand autism. Others receive unwanted comments. And still others find themselves getting cruel notes like the one Miller received.

But instead of brushing it off, Miller reached out to 24 Hour News 8 and shared the story, hoping to use the letter to educate the public.

The result was far more incredible than she had expected.

For one, it wasn’t long before her email inbox was flooded with messages from all sorts of sources. There were parents thanking her for sharing the story and asking if they could send gifts to her or Grandy. There were fire alarm companies that contacted her, as well.

And several fire alarm companies sent Grandy his favorite thing in the world as gifts, too. “It was like Christmas for him,” Miller said.

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That in and of itself is amazing enough, but something even greater is happening: for Grandy’s seventh birthday—which will be on March 6, 2017, Honeywell Company is bringing the mother-son duo to their factory in Connecticut. There, they will give him a tour and throw him a birthday party. (Best birthday ever? I think so!)

So let this story be a helpful reminder to you. Some people in this world are cruel and ignorant, yes, but there are also so many other people who are kind, understanding, generous, and helpful. As we continue to fight for worldwide autism awareness and acceptance, may this story, and others like it, give us all hope that change is just around the corner.

For young adults on autism spectrum, jobs program opens up new dreams

When Laini Sohn started her internship at Kennedy Health’s Cherry Hill campus  last month, the 21-year-old seemed willing enough to work and learn. Still, her supervisor Carol Nilsen wasn’t quite sure what to expect.

“I didn’t know what she was capable of,” Nilsen said. “I gave her a task that should have taken 2½ weeks.”

Sohn, though, didn’t know how long the data-entry assignment was supposed to take.

“She got it done in three days,”  said Nilsen, still sounding surprised. “She just plugs away.”

Laini Sohn and her fellow interns are all on the autism spectrum. They are part of an international program that is opening employers’ eyes to what people with developmental disabilities can do.

Project SEARCH prepares workers for entry-level jobs that pay competitive wages because they fill real needs for employers seeking reliable help. Cofounder Erin Riehle helped start the program about 20 years ago when she was director of the emergency department at Cincinnati Children’s Hospital Medical Center.

Riehle needed to fill jobs that many people find boring, perform without enthusiasm, and often quit without much warning. Project SEARCH sought to prepare people with disabilities to do these jobs and thrive in a workplace with people of all abilities. Since then, the program has been replicated at more than 300 sites in the United States, Canada, the United Kingdom, and Ireland.

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In one study, 61 percent of the developmentally disabled young adults who graduated from the program found positions at about $9.20 an hour for more than 24 hours a week. For graduates on the autism spectrum in the study, the employment rate was 53 percent, compared with about 33 percent for people on the spectrum who had not been in Project SEARCH. The more recent overall employment figure for Project SEARCH graduates is over 75 percent.

With the help of funding from New York Collaborates for Autism, a pilot program to improve those results started last fall at Kennedy. Most of the seven interns were from the Y.A.L.E. School for people with developmental disabilities in South Jersey and Philadelphia. Drexel University’s  A.J. Drexel Autism Institute is conducting a second pilot with Philadelphia public school students.

According to government estimates, one in every 68 U.S. children now is being diagnosed on the autism spectrum; early intervention programs are helping more people reach their potential so they can go on to hold jobs and live independently.

Autism spectrum disorder is a complex developmental disorder marked by difficulties in social interactions and verbal and nonverbal communication, and often repetitive behaviors, all which can make it hard for people on the spectrum to function and get along in a work setting.

The Project SEARCH interns are on the work site five days a week with a teacher, job coaches, and mentors. They go through three different placements in each company so they can learn different  job skills. While other work programs for people with disabilities end in positions that are just a day or two a week, Project SEARCH emphasizes jobs that are close to full time. Plus, graduates are competing with candidates who don’t share their disability.

Still, accommodations are made to help people with autism, such as increased structure, more use of pictures in the teaching sessions, and extra help navigating social interactions. For example, interns may be encouraged to have lunch with their coworkers, rather than with fellow interns. Trainers don’t assume anything: When snow was forecast recently, the Kennedy interns were told to email their supervisors if they couldn’t make it in.

And as with any Project SEARCH work site, interns’ supervisors and coworkers also get some coaching so they are more comfortable with their new colleagues.

“Just as people with disabilities aren’t being taught skills, people in business aren’t being taught to work with people with disabilities,” Riehle said.

Christian Kearse, 21, a Project SEARCH intern in the Drexel program who had attended Parkway West  High School, has been working at the Barnes & Noble College Bookstore. Kearse doesn’t speak, and that’s fine in his new job — he wrote that his favorite part of the internship has been learning new things, such as using a laptop, emailing, and folding clothes.

“The purpose of Project SEARCH was to teach job skills and prepare interns for jobs after high school,” said bookstore general manager John Rorer. “In hindsight, I am not sure who gained a more valuable experience, the interns or myself.”

Kennedy storeroom manager Dave Koss said he and his staff were apprehensive before the program. They hadn’t expected how helpful the interns would be and how enjoyable it was to help them learn.

“I think that, as Project SEARCH helps those with autism to learn job skills, more people at Kennedy and in the community will learn not to think about the inabilities that people with disabilities have,” Koss said. “They actually have a lot to contribute and are very capable people.”

Said Peggy Chapman, Y.A.L.E. assistant director: “We’re breaking down some of those old-fashioned stereotypes that don’t apply.”

In addition, Chapman said, the program, along with recent law changes, is bringing together the school, its students, and state agencies to help plan for the young people’s transition into work before they age out of the education system at age 21. Under the federal Individuals With Disabilities Education Act, disabled people are entitled to education up to the age of 21.

Ernie Laux, the Kennedy interns’ teacher, has worked with Y.A.L.E. students seeking to transition from education to work for more than a decade.

He finds that they relish being at work for more hours than traditional programs for the disabled offer, and they thrive on being treated like anyone else.

” ‘I can be with new people,’ ” Laux said students will say.  ” ‘I can do new things. I can do what neurotypicals do.’ ”

Students are not guaranteed jobs with their internship employers, though some have been told they’ll be able to stay on.

Anthony Goodson, 21, of Camden, worked the storeroom at first, which was too solitary for his gregarious nature. Now he works to keep the emergency department stocked with supplies, which keeps him on the move and interacting  with his coworkers.

“I love my job, ” Goodson said. “I love my work.”

Laini Sohn wasn’t too thrilled with her first post — environmental services, including cleaning rooms. She is a small person and has some coordination issues that made handling bedsheets on her own a challenge. Even so, she got a note of thanks from a patient for her kindness.

Her new internship working with computers is much more to her liking. She hopes to get a similar permanent position and go to community college.

Her dream job?

“Editor,” said Sohn. “To be able to correct people’s grammar without being called a butt for it.”

Her mother sees new possibilities for Laini she once might not have dared to contemplate. When Laini was in middle school, Judi Sohn had to fight with the central New Jersey  school district where they lived to get her daughter the help she needed. They ultimately moved to South Jersey because they found support in the public schools and Y.A.L.E.

Like many parents of children on the spectrum, Judi Sohn was reluctant to think about what would happen when her daughter’s school years were over.

“I never let myself think that far in advance,” Sohn said. “I always hoped that she would have a job. I couldn’t picture how it would be possible. Now I can picture how it could be possible.”

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68 Things to Know About Autism – Term Life

Most families I talk to today are always looking for facts and statistics about autism to help better educate themselves and their communities. Thanks to wearing many hats in the autism community, today I wanted to share the top 68 things I believe our community should know about autism…

  1. To start… 70 million individuals worldwide have autism.
  1. Around 50% of individuals with autism wander from a safe environment, and over 50% go missing.
  1. Autism is the fastest-growing developmental disability in the United States.
  1. 1 in 42 boys are diagnosed with autism.
  1. 1 in 189 girls are diagnosed with autism.
  1. Over 3.5 million individuals in the United States have autism.
  1. Boys are nearly five times more likely than girls to have autism.
  1. Autism-related costs average $60,000 a year per family.
  1. 1/3 of individuals with autism also have epilepsy.
  1. Rain Man has the most Oscar wins of any autism-related film.
  1. Temple Grandin has the most Emmy wins of any autism-related film.
  1. The highest prevalence of autism currently is in New Jersey with every 1 in 45 individuals being diagnosed and 1 in 28 boys.
  1. The average age of diagnosis of autism is 4 years of age.
  1. Half of children identified with an Autism Spectrum Disorder have average or above-average intelligence.
  1. A child can be diagnosed with autism as early as 18 months.
  1. In 2007, the United Nations declared April 2nd as World Autism Awareness Day.
  1. April is Autism Awareness Month.
  1. As part of April 2nd, Autism Speaks started the global autism awareness initiative calledLight It Up Blue.
  1. There is currently no medical test to detect autism or a cure.
  1. In 2014 the Autism CARES Act was passed in Congress giving 1.5 billion dollars of federal funding towards autism for the next 5 years.
  1. About 25 percent of individuals with autism are nonverbal.
  1. Currently, 40 states have autism insurance reform and counting.
  1. 30-50% of individuals with autism also have seizures.
  1. Dr. Leo Kanner was the first to describe autism in 1943.
  1. There are five types of autism-spectrum disorders: Pervasive Developmental Disorder- Not Otherwise Specified, Autism, Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.
  1. You can see the signs of autism in infants as young as six months.
  1. In 2012, only 0.55% of National Institutes of Health Funds Allocation (NIH) went directly to autism research ($169 million out of $30.86 billion)
  1. About 1% of the world population has autism.
  1. 35% of young adults (19-23) with autism have not had a job or received post graduate education after leaving high school.
  1. 90% of adults with autism are unemployed or underemployed.
  1. 38. 1 in 5 Americans currently have a disability.
  1. Autism services cost U.S. citizens $236-262 billion annually.
  1. African-American and Hispanic children are diagnosed far later than Caucasian children.
  1. There is a wide spectrum of Autism-related disorders. If you’ve met one person with autism, you’ve met one person with autism.
  1. Some celebrities also have autism (i.e. Dan Aykroyd, Susan Boyle, Daryl Hannah, Temple Grandin, John Elder Robison, etc.).
  1. Autism is often labeled as a social and communication disorder, although some with the diagnosis may deal with other challenges such as sensory, cognitive and motor issues.
  1. The popular image of autism often falls with children. More than 80% of those currently on the spectrum are children.
  1. Drowning is the leading cause of death among children with autism.
  1. Suicidal thoughts are 10 times more likely in adults with autism than those without.
  1. Autism is a lifelong disorder. It doesn’t go away when you become an adult.
  1. Autism Speaks currently has 40 tool kits and counting to help better educate our community on everything from early intervention to adulthood. They are all available for free download here.
  1. Many people with autism have key interests that can be utilized by employers in the workplace. (i.e. just because you have a disability doesn’t mean you don’t have abilities)
  1. There is great literature available on autism today. Look Me in The Eye (by John Elder Robison) and The Reasons I Jump (by Naoki Higashida) for example, were two books on autism that made the NY Times Best-Seller List.
  1. Programs like Project Lifesaver and The Big Red Safety Tool Kit by The National Autism Association are helping to educate and provide resources for our community on the issue of wandering.
  1. Individuals with autism who need therapy should be seen on a case-by-case basis. Although some therapies are debated today some of the most universal therapies that are helping today are physical, occupational and speech therapy.
  1. Other therapies currently suggested to help individuals with autism include: Music therapy, Theatre therapy, Early Start Denver Model, Visual Schedules, Sensory Integration therapy, Applied Behavioral Analysis, Social Story Therapy, Pivotal Response Treatment, and Cognitive-Behavioral Therapy.
  1. Although therapies are pivotal for individuals with autism, other things such as a healthy diet and daily exercise are seen as ways to help them progress. In the past, a Gluten-Free diet has been seen as helpful.
  1. More than half of children with autism are bullied at some point in their lives and twice more compared to their peers who don’t have a disability (IAN).
  1. More than half of bullying is also stopped when a peer intervenes showing the importance of not only autism awareness but also autism acceptance.
  1. Autism Speaks, since it was founded in 2005, has given more funding towards its mission than any other autism organization in the world ($525 million)
  1. The majority of scholarships available for individuals with autism for post-secondary programs are for those with physical disabilities. Programs such as KFM Making a Difference are offering scholarships for those with autism to help change that conversation.
  1. An Individualized Education Plan (IEP) helps students with disabilities from Pre-K through High School get the services they need. If they get into a post-secondary program, they lose their IEP and instead have to advocate for their accommodations through Reasonable Accommodations.
  1. The Achieving a Better Life Experience Act (ABLE Act) that passed through Congress provides families with the opportunity to receive tax-free savings accounts for their loved ones to save up for when they are adults.
  1. Many individuals with autism are self-advocates in our community and have provided powerful quotes for our community. It’s important to remember individuals with autism sometimes see autism as a part of who they are. Dr. Temple Grandin, one of the most renowned autism advocates in the world says it best with her quote “Different not less.”
  1. As an autism advocate for the past eight years, I’ve traveled the world talking about disability-related issues. Last year, I was certified as a national publicly accredited speaker from The National Speakers Association. At that time, I’ve been able to write two best-selling books on autism and work on five autism-related films. You can learn more about my background at www.kerrymagro.com
  1. Autism is reported to occur in all racial, ethnic and socioeconomic groups.
  1. Those with autism can feel empathy and love. Websites such as http://wrongplanet.net/help provide individuals with autism the chance to make friendships and relationships with one another online.
  1. Autism is NOT a disease.
  1. Autism has found a place in television today. Shows like NBC’s Parenthood (which is now available to watch on Netflix) have shown realistic portrayals of individuals with autism.
  1. Grassroots efforts by our community are helping our local political officials understand the importance of autism legislation. Initiatives such as Autism Votes, which you can learn about here, are a great way to get started on how you can make a difference in your town!
  1. People on the autism spectrum are especially vulnerable to bullying. Nearly two-thirds of these individuals have been bullied.
  1. Technology can be used as an advantage for those on the spectrum. Autism Speaks provides an Autism App list here of what’s helping our community today!
  1. College individuals are helping spread awareness and support for autism. Learn to see if your college has an Autism Speaks U Chapter and/or how you can start one atwww.Autismspeaks.org/U
  1. Autism Speaks currently has the greatest Facebook following of any related autism organization while Carly Fleischmann had the greatest Facebook following of any individual with autism.
  1. There are currently 400,000 volunteers and walkers that participate to help support Autism Speaks through their Walk Now for Autism Speaks events. See if there is a walk in your area at www.walknowforautismspeaks.org
  1. MSSNG is a project by Autism Speaks and Google and sets out to sequence the DNA of 10000 families affected by autism. You can learn more about the initiative atwww.mss.ng/
  1. There is no known scientific link currently between vaccines and autism.
  1. 1 in 68, individuals are currently diagnosed with autism.

Throughout the month of April and all year round I hope you share this piece to educate our community. The number of people on the autism spectrum is constantly growing. When I was growing up, the numbers were closer to 1 in 1000 individuals being diagnosed. It takes a village to make change, and we can make it a reality.

There’s no better time to start than now…

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6 Facts You Need to Know About Autism – Term Life

There are lots of frightening rumors about what causes this mysterious brain disorder in children. We asked leading experts across the country for the very latest news.

Facts Every Parent Should Know

Nancy Wiseman had a feeling early on that something wasn’t quite right with her daughter. When Sarah was 6 months old, she stopped babbling, and by 10 months, she was silent. By 18 months, the increasingly aloof toddler no longer responded to her name, and she resisted being held, kissed, or touched. “I felt that I was losing my child a little more each day,” says Wiseman, of Merrimac, Massachusetts. When Sarah wasn’t saying any words or even making sounds that resembled words by 20 months, her grandmother, a school psychologist, suspected that the girl might actually be deaf. Instead, Wiseman was devastated to learn that her daughter had autism. “The diagnosis really knocked the wind out of me,” she recalls, “but I was relieved to finally know what was wrong.”

Although the severity of autism can vary widely, many children with the neurological disorder — which typically appears in the first three years of life — have problems speaking, interacting with others, sharing affection, and learning. Thanks to the tireless efforts of parents and advocates, public awareness of autism has grown tremendously since it was first identified in 1943, but it is gaining even more attention today than ever before. Congress has held hearings on the condition. Public-health agencies are spending millions to study it. Researchers at countless universities are racing to find the causes and best treatments.

“There are many unanswered questions,” says Alice Kau, Ph.D., an autism expert at the National Institutes of Health, which funded more than $74 million in autism research in 2002, as compared with only $22 million in 1997. Still, researchers are beginning to make progress in unraveling this baffling disorder, and the number of resources available for families is increasing. Here, six facts about autism that every parent should know.

1. RATES ARE ON THE RISE

Autism is ten times more common today than it was in the 1980s, according to the Centers for Disease Control and Prevention. An estimated 1 in 88 children (11.3 per 1,000) in this country have autism to some degree. In California, the number of kids with autism in the state’s social-services program nearly doubled between 1998 and 2002, surpassing cases of childhood cancer, juvenile diabetes, and Down syndrome. Nationwide, autism strikes three to four times more boys than girls; the rates are about the same for kids of all races.

Although there seems to be an autism epidemic, most experts attribute the increasing prevalence to improved diagnosis and reporting. The definition of autism has been expanded in the past decade to include a wider spectrum of problems with communication and social interaction. “Ten years ago, many children with mild autism were simply not diagnosed,” says Adrian Sandler, M.D., a developmental-behavioral pediatrician at Mission Children’s Hospital, in Asheville, North Carolina, and chair of the American Academy of Pediatrics’ committee on children with disabilities. Plus, there are more state and federal programs for autistic kids, giving doctors an incentive to diagnose and refer them. However, there may be additional, unknown reasons for the spike in autism rates, and researchers are investigating everything from environmental toxins to viruses to food allergies.

2. KIDS ARE GETTING DIAGNOSED SOONER

There’s no laboratory or medical test for detecting autism, so doctors must rely on behavioral signs. In the past, many were reluctant to label a child as autistic until symptoms became obvious. “The average age for diagnosis had been about 3 1/2, with many children diagnosed much later,” says Amy Wetherby, Ph.D., director of the Center for Autism and Related Disabilities at Florida State University, in Tallahassee. But that’s changing.

One reason is that pediatricians are becoming more aware of autism. At the same time, autism specialists are better at identifying early telltale signs such as a lack of babbling or pointing. “Most children with autism will show some signs of developmental disruption by their first birthday,” says Rebecca Landa, Ph.D., an autism researcher at Baltimore’s Kennedy Krieger Institute.

And while no one is yet diagnosing autism in children that young, doctors can now make a reliable assessment by 24 months — when a child’s brain is still rapidly developing. “If we can intervene while a child’s brain is very immature, it will be much easier to help change her behavior,” Dr. Wetherby says.

3. AUTISM IS A GENETIC DISORDER

Although autism was once believed to be the result of improper parenting, researchers now believe that genes — not psychological factors — are to blame. If a couple has one autistic child, there is a 5 to 10 percent chance that siblings will have some sort of autistic disorder. With identical twins, the likelihood is 60 percent. Even though profoundly autistic people rarely have children, researchers often find that a relative has mild autistic symptoms or a high-functioning autistic-spectrum disorder known as Asperger’s syndrome.

Experts believe that autism is the result of multiple genes — anywhere from three to 20 — interacting with each other. This may explain why the symptoms and severity of the disorder vary greatly. These genes may cause a baby’s brain to develop abnormally in utero or make him more susceptible to unknown triggers. “There is probably a combination of genetic and environmental influences,” says Catherine Lord, Ph.D., director of the Center for Autism and Communication Disorders at the University of Michigan, in Ann Arbor. Although the genes linked to autism have not yet been pinpointed, intense research is under way.

4. THERE IS NO KNOWN SCIENTIFIC LINK BETWEEN VACCINES AND AUTISM

There’s been widespread controversy about a possible connection between vaccines and the soaring autism rates. Some parents of children whose autistic symptoms first appeared shortly after their measles-mumps-rubella (MMR) immunization are convinced the shot was the cause, but repeated studies have failed to find scientific evidence. Although one small, heavily publicized British study published in 1998 suggested a link, 10 of the 13 authors publicly retracted the findings in March 2004, saying they were unreliable. The study, lead by Dr. Andrew Wakefield, only studied a small sample of 12 kids, eight of whom were diagnosed with autism. By early 2010, the same British journal, The Lancet, that published his findings retracted his study and in January 2011, theBritish Medical Journal publicly denounced Dr. Wakefield’s research as “fraudulent.” The British Medical Journal announced that Dr. Wakefield had “falsified data” and tampered with his research results to give the MMR vaccine bad publicity. At the time of his study, Dr. Wakefield had been involved in a lawsuit against the manufacturers of the MMR vaccine and would have gained money if he’d won, making his research an obvious conflict of interest.

Because the MMR vaccine is routinely given at 12 to 15 months — when the first symptoms of autism often become noticeable — the apparent association is a coincidence, says Parents adviser Neal Halsey, M.D., director of the Institute for Vaccine Safety at Johns Hopkins University, in Baltimore. Up to 40 percent of children with autism typically experience regression at 12 to 18 months; they start developing normally but then suddenly lose communication and social skills.

The possibility that mercury poisoning might cause autism is also a concern. Since the 1930s, a preservative called thimerosal, which contains small amounts of mercury, had been used in some childhood vaccines (not MMR). Although mercury is known to be harmful to the brains of infants and young children, most vaccine experts say the amounts used in the preservative were too tiny to cause neurological damage. Nevertheless, manufacturers voluntarily began removing thimerosal in 1999, and by the end of 2001, none of the routine vaccines given in early childhood contained the preservative. The preservative is now used only in flu shots and some vaccines given to adults and adolescents.

5. LARGE HEAD SIZE IS A RED FLAG

Recent findings published in the Journal of the American Medical Association suggest that the brains of children with autism develop differently from an early age. Researchers discovered that most infants who were later diagnosed with autism had small head circumferences at birth but had heads — and brains — much larger than normal by 6 to 14 months. “Some of them went all the way up to the 90th percentile in just a few months,” says study coauthor Natacha Akshoomoff, Ph.D., an assistant professor of psychiatry at the University of California, San Diego. Those who ended up with the most severe form of autism were found to have the most dramatic acceleration of brain growth during infancy.

Pediatricians don’t always measure head circumference at well-baby visits, so it’s wise to request it. However, don’t panic if your baby’s head size is above the norm. Some babies just have big heads. “Rapid head growth is not a way to diagnose autism,” Dr. Akshoomoff points out, “but it means that a child should be watched closely to be sure that she meets speech and behavioral milestones.”

6. EARLY TREATMENT IS CRUCIAL

There is no known cure for autism, but intensive therapy helps a child learn a wide range of skills — from making eye contact to hugging to having a conversation. And the sooner a child begins, the better. A panel of experts convened by the National Academy of Sciences in 2001 recommended that children should have 25 hours of therapy per week as soon as autism is suspected. Because children with autism have very different behaviors and abilities, the most effective approach takes into account a child’s unique challenges and encourages healthy development through play, rather than just trying to change specific symptoms. “Intervention can take many forms, from going to a regular preschool to a parent’s working with her child over the course of a normal day to direct therapies from well-trained teachers and professionals — all depending on the child,” Dr. Lord says.

Thanks to early intervention, some children — like Nancy Wiseman’s daughter, Sarah — make remarkable progress. “At the very least, we’re able to lessen the severity of symptoms,” says Dr. Lord, who chaired the expert panel. “The latest studies show that almost 80 percent of kids with autism now have some speech by age 9, whereas only 50 percent of these kids were talking 20 years ago.” And though past research suggests that most autistic children have below-average cognitive abilities, a recent study found that early treatment raised children’s IQ scores by about 20 points, to almost normal levels. Those who started therapy as toddlers were also more likely to attend regular kindergarten.

One of the biggest remaining challenges is the shortage of trained therapists and spots in special-education programs and schools for children with autism. To address this problem, the federal government recently announced a ten-year plan to provide adequate services.

While there’s still much about autism that remains a mystery, research scientists are making new discoveries every day. In fact, they say, it may be possible to cure autism one day — perhaps through gene therapy even before a child is born. But for now, early diagnosis and therapy offer the best hope. “There’s no doubt that today’s generation of autistic kids will be better off than previous generations, because they’re getting help sooner,” Dr. Wetherby says.

A Toy Store for Children on the Autism Spectrum

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Illinois’ first toy store aimed at children with developmental challenges recently opened for business in Chicago. The store functions as part of the non-profit CARE Foundation and specializes in toys for children on the autism spectrum, marketing itself as a one-stop shop for parents and educators.

Spectrum Toy Store is owned by Jamilah Rahim, a home behavior therapist with a master’s degree in Special Education, who says she saw a need for this type of store. “I did in-home behavior therapy with families and I was able to see firsthand what kind of toys the kids played with, what they were into.”

She found out that most parents bought their toys online because there was nowhere local to shop for the specialized items they needed, and the idea for Spectrum Toy Store was born. The store helps take some of the guesswork out of buying the perfect toy because everything has the option to “try before you buy.” Jamilah explains, “They are able to come in here, play with the items, touch them, feel them see them and then determine what works for their child.”

In addition to selling sensory toys, specialty products and adaptive equipment, the store also offers therapeutic programming and hosts group activities. The focus is on children ages 3-13.

“We do different activity groups. We focus on different core areas, like communication skills, life skills, cognitive skills, gross fine-motor skills and sensory play. All of the classes are play-based since we are a toy store. We try to gear everything around play, so we do different activities with different toys to help support the skill deficit that children may have.”

To date, community feedback has been positive. Jamilah listens when parents tell her what works well for their children and strives to stock the items that fit the community. She also plans to launch a monthly toy subscription service this holiday season. Proceeds from the service will fund scholarships for local children to attend summer day programs planned for next year.

Thanks Mom: What My Mother Did Right- Frank Klein

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I would like to take this opportunity to express my thankfulness to my mother, who did not seek intervention for my autistic traits. At the time I was a toddler, which was in the early to mid 1970s, autism was not thought of as a spectrum disorder. It was synonymous, for the most part, with what we now call “low-functioning” autism. Certainly I did not present as low-functioning, so I never would have been flagged as having been autistic. The condition we now call  high-functioning autism did not gain any real notoriety in the English-speaking world until after the publication of Lorna Wing’s 1987 review of Hans Asperger’s work. The debate as to whether Kanner’s autism and Asperger’s autistic psychopathy, which Wing dubbed “Asperger’s Syndrome,” were completely separate or related conditions led directly to the concept of the “autistic spectrum,” which is now considered to be factual by most. As far as de facto autistics go, I am very much on the “mild” end of the spectrum. Still, as a child, my behaviors were pretty obviously autistic.

I do not blame my mother a bit for not making the connection between my unusual childhood behaviors and autism. Even most doctors at that time knew little, if anything, about autism, so I would not expect a young, first-time mother to know what her physicians probably did not. She knew from the beginning that I was unusual, but as long as I seemed to be thriving, she was not too worried. As I learned more about my first three years, as a result of pestilent questioning, I realized that my first signs of autism went right to my date of birth. I could not suck from a nipple (of any kind) and coordinate the swallowing movement. I lost nearly a pound of my premature six pound weight before this was remediated. At one month of age, which would have been my due date, I learned to suck and swallow. Still, though, things were not normal.

I learned to turn over early, but it was not a graceful movement so much as a flopping over by flapping my spindly limbs. Soon I lost that ability and did not regain it until much later. Babbling was limited, and other than fits of screaming for unknown reasons, I was a quiet baby. I did respond to tickling and such things with a smile, though, and no one ever thought I was deaf. If anything, my hearing was hypersensitive, and I noticed every little noise, even if others initially didn’t. Before my first birthday, I began to resist being picked up, and I did not like to be held. I never crawled; I rolled, right up until I began to walk in the fourteenth month. I still hadn’t uttered any words. I continued to
make noises and verbal stims, but no words, until about the twenty-fourth month, at which time I began to speak… in sentences. Many of them were echolalic, including instant and delayed parroting of TV commercials. As my ability to express myself grew, I began to do the pronoun reversals, and to call myself by my first name instead of “I.” At about that time, I was first introduced to children my age. I ignored them totally, as if they were not there. I could be “in a room full of kids and still be totally alone,” my mother tells me. I would also spin any object I could get my hands on, sometimes causing frustration in adults.

Through all of this, there were no worried visits to the doctor, or fears that I was some genetic freak. When I was about thirty months old, my mother enrolled me in Montessori preschool to try to get me  to be a little more social. The curriculum did not stress group achievement much, but at least I would be exposed to other kids, my mother thought. I did pretty well there, aside from screaming fits when I was first dropped off.

Years later, I began at the local public elementary school, and I began to experience shutdowns in class. The special-ed teacher somehow knew what to do, and would come and get me and give me short breaks from class. That problem was solved, as far as everyone was concerned. It was in about the first grade that I made my first real social overtures toward other kids without prompting.

At home, I did the toe-walking all the time, and I did all sorts of stim behaviors like hand flapping. I still preferred to be alone. I would get obsessed with certain subjects, and I would want to talk about nothing else. I never did that with my peers; I still had little interest in them. Adults, though, would often listen to my precocious lectures, probably very amused by them. I struck everyone as an amazingly bright little boy, and I suppose that I was. That goes a long way in having people excuse your bizarre behavior, at least in the early years. My status as a “gifted” child seemed to be a handy explanation for all of my strange behaviors, including my notable hyperactivity. Certainly, no one thought that there was anything “wrong;” if anything, something was very right about me. Had I not been hyperlexic, I am sure that my autistic behaviors would have been much more objectionable. Fortunately for all involved, I was not self-destructive, and my angry impulses, while obviously present, were well-controlled. I suspect that my mother’s acceptance of my unusual behaviors may have been a significant cause of my nonviolent character. If she had tried to change me, I may not have exhibited such control.

My mother never pushed me to be social when I did not wish to be, and I am glad she didn’t. Some  autistic children (aspies especially) want to have friends, but do not know how to make them. These children should be helped to make friends, but never should the issue be forced. Some children, like me, did not really care about their peers at all, and these children should not be forced to socialize against their will. In time, most will begin to desire social contact in their own way, and forced social interaction will not make that happen any sooner. In fact, it may feel so unpleasant to the child that he associates unpleasant feelings with social contact, and he will be more asocial in the future. Parents often think it is “so sad” to see the little boy or girl playing alone in the corner of the yard, but it is not sad at all if the child is happy that way. I have always preferred solitude, and I am most happy when I am alone. Even now, as an adult, people think it is “so sad” that I spend so much time in my apartment alone. I do it by choice; it is not sad… it is just different.

Similarly, I was never forced to make eye contact or to stop stimming (which my mother called ‘fidgeting’). My mother gently suggested that I might want to stop hand-flapping, so that my peers would not give me a hard time, but never made an issue of it. She never tried to get me to stop rocking; in fact, at one point she bought a rocking chair. These stims are harmless behaviors that help an autistic child release stress and get back in tune with the world. The autistic child’s experience is a bewildering one, full of motions, lights, noises, and odors, and the sensory input sometimes gets to be way too much for the child. At these times, an autistic person may stim, pace, or seek a quiet place with no one around. This is a necessary thing for any autistic person, children included, and by no means should a child be deprived of his outlets to release stress. Normal people have no idea how stressful it is to be autistic. Things that you do not notice may cause more stress for your child than
an unfinished 1040 on April 14th does for you. Never underestimate the stress your child experiences  in noisy, bright, crowded, or social environments. It can be brutal, and the tantrums that may result are beyond your child’s control. This is what autistics often call a meltdown, which happens when you have ignored the signs of stress too long. They are there if you look for them: increased covering of the ears or eyes, increased stimming, increased restlessness or hyperactivity, complaints of upset stomach, increase in that glazed-eye, “million mile away” look… the signs of impending overload or meltdown are numerous, and each child will have his own set. Be aware of them, and do not underestimate them.

In retrospect, my early childhood was quite unusual, but I was accepted for the odd child I was. In my case, that was the best thing for me; I am firmly convinced of that. I began to realize I was different in
about the third grade, but it never bothered me. I was never given the impression that unusual was bad, or that I had a problem. No matter how well-intentioned a parent may be, taking a child to a doctor to see why he is so “weird” tends to implant the idea that there is something wrong, something “bad” about the child. I never knew why I was taken to the special ed classroom to play on the balance beam, but I knew that I was being singled out, and even though it apparently did me some good, I did not like it, and I wondered what was wrong with me. Imagine how much worse it would have been if I had been taken by my mother, whom I trusted more than anyone, rather than a teacher.
Imagine if I had to stand there listening to her tell a doctor about how weird and unacceptable I was (which is the message the child gets). Imagine how much more “weird” I would have felt if I was taken to special classes, or gone to a special school. I am not saying that such things should never be done; on the contrary, in some cases, such things are vital. All I request is that you be aware of the effect these things have on self-esteem. Please, don’t discuss your child’s behavior with the doctor while the child is listening!

As it turned out, at least in terms of academics, special education was not necessary for me, as it is not for a lot of aspies, and a few high-functioning autistics like me. Sometimes parents overreact and put their kids in all sorts of programs just because those programs are there, though. They listen to the doctors make wild guesses about prognosis (and that is all they are– wild guesses), and they panic
about their children’s future. Don’t panic! This has to be approached rationally and logically. If the child cannot function in normal classes, then alternate plans must be made, but don’t make use of resources that are not needed just because you can. Doing so can easily prove to be far more destructive than helpful. An autistic child’s self-esteem is going to take a beating in the years to come, no question about that, so it is imperative that things that will hurt that self-image be avoided if at all possible. Only a very strong self-image will be adequate protection from the self-esteem clobbering that is to come. You must daily work to build that self-esteem.

Depression is an ever-present menace in the autistic community, and this must never be forgotten for an instant. Even if the child does require special education, be sure that he never gets the idea that he is broken or defective. This means going to what you may consider to be ridiculous extremes to prevent this idea from forming in the child’s mind. Never allow the child to think that “different” is not a good thing. This may even mean prohibiting exposure to certain relatives that do not understand
that autism (including AS) is neurological, and not a sign of bad parenting. Some relatives may take it upon themselves to “correct” your child’s behavior… things like pulling the child’s face to theirs and saying, “Look at people when they talk to you, or else they will not like you,” or things like that. If that does happen unexpectedly, rebuke the relative immediately, in front of the child. Explain to that relative, in private, that parenting is your job alone, and if that is not something that relative can  accept, they will not be allowed exposure anymore. This may be very tough to do if the relative is one that you have typically been intimidated by, but it is imperative that you do so.

Anything that makes the child feel bad or embarrassed by his behaviors will cut away at his self-esteem. Please be aware that even when you do all you can to prevent this, the child will begin to notice his differences on his own, and if you allow anyone to plant the smallest seed of doubt regarding the validity of those behaviors, the child will begin to think of himself as lesser than his peers. The child’s peers, especially in a regular school, will pick on a child who is different, and this
is tremendously damaging, especially for children that want to have friends. This cannot be prevented fully, and that is why you must do all you can to prevent that which can be prevented. Be sure the school is aware of the problem of bullying, and be clear that the only acceptable amount of abuse is NONE. You may have to get rather belligerent with the school to get them to stop the bullying. Through elementary school, it is reasonable to expect that bullying will be stopped. It’s much harder to prevent in the multi-class middle school environment.

Middle school is the worst. My mother tried to help me here, but she lacked the experience I now have. In my school district, fighting back was just as unacceptable as attacking someone, and I was taught to respect the rules. I did, but the other kids did not. As much as you may not want to hear it, your child should be allowed to disregard the rule against fighting back if he is physically attacked. If your child is attacked, it is a sign that the school is not doing its job in preventing bullying, so the child that fights back is not the one at fault– the school is at fault. If the school suspends your child for legitimately defending himself, use the day off to take him to get some ice cream. Your child’s self-worth is more valuable than some arbitrary rule. The bullying in seventh grade is brutal, and it is unrelenting. I am not really sure if it is possible to stop all of the abuse in the middle school years, and if you are at all up to the task, I strongly recommend home schooling from the first year of middle school through the end of the first year of high school. Those are the most abusive years, by far, and the level of brutality and intentional terrorism of which middle school-age children are capable is astounding. In my case, this abuse destroyed my self-image, and I suffered depression that lingered eight years after I graduated from high school.

My mother did the best she could in middle school, but it was not enough, which we both know now by experience. She told me that if I was attacked or threatened, I should go tell an authority figure. That only made it worse, and after more complaints to my mother resulting in the same advice, I quit telling her. I suppose she thought that the problem cleared up, but it didn’t. I suffered in silence for years, with only the occasional obvious bruise or food stain on my clothes giving testament to the abuse of the day. Be sure to tell your child to tell you ALL of the bad things that were done to him, and be sure he understands that it is OK, and that it is NOT his fault. He may be embarrassed, and may not want to tell you. Keep in mind that autistic kids are generally stoic, and the actual abuse is probably a lot worse than you think from hearing the child’s reports.

All in all, my mother did a great job of raising a strange kid. Before I knew I was autistic, I used to think she did a rather mediocre job, but as I have learned about the things parents do to their autistic children, I have become very appreciative that my mother accepted my weirdness and did not try to make me into a normal child. Too many parents and professionals try to do this to autistic kids. Take my word for it: your autistic child is not normal, nor will he ever be. There is no recovery from autism– the stories you hear about that are not as they appear. Temple Grandin claimed to be a  recovered autistic when she wrote her autobiographical book Emergence: Labeled Autistic, but in her next book, Thinking in Pictures, published nine years later, she simply refers to herself as autistic. She has improved in her ability to function, but she realized that she was still autistic, and that she always would be. Recovery from autism is a wishful-thinking fantasy borne of denial. That does not mean that there is no hope for a bright future! If your child is allowed to grow up appreciating himself, his differences, and is given the tools to live in this strange world, WITHOUT trying to cure or remove the autism (which won’t cure the autism, but will instead promote self-hatred), he can grow up and do things the doctor said would be impossible. You may be really surprised at how much is possible if the child never gets the idea that he “can’t.” Can’t is a horrible word, perhaps one of the most disabling words in the English language. Don’t concentrate on what your child cannot do; concentrate on what he can do, and build on that every chance you get. As you do, “can’t” will get smaller and smaller with the  passing of each day

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