Aspieadvocate

I Feel for You

2011-07-29T17:56:00.000-07:00

I feel sorry for those who think autistics have no ability to empathize. In my case at least, Apsperger’s left me too vulnerable to the emotions of others.

When I was a little girl, I smiled until my face hurt. I was nowhere near as delighted as the constant smile seemed to indicate, but I was not miserable either. The unrelenting smile was, I now believe, the product of rigid autistic thinking had led me to a false conclusion that like everything else in my world, there was a correct and incorrect path. Blocks must be stacked in a certain formation, there were right and wrong answers to every imaginable question. By that admittedly skewed, reasoning , the same principal must have applied to emotion. There was one correct emotion: happiness, which was always expressed with a smile.

Other emotions existed, that was irrefutable. Whatever other explanation could there be for tears or frowns? I avoided wearing such expressions on my own face though, because they and the emotions they represented were obviously incorrect. However I couldn’t seem to control the emotions of others, which was maddening , like sudden mind-reading abilities in the science fiction stories to which I was always so drawn, terrifying telepathy that inevitably landed protagonists in the equivalent of their planets’ rubber rooms.

I would not describe this way of thinking as healthy. I wasn't simply irked when an adult or another child would refuse to comply with my orders to smile, I was furious and terrified and would not, could not, calm down until they did. What complicated matters more then, and continues to complicate them to this day is my impaired ability to read facial expressions and body language. Like many autistic people, I’m capable of seeing macro-expressions , broad smiles, uncontrollable tooth-grinding rage, but more subtle expressions remain a mystery to me. I still can’t tell if the not-entirely happy person next to me is mourning the loss of a beloved friend or the loss of a nail tip they just had manicured. Although I’m better equipped to handle all the input as an adult than I was as a child, between the sensory overload of loud music, bright lights, forced conversation (especially that autistic bête noir, the inescapable natter of small talk.) my sensory processing abilities are already taxed. On top of all that I often feel people feeling at me. Whether they notice my presence or not, I notice theirs, and my ability to process their emotions, the origin and nature of which I still have difficulty interpreting, causes me distress.

It’s a mistake to confuse an inability to sense with an inability to care.To the extent that I am able to resonate with other people’s emotions, I care intently. Further I am aware that I am not aware of what people are feeling and compensate by the seemingly simple but actually complex method of inquiring.

I don’t like to think about that part of my life. I have never written about it. But I recently had a conversation with one of son’s teachers that sent chills down my spine. She told me about a little girl with the same diagnosis as mine, Aspergers. Like me she has always been verbal, but when someone she cares for does not produce a smile that lives up to her expectations she will crawl up on their lap and try to force their lips into what she considers a properly happy expression. I remember doing that .

My autistic son is minimally verbal, but there is no doubt in my mind that his empathy is as powerful of as that of those who can articulate it. He’s been using what words he has to ask me if our cats are happy. He’s been asking his teachers if a particularly close friend of his in school is happy. Not curiously or occasionally, but frantically and repetitively. No amount of reassurance seems to soothe him for more than a moment when he gets into one of these loops. Medication helps. We also have high hopes for social stories, and since we want to teach him that he has some power to influence others positively we make suggestions about concrete things he can do to help. Finally, we emphasize the transitory nature of emotion. I suspect the notion that whatever is going on in a given moment will last forever is a common autistic fear. I have it too. So when he seems to be frightened by his own reactions to others’ emotions, I stroke his hair and I remind him that smiles and frowns are like rain and sunshine. Neither lasts forever. Just when you think the weather cannot ever change, it does.

I have faith in in my son to resolve this confusion just as he has conquered other perplexing aspects of a world not tailored to his needs, but he’ll need help. He needs to learn that he does have power, not to change the weather of people’s moods, but to react to them in a compassionate yet not all-consuming way. I am working on that skill myself, very slowly improving, but I believe his prospects are better than mine. What I do know from my own experience in this realm, and what I strongly believe when I observe him, is that pushing for greater empathy in an already hyper-empathetic child will not help and might even cause more distress and confusion for him. Empathy he’s got. Boundaries are what he needs. Shoring up some kind of emotional self-defense in one of the most caring children I can imagine, that’s what all of us who love him will spend the next few years doing. As parenting tasks go, I think it beats the hell out of trying to foment empathy where an exhausting abundance already exists.

Heeding Autism's Aesop

2011-06-15T14:14:00.000-07:00

Anyone who has ever tapped on the window of, but cannot open the door to the world of normalcy (wherever that is) owes it to themselves to buy Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers by the luminously wise John Elder Robison, author of Look Me in the Eye, a 2007 memoir that well earned its place on the New York Times bestseller list.

I’m on the autism spectrum, myself. Like Mr. Robison I was diagnosed in my forties, which means I was born long before Aspergers was generally recognized as a diagnosis, too early for effective intervention. For me Be Different, the follow-up to Mr Robison’s ground-breaking memoir Look Me in the Eye offers more a confirmation than a revelation.

Sometimes I recognized myself and laughed. Some sections, like Managing Sensory Overload, figuratively hit the perfect note with me, when Mr. Robison describes his technique of isolating the music of one instrument at a time to avoid being overwhelmed by the sensory stimulation of an entire orchestra. (The only downside, of course, is when the one musician commanding your attention at the moment plays or sings off key. Ouch.)

Sometimes I recognized myself and felt my ears burning. In the (Not) Reading People chapter I found myself nodding vigorously at Mr. Robison’s memory of his inability to read any but the most exaggerated and frequently repeated facial expressions, and the confusion that deficit caused. If, as I had been told, a smile signaled friendship then I wondered, like Mr. Robison apparently did, how a person’s threatening actions could so contradict their friendly facial expression? Bullies often smile as they are bullying, so if another child came towards me smiling, it was hard for me to predict whether they were about to say hello or push me into the dirt. Eventually, I learned techniques similar to Mr. Robison’s to compensate, but my epiphanies seemed to come later in my life than they did in his. I’m relieved that he’s quicker on the uptake than me, and better at articulating the rules it took me so long to learn – and that he is teaching what are no less than survival tactics to the current generation of autistic people, which includes my own son.

Be Different presents a new opportunity to get acquainted with this author, in a book that’s every bit as compelling as his first. Yet here the tone is…Different. Like his memoir the incandescent writing is deeply personal, accessible to anyone who has ever felt like an outsider for any reason. But this time around, Mr. Robison acts as a kind of Autistic Aesop; he writes less a scorching memoir and more a series of directly illustrative biographical vignettes. There is a clear value here of the (literally) underlined morals of the stories to those of us insensible to the subtlety of, well, subtlety. If you’re on the autism spectrum or parenting a child on the spectrum, Be Different functions as a manual, just as its sub-title promises.

If you have no connection to the autism community, then I’d argue that you need a copy of this book even more than those among us who do. The diagnosis rate is rising so quickly that if you don’t already know someone autistic, you will soon. Bosses, shopkeepers, bus drivers, co-workers, and neighbors will all benefit from an heads-up to understanding that quirky person who will at some point undoubtedly pop up in their lives -- not wanting to offend, but somehow often offending; not looking to take offense but somehow taking it anyway. On the spectrum or off, it's hard to quell hurt feelings, but using Be Different as a guidebook we can all navigate through misunderstandings to compassionate clarity.

There are at least two generations of autistic people like the author and me, folks who never got a lick of intervention. All of us who often swear we were born on the wrong planet are trying to meet the non-autistic population halfway, but we need the help of non-autistic people to make a place for ourselves in this world and a meaningful contribution to it. The insight we all need, whether we’re autistic or not, can start the minute we start heeding the advice of one of autism’s most effective spokespeople.

You can find Be Different in any store or site that sells books. My website doesn’t sell books, so be assured, I’m not making a dime from this sales pitch. I just think Be Different will make a difference in your life.

Must See TV

2011-04-29T08:49:00.000-07:00

Televised Series Exploring Critical Issues Presents “Autism and Asperger’s Syndrome”

Don't Keep This Wish a Secret!!

2011-04-07T14:52:00.000-07:00

Call it a dream for a better future, or call it just plain old educational advocacy: My fellow New Yorkers repeat after me: The next chancellor will be better. If we all say it together enough, as loudly and publicly as we can, there's a chance we can make this wish come true.

Cathie Black asked to step down as NYC Schools Chancellor; Deputy Mayor Dennis Walcott to take post

George Takei on My Mind.

2011-03-23T12:51:00.001-07:00

I owe many of my social skills to Japan. Click on the link below to find out why.

http://thinkingautismguide.blogspot.com/

NYC Movies and shows for kids on the autism spectrum.

2011-03-13T19:53:00.001-07:00

Movies and shows for kids on the autism spectrum.

A series of screenings of movies and live performances tailored to the needs of autistic children. I have an autistic son myself and while I applaud AMC's Sensory Screenings I feel that most autistic children do not have sensory problems with the movie theater environment (as long as the sound isn't POUNDING and things aren't PITCH BLACK).

What our children mostly need is a "No Shushing" environment where talking, vocal outbursts and the need to get up and move are respected. I have arranged for the SoHo Gallery for Digital Art, 138 Sullivan St, New York, NY 10012 to donate its screening facilities on Saturday afternoons to this project.

http://www.meetup.com/Spectrumshows

We & Our Kids Are Everywhere...

2011-03-13T09:16:00.000-07:00

The Komo Centre for Understanding Autism was established in 2006 by Elizabeth Kaleeba, the parent of an Autistic child.The centre was started to provide education, care and support for children and families affected by ASD (Autism Spectrum Disorder). It is the first provision of this kind in Uganda.

Please visit their site to see how you can help their vital work:

http://www.komocentre.org/pageID_10288582.html

If you are on Facebook. please Friend and support another good resource,

Autismcentre Uganda

Check out their upcoming fundraiser at http://www.facebook.com/event.php?eid=190663840972163

Panel: Raising Children of the Autism Spectrum

2011-03-03T16:08:00.000-08:00

I'm really looking forward to speaking on this panel at the New York Hall of Science on

Sunday, April 10, 2 pm
Free with Registration

. I hope you'll join us.

Panel: Raising Children of the Autism Spectrum

Autistic Children Help at Coffee Shop in N.J. School - NYTimes.com

2011-02-22T16:30:00.000-08:00

Autistic Children Help at Coffee Shop in N.J. School - NYTimes.com

Georgia on My Mind

2011-02-20T14:41:00.000-08:00

I'd go myself, if I weren't already heading to the COPAA conference in San Antonio earlier in the month.(Check that out at this link http://www.copaa.org/conference-training/)

Only so often the Mom of a rambunctious eight-year-old can travel

ASAGA - Autism Society of America - GA Chapter

So Far, Not So Good...

2011-02-14T12:54:00.000-08:00

I truly like to look for the best in people, and I'm from a publishing background myself, which gives me something in common with Cathie Black. I want to give her a chance. Really. No, she doesn't have what I'd normally look for on a resume for her pending position, but then again (I tell myself when I'm in a charitable mood) who better to promote literacy than someone who has spent her career bringing books into creation?

But this "joke," well, I hope this does not represent her at her best, as a professional or as a person. If we are to hold onto high expectations for our kids, special needs or not, we must feel secure in high expectations for our schools. And as hard as I try, my already uneasy hopes for Cathie Black's success are slipping. Please Ms. Black, nothing would make me happier than your proving me wrong.

Parents not laughing at Schools Chancellor Cathie Black's 'birth control' overcrowding joke

Facts Are Better Than Fear

2011-02-01T15:13:00.000-08:00

This is the kind of interview that makes me proud to be one of the editors of this blog.

The Thinking Person's Guide to Autism

An Offer I Couldn't Refuse

2011-01-11T17:40:00.000-08:00

I am so honored to be included in the company of these august personages :)

The Thinking Person's Guide to Autism

COPAA Annual Conference | Copaa

2011-01-08T07:06:00.000-08:00

COPAA Annual Conference | Copaa

I really can't say enough good stuff about COPAA. As a parent and as an advocate, these folks have been one of my greatest resources for all things special education for years now. Yes, it costs a little money to join and maintain your membership, but you get so much for about what it costs to buy a good pair of shoes. True, COPAA membership hasn't helped with my foot problems, but they've always got my back, and I've never had a pair of shoes that gave such good advice, so quickly, and offered a library full of legal citations to boot. Sorry, I really tried to resist that pun, but my sense of whimsy overcame me. If you want to scold me for that or any of my other lousy jokes, meet me at the COPAA Annual Conference from March 3-6 at the Westin Riverwalk hotel in sunny San Antonio, TX.

Dominic's House on ADVANCE for Occupational Therapy Practitioners

2010-12-30T06:44:00.000-08:00

Dominic's House on ADVANCE for Occupational Therapy Practitioners

Daniel Epstein-Local Champion

2010-12-22T13:46:00.000-08:00

On December 21 2010 a handsome young man named Daniel Epstein stepped up onto a podium at the Surrogate Court to accept the Be A Champion Essay Contest award from the New York City Department of Education, the New York Jets, and Lime Connect. Here is his prize-winning essay.

"My name is Daniel Epstein. I am 11 years old and I have autism. Everyday my life is filled with challenges and new experiences. My most challenging goal is to move up and out of my special education class. I would like to go to regular education class. My dream is to graduate from the high school of Art and Design and then attend the Pratt institute. I would focus on the digital arts program. My ultimate goal is to graduate with my bachelor of fine arts and to become a graphic artist.

My determination and focus will help me achieve my goals . My future will be bright and successful. I can speak to others who have autism just like me and other developmental disabilities. With hard work, focus and determination, anything is possible. All a person needs is a dream and a will to make that dream become a reality."

What Daniel said, my friends. With the support of loving family, friends, and teachers, nothing will stop this guy. So next time you run into someone who paints a grim picture of your child's future, re-read Daniel's essay and remember that perseveration is just another word for perseverance. That's the quality from which all bright futures spring, for all of our kids whether they have disabilities or not. Mazel Tov, Daniel.

Spectrumy: Text 2 Show Your Support 4 Autism Workshops

2010-12-17T14:49:00.000-08:00

Spectrumy: Text 2 Show Your Support 4 Autism Workshops

The Case for a Continuum | 5 Minutes for Special Needs

2010-12-15T09:35:00.000-08:00

Thank you, Heather M. for reminding us that an appropriate placement for our kids is more important than who they attend class with.

The Case for a Continuum | 5 Minutes for Special Needs

Tips for giving assistive technology gifts | Accessible Insights Blog

2010-12-14T07:12:00.000-08:00

This is not kid-specific, but I think the advice applies to anyone thinking of giving appropriate technology to special needs children.

Tips for giving assistive technology gifts | Accessible Insights Blog

AbleData: Products

2010-12-11T18:52:00.000-08:00

This is a resource you can't afford to miss AbleData: Product

I'm an Embarrassment

2010-12-10T16:50:00.000-08:00

I don't have much in the way of shame. I've learned enough social skills over the years to not to embarrass friends, family, or even complete strangers as often as I used to, but my Inappropriate Meter isn't entirely consistent. So hang around with me for a moment or for years and risk blushing. Sometimes people do bad things, so I suppose I can justify my tactless exposure of their misdeeds as a kind of karmic justice. Then again, sometimes people make innocent mistakes and I make everything worse by pointing out their faux pas. I try my best not to be the source of hurt, and try to have faith that most adults are able to forgive whatever role is I play in their discomfort. But I worry about embarrassing kids, in particular my autistic son.

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it's the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I'm making decisions about him that should really be his to make. Except even if he's made different decisions about disclosure than I have, he's not (yet) verbal enough to tell anyone.

In some ways he's not much different from many kids his age. He loves sports and rough-and-tumble games. There's probably a sensory component to his style of play, and I'm thrilled he wants to interact with others. He never rough-houses in anger, so it's pretty clear that this is not about aggression. But his motivation doesn't matter to kids on the playground who don't have the same idea of fun, and it certainly doesn't matter to their parents. When he plays rough and doesn't understand his playmate's negative reaction, I have to intercede, no question about it. Lately, though, I keep wondering how to do so in a way that's respectful to everyone involved.

Time is oddly reluctant to pause at these moments, and I'm not at my most articulate when flustered, so what needs to be said often goes unexplained. There's so much to say: that I too believe play should be consensual all around; that I know my son means no harm; that autism can complicate even the most simple interactions, but that doesn't make my son or me unrelentingly tragic figures; that my son has a right to privacy about his autism, but at the same time others have a right to an explanation of the invasion of their personal space. Meanwhile there are frowning adults to placate, crying children to soothe, and, um lets just say not entirely constructive behaviors to correct. I'm not much of a multitasker under any circumstances, so at these moments it's not just Time that freezes. I freeze too. After I thaw, the second-guessing of how I handled the situation begins, and that never seems to end.

In some ways I'm not different from many parents. This ambivalent relationship I have with the passage of time, for example: I know we all long for simpler days that never actually existed. Every age has its challenges. But then again some moments seem to last forever, teething, potty training, homework strikes, meltdowns all those inevitables of childhood that are exaggerated and extended for special needs children. I confess I often lose faith in the doctrine of This Too Shall Pass.

The truth is, my crystal ball never really worked too well. I can't reliably predict what challenges my son will face next year this time, or how I'll handle them. The best I can hope for is that if I'm not already embarrassing my son, I soon will be the way all parents seem destined to embarrass their children. I really hope he recognizes even now how embarrassing I am, but that he won't respond by silently resenting me his whole life for violating his privacy. If instead, when he reaches his teens, he never stops rolling his eyes at me and can announce to the world in loud strong voice and perhaps in his very own blog, every single bad decision I've ever made in parenting him, then I'm probably on solid ground.

As a parent, it's my job to embarrass my child, setting all kinds of boundaries, misunderstanding his feelings, and generally elevating dorkiness to an art form the way many of us on the spectrum do. Yup, I'm hoping, I'm actually counting on embarrassing my son. I just pray it's for all the right reasons.

Brain Development: Sensory, Physical, Behavioral and Nutritional Information: Building Fine Motor Skills

2010-12-08T18:21:00.000-08:00

Brain Development: Sensory, Physical, Behavioral and Nutritional Information: Building Fine Motor Skills

Advocacy 101: How to Write an Effective Letter

2010-12-05T15:40:00.000-08:00

As a Special Education advocate, I write letters to schools and districts all the time on my clients' behalf. G-d forbid, I should interfere with the income stream all this letter-writing generates (Baby needs a new I-Pad, after all), but this piece from the ever-wise The Thinking Person's Guide to Autism is just too good to keep to myself (and the other bazillion people who've probably read and admired it before I found it.)

Kudos to the author, Caitlin Wray. You can find her at www.welcome-to-normal.com

-Advocacy 101: How to Write an Effective Letter

Gifts That Give - For Women, Gifts That Give Back to Women

2010-12-05T07:42:00.000-08:00

Many thanks to Linda Lowen for these gift-giving tips.

Gifts That Give - For Women, Gifts That Give Back to Women

Carol Greenburg New East Coast Director for Autism Women's Network.....

2010-12-03T10:56:00.003-08:00

9/12/2010

For Immediate Release:

Contact: Sharon da Vanport

T: 888 650-2290

E: sharon@autismwomensnetwork.org

Carol Greenburg Joins AWN

As East Coast Regional Director

The Autism Women's Network is pleased to announce that Carol Greenburg of Brooklyn Special Needs Consulting has accepted the position of East Coast Regional Director. Her duties in her region will include developing new AWN projects, consulting on on-going programs and overseeing outreach and communication.

Ms. Greenburg, who will continue as Executive Director of Brooklyn Special Needs Consulting, a New York City based educational advocacy and consulting company, is the mother of a movie-star handsome, autistic seven-year-old and herself has Asperger’s Syndrome, an Autism Spectrum Disorder. A frequent speaker at area universities, community organizations and parent support groups, Ms. Greenburg is also an advocate member of the Council of Parent Attorneys and Advocates.

You can follow Ms. Greenburg on Twitter at Aspieadvocate . For more information about her work, please see her company website, www.bklynsnc.com .

Autism Women's Network (www.autismwomensnetwork.com) is dedicated to providing effective supports to autistic females of all ages through community, advocacy, and resources.

Love Shattering Those Myths!

2010-12-03T10:54:00.001-08:00

Blogher10: Informative Inspiring and Fun

Always on the lookout for myths to stomp on.

http://communities.washingtontimes.com/neighborhood/autism-unexpected/2010/aug/13/blogging-autism-and-shattering-myths-blogher-2010/

Are You Surprised that Shooting Off My Mouth Again...?

2010-12-03T10:51:00.001-08:00

...It is, after all, a day that ends in "y".

Here I go again, spouting my opinions and bragging about my wunderkind.

http://networkedblogs.com/5NHrB

I-Pad Accessible Goodies

2010-12-03T10:47:00.001-08:00

Adorable child not included, please subsititute your own.

iPad assistive technology/Disability Round-Uphttp://tinyurl.com/2vkkeqv

I Aways Have an Opinion....

2010-12-03T10:44:00.000-08:00

Interview with Aspieadvocate

Check out this two-part interview with me that just popped up on the Autism Learning Felt site! Thanks to for the press.
http://www.autismlearningfelt.com/2010/04/asperger-adult-mom-with-autistic-child.html

Think it's hard to get services in North America? Try Oman...

2010-12-03T10:24:00.000-08:00

Sponsor a child with a disability in Oman

There are no ethnic, religious, racial or national or boundaries on disability. As hard as it is for us to get services for our kids in Brooklyn, the barriers to help for children with disabilities elsewhere sometimes seem insurmountable. The good news is, you can help, right here, right now!.Stand in solidarity with other parents who has more in common with you than you might imagine.
http://www.clc-om.com/

Just autistic is fine, thank you.

2010-12-03T09:55:00.000-08:00

A while back I wrote a piece referring to an an interview I did with www.greatschools.net about disability and bullying. All the recent controversy about the upcoming DSM V and the sunset of terms like PDD-NOS and Aspergers brings that peice to mind. Personally, I don't much care how people refer to my status on the spectrum, I usually say I'm an Aspie, which is an abbreviation for my diagnosis, "Asperger's Syndrome," which is a form of, guess what--Autism. That makes me autistic, no getting away from it. Just like my severly language delayed autistic son. I'm not saying that our lives are similar. No doubt about it, his challanges navigating a language-saturated world outweigh mine, and are not balanced out by all the services he gets to which I had no access. But it doesn't mean our shared condition is seperated by a wide a gulf as the mutiple terms imply.

Anyway, forgive the recycling, but here's that piece:

As the parent of a kid with a disability, usually I can identify with other parents in the same boat. Once though, there was this guy--I'm sure he's a decent sort and didn't mean to--but oh brother, did he tick me off! We were watching our kids, both autistic, participate in an adaptive sports program. We were bragging goodnaturedly to one another about our boys' athletic prowess, when he recalled an earlier time when his nonverbal boy was targeted by bullies. I empathized with this father's pained helplessness as he described his son's hardships. I agreed with his observation that kids can be cruel. But my sympathy for the father evaporated when he half-smiled, shrugged and said that that was simply the way of things. Kids like ours, who have differences, will always be picked on by "normal" kids. He picked on "dfferent" kids when he was a child, and then said he assumed that I did too.

I did not. Like many adults with Asperger's syndrome, I am now fairly indistinguishable from adults who do not share my condition, but my childhood was peppered, no it was awash, with mean-spirited Kids-Being-Kids and their fellow travelers. The gang leaders got a kick out of kicking me, calling me names, just generally being the bullies they seemed destined to be, but the kids on the sidelines, the ones who didn't join in, but were too afraid to opt out, those were the ones who made the dynamic possible. Real bullies love and need an audience.

Don't worry, I didn't lecture this father, obviously his son's difficulties had taught him something about empathy. But I didn't engage with him any further, because there was no way he would ever understand that an well-spoken autistic adult like me STILL has far more in common with the nonverbal son than with the former-bully father. I did, however, introduce my little boy, who has a bit language, to this father's devestatingly handsome teen-aged son. I described the young man's accomplishments, telling my son to watch and learn as much as he could. My son followed his new hero around for hours. That's the way this young man shoud have been treated all of his life, and I hope he will be treated that way for the rest of it.

Lawyers Fighting the Good Fight

2010-12-03T09:49:00.000-08:00

High-profile Cases that Can Help Us All

As a lay advocate, I recognize that there are some special education access problems that cannot be resolved in an IEP meeting. Although the lawyers at California-based Disability Rights Advocates may not be able to represent your child in your state, they look like a great resource for anyone who cares about access to education and fair testing.
http://www.dralegal.org/investigations/lsat-sat.php

Good Cop

2010-12-03T09:46:00.000-08:00

An Encounter with New York's Finest

I could have kicked myself for not getting the name of the wonderful New York City police officer who pulled me over the other night. I'm a safe,driver for the most part, but Asperger's sometimes interfere with my perceptions whether I'm standing still or navigating a dark road. It was rainy, I was distracted, and if I can't even read body language... Well, I was as I so often am, stumped. Even at my best I'm sometimes unclear as to why people honk their horns at me, so when the cop driving behind me started waving his hands I didn't know if wanted me to get out of his way or whether he was trying to pull me over. Turns out it was the latter. I know this because he used his loudspeaker to announce to all of Soho that I was to put my car in Park immediately. You'd think the police lights, would have cued me in sooner, but the sensory overload just made me freeze, and we aspies don't pick up on subtle hints. Like sirens.

Anyway, I figured he'd want to see my license, but I was too scared to move. Eventually however after he pounded on my passenger side window and I managed to lower it, I knew I needed some answer to a gruffly phrased "Is there a problem, Ma'am?" Very slowly, I handed him the emergency autism card I always carry and asked if he would be willing to look at it before we spoke any further.

Autism safety expert Dennis Debbaudt says that autistic people are SEVEN times more likely than non-autistic people to have encounters with law enforcement. Luckily, this officer seems to be one of those law enforcement officials who had experience with people like me. Maybe he has an autistic family member, or maybe the NYPD just does REALLY good staff training. Either way, I was so impressed by his whole demeanor after he took the time to look at my card.

He asked in a calm, slow voice if he could approach the driver's side of the car so that we could hear each other better. I nodded. He then said "I'm going to ask you some questions. If there's anything you don't understand, just tell me and I'll go over it again." I said yes, produced my licence on request and answered his very clearly phrased questions. He asked me if I was aware I had been straddling two lanes and said he had suspected I was a drunk driver. A few years ago, I'm afraid I wouldn't have had the social sense to repress laughter, but by now I have acquired the social skills to do so. As a lifelong tea-totler, that particular accusation rarely comes my way.He then warmly greeted my quiet 7-year-old sitting in a car seat. The officer seemed unsurprised that my son didn't answer; it's possible he knew how likely it is for a parent on the autism spectrum to have an autistic child. He asked politely if I felt I could get us home safely. Thanks largely to his courtesy and professionalism I said I could. And I did.

This, my friends, is what I call true Autism Awareness. This encounter was not about frightening anyone into anthropomophizing a neurolgical condition into an evil kidnapper hell-bent on stealing everything from me or my son that makes us human. This was about a decent person, a credit to his profession, who needed only the simplest of explanations to treat a person with a disability with the respect that every human being deserves.

Much credit should be heaped on this sadly annonymous individual and the entire police department he represents, but there is a larger issue here. We all, people with and without disabilities, must always be prepared to meet each other halfway. I carry an autism emergency card not as a convenience but as a public responsibility. It is my duty to reach out and communicate as best I can even when speech fails me. It is also always my responsibility to model this behavior for my autistic child. The officer did the right thing by stopping me to inform me I was endangering myself and others. And then he did the right thing again by drawing upon his training and experience to understand a person whose actions at first must have seemed reckless.

Not just at the holiday season, but at all times may we all treat each other with such respect and compassion.

Ask Me Anything!

2010-12-03T09:44:00.000-08:00

Easter Seals did a particularly good Myth vs.Fact piece on disability recently, My favorite part was the exhortation in Myth #8 to encourage children to ask questions. Aspergers can be invisible, so I don't have a lot of kids coming up to me in shopping malls asking why I'm covering my ears. (I really wish they'd turn the music down in women's clothing stores.) I certainly don't advocate stopping people with disabilities in the street to inquire about the intimate details of their lives. But since I do a lot of public speaking, I am in a sense asking for, well, ASKING!

So there I am, trying to help people organize their paperwork or interact with the school district to get services for their kids with disabilities, and the room suddenly goes quiet when someone asks a question the scares the rest of the audience: "What do you think caused your autism?," "Your kid is speech-delayed, you never were, do you seriously think he can have a quality of life anything like yours?" Lively discussion always ensues, and woe to the casual questioner who thinks they can escape the FULL airing of my opinion. Now, I can't vouch for my audience, and I admit sometimes I go home feeling pretty tired, but my feelings are not easily hurt. (Not to say I'm completely impossible to offend, but my social impairments often send insults and sarcasm flying over my head.) How could any non-autistic person expect to understand an autistic frame of reference they don't share if they don't just ask? So they do, and I answer the best I can. In the long run, no one really gets hurt, and sometimes someone even gets help, if merely in the form of better understanding.

http://ow.ly/wPWU

No such thing as a bad question.

Neurology Now!

2010-12-03T09:42:00.000-08:00

Aspieadvocate Quoted in Current Issue

An article on Early Intervention in Autism in the current issue of Neurology Now Magazine quotes me generously. By all means take a look on their site, www.neurologynow.com. My only quibble? My husband John and BSNC's Ben Fox should get credit for the development of Facilitated Social Inclusion (FSI). Our company, Brooklyn Special Needs Consulting offers professional training in FSI, which I recommend not only from a professional standpoint, but also as the mom of 7-year-old social butterfly with autism, who owes his now impressive social life to this program.
Many thanks to author Debra Gordon, MS for giving me such a prestigious platform and spreading the good word about Facilitated Social Inclusion.
Here's the part about my family and me:

"Carol Greenburg, the mother of a 7-year-old son with autism as well as a special education lay advocate who helps parents get the services their kids need, developed a similar program she calls facilitated social inclusion. It involves training normally developing children to teach the autistic child how to play. It is one of several approaches she uses with her son, Arren, who was diagnosed at age 3-and-a-half. Her son, who used to barely respond to request to play from other children, now initiates play. Instead of the social isolation most autistic children experience, Arren attends parties and play dates with both autistic and normally developing children.

Arren's parents, who live in Brooklyn, NY, began working with him in a home-based program until they found a private school, where he's been ever since. There, he receives one-on-one behavioral intervention along with home therapy. Today, the boy who used to only talk in memorized lines from his favorite TV show can ask for what he wants, follow directions, answer questions, and tell his mom where it hurts when he's sick. We started seeing changes almost immediately once therapy began, says Greenburg. He will continue at the school and with the therapy, says Greenburg, as long as he needs and not a day longer.

THE COST TOP

Carol Greenburg felt the services her local school district offered for her autistic son were inadequate. She and her husband paid the $85,000-a-year tuition for their son's private school and sued the school board for reimbursement. While they did receive some reimbursement, many parents don't. And they can't turn to their health insurance for help; according to the advocacy group Autism Speaks, just 14 states require insurers to cover medically necessary, evidence-based autism therapies. In the other states, the group says, insurers specifically exclude behavioral therapies from policies. The group is pushing for a federal law that would supersede state laws and require insurance companies to cover such therapies.

No health care reform is adequate without recognition of autism, says Greenburg. It's a medical/neurological condition and the fact that it's not covered by insurance is a disgrace.".

Kids Will be Kids?

2010-12-03T09:39:00.001-08:00

An interview I did on bullying for the award-winning website www.greatschools.net, brought up some surprisingly recent memories for me. Here's the article:

Bully Proof Your Kid

http://www.greatschools.net/parenting/bullying/bullying-and-kids-with-LD.gs?content=1599

As the parent of a kid with a disability, usually I can identify with other parents in the same boat. Once though, there was this guy--I'm sure he's a decent sort and didn't mean to--but oh brother, did he tick me off! We were watching our kids, both of whom have autism, participate in an adaptive sports program. We were bragging goodnaturedly to one another about our boys' athletic prowess, when he recalled an earlier time when his nonverbal boy was targeted by bullies. I empathized with this father's pained helplessness as he described his son's hardships. I agreed with his observation that kids can be cruel. But my sympathy for the father evaporated when he half-smiled, shrugged and said that that was simply the way of things. Kids like ours, who have differences, will always be picked on by "normal" kids. He picked on "dfferent" kids when he was a child, and then said he assumed that I did too.

Whose Reality is it, Anyway?

2010-12-03T09:36:00.000-08:00

First read this article in yesterday's NY Times parenting blog http://bit.ly/fSb5S
Then look at the comment below, which was what I posted in reply:

I read the news today, oh boy.

I am an adult with Asperger's Syndrome. I am also the mother of a severely language-delayed autistic six-year-old. No one's life is perfect, certainly not mine or my son's, but the mother who described the nightmare of raising an a child with Aspergers syndrome did not resonate with me on any level at all.

Although my own autism sometimes makes it difficult for me to understand other people's perspective, I can still see that this mother and I have something in common. I too have days filled with frustration., but the source of my frustration seems qualitatively and quantitatively different.

Appropriate services weren't available at all during my childhood, and even now they are hard to come by, and expensive. That is frustrating. Typically developing people don't always understand my son's perspective or even mine, though I can explain my worldview and he can't verbalize his yet. That's frustrating too.

Yes, overall, theres no doubt that some days I feel that it's just not fair--not that we have a lifelong neurological condition that presents many challanges--but that we are neurologically outnumbered ,and the nonautistic majority rules. That's frustrating; life is hard for anyone who stands on the outside looking in.

But nightmarish? No. My son and I are surrounded by people who love us. And everytime we encounter someone who doesn't understand, we have an opportunity to help them understand. In fact I know several people who have decided to persue a career teaching autistic children after simply meeting my son. I am inexpressibly proud of him for thatI, though I'm not sure he understands the impact his life has already had. Both our lives have great purpose for that reason, I certainly feel blessed.

I guess it all depends on your point of view, one mother's "sugar-coated words" can be another mother's naturally sweet reality.

Carol Greenburg

Aspieadvocate on Twitter

Please check out my company Facebook page, Brooklyn Special Needs Consulting

Yell at My Kid, You Get a Time Out

2010-12-03T09:31:00.001-08:00

On Twittermoms this morning, I was following a lively discussion about random adults who yell at kids in public. Since I have a lot of unfortunate experience in this area, I had a lot to say about the subject. My six-year-old is often corrected by adults he's never met. Generally there's no scuffle because most adults are civilized and my son is usually pretty well behaved. However even when he does something he shouldn't, I don't feel he deserves to be screamed at by any out-of-control adult including me. My son is autistic. On the rare occasions that he does upset another child or adult, it is most often because he doesn't understand what constitutes proper behavior in a given situation.

Recently, he wanted to play with a younger child at the playground. He's working very hard on learning how to engage other kids appropriately, but his minimal language skills, difficulty with eye-contact and generally impaired social skills make this very hard for him right now. He shoved the other child to get his attention, and the other child, and quite understandably started crying. I was right there, I always have to stay close not just to monitor my son's behavior, but to make sure other kids don't mess with him because he can't tell me when someone has hurt him. Unfortunately I still don't always have time to intervene before the other kid's parent starts screaming at my kid. And unfortunately that's just what happened here.

Let me be very clear, my son does not get to push other kids. It doesn't matter what his intention was; his disability does NOT EVER give him a free pass to behave in a socially unacceptable way. He must be corrected, but that has to happen through me, my husband or to whomever we entrust his care. Random adults should refrain from correcting him, not only for moral reasons, but on a practical level they simply won't get through to him no matter how much they reason. Or scream.

So here, as usual, I started with a simple explanation: "He may not understand you. He's autistic." I don't apologize for him. He can do that for himself, and you can be sure I don't let him leave the scene until he does. And as usual the other parent was mortified when they learned they had just been screaming at a disabled child.

This often happens. Nine times out of ten, it's the OTHER adult who wants to run away from my son-- and me-- the minute I intervene,. The adult who had been hollering moments before is suddenly embarrassed by their own actions, maybe rightfully so, but what I need most from them is their continued presence, however uncomfortable that makes them. (I've not had to pin any large men to the floor yet to make them stay, but I'm certainly not above that. ) They don't get to leave until after my son recognizes what he's done wrong, uses his words to apologize and shows me he's learned from the experience. And so in the end, both wrong-doers, whether they meant to misbehave or not, are effectively corrected.

Now, I understand that my son's situation is unusual, but I think there are applications to typically developing children as well. Stay close to your kid in public places and keep an eye and ear out for any interactions they have with other children or other adults. If you can step in smiling before ANYONE starts screaming or crying, you can prevent children's--and adult--tantrums. If you actively take responsibility for your children by correcting them before anyone else gets the chance, or by politely asking how you can help before the crisis escalates, you can quash most brewing storms.

One last point. My son and I always try to leave on a high note. Together we seek out the offended parties and say a friendly goodbye. That way, everyone has at least some good memories of the encounter, and are more likely to behave better next time.

Aspieadvocate
(Carol Greenburg)
Follow me on Twitter and check out my company's Facebook Page, Brooklyn Special Needs Consulting

Great Tool for Parents of Special Needs Kids

2010-12-03T08:27:00.001-08:00

Face it, not all special education advice is equal. We've all been there, well-meaning but ill informed neighbors think they're helping when they give you newspaper clippings about the latest "miracle cure" for your disabled child. Or an experienced general ed teacher insists the approach that works wiith all the other kids will work for yours.
There's a terrific resource on a blog I've just started following http://www.autismisnottheboss.com/. Although the site is autism specific, this particular tool is useful across disabilities.
Using Scorecards to Select Advisors and Caregivers

Who can help you the most?

Full (and inclusive) Service

2010-12-03T08:25:00.001-08:00

Post-graduation plans up in the air? Check out National Inclusion Service Project....

Disability Rights Are Civil Rights

http://serviceandinclusion.org/index.php?page=stories_snip

Can This Kid be Suspended

2010-12-03T08:23:00.000-08:00

http://ideadiscipline.blogspot.com/

Law And Order. And Suspension

Professor Matt Stowe of University of Kansas has come up with a quick and ingenious way to begin investigating what IDEA has to say about suspending disabled students. Anyone who has ever dealt with or even pondered this issue really must check out this site.

Great Tool for Parents of Special Needs Kids

2010-12-03T08:17:00.000-08:00

There's a terrific resource on a blog I've just started following http://www.autismisnottheboss.com/. Although the site is autism specific, this particular tool is useful across disabilities.

Using Scorecards to Select Advisors and Caregivers

Who can help you the most?

2010-12-03T08:15:00.000-08:00

Dances with Horses

Seaside Theraputic Riding in Brooklyn

I balked this morning when the director of my son's theraputic horseback riding program asked me to walk beside a horse ridden by a child with a disability, It's not that horses scare me, they don't. It's just that I was afraid I couldn't do what he was asking me to do, at least not safely. My symptoms of Asperger's syndrome are so subtle that even people who know me well forget that I have this disability.

While my six-year-old autistic son still struggles mightily with language, he has already overcome many of the physical challanges that still frustrate me. Like many people on the autism spectrum, I have poor proprioception. I don't know where my body is in space. I'm a godawful dancer, which is no big deal in and of itself. That's true of many non-autistic people too. But the problem runs deeper when even a casual stroll is a challange. I have to look down to see where my feet are going so I don't fall, which means I can't often look up to see another person coming towards me, much less a telephone pole. Sometimes I feel like the theme song of George of the Jungle should follow me wherever I go. I'm also not the best judge of distance. It's difficult for me to tell how near or far I am from objects, people. Or animals. That makes it hard for me to walk alongside a horse not behind, where it could kick me, or ahead where I could scare it into throwing the rider.

Starting to get the picture here? What complicates the situation even more is the panic I feel getting a request I'm afraid I'll have trouble fulfilling. That's when my ability to sustain eye contact waivers, and I start to lose language. Asperger's Syndrome interferes with my ability to read my conversation partner's facial expression or body language, so I can't tell for sure, but I assume I look pretty dodgy or at least irritated when I'm in this state. My generally invisible disability becomes detectable.

So today was just another day that ends with a "y" . I was hiding my awkwardness, compensating for my deficits, when someone innocently asked me to do something that seemed pretty straightforward to them, but seemed almost impossible for me. This time though, as I felt my eyes wander around the room and heard my normally fluid speech turn into a stammer, I decided to face my fears. I forced an inelegant but still comprehensible explanation out of my mouth, somehow getting across that I was willing, but possibly not able. Still, I was willing.

The volunteers at Seaside Theraputic Riding offered some suggestions and kept an eye on me. My legs are short so it was hard to keep up, but I managed. And yeah, the multitasking of walking and doing anything else is hard for me so I was quiet, hoping the rider could feel the encouragement that I couldn't offer in words. My klutzy dance with a patient horse was adequate. Good enough for the staff of the program, for the rider, and for me.

For once I put all of my focus on the task and had none left to hide my struggle with the task, so I must have looked pretty frazzled by the end. No one laughed. though. In fact, the staff kindly offered to excuse me from future rides . At first I couldn't say anything so I just shook my head violently. Then finally I said "Every day," and pointed towards my son. After I calmed down enough to catch my breath I finished the thought. "Every day, he has to do difficult things. Me too." Clumsy words said in earnest. Every day I expect what must initially seem impossible from my autistic son. The very least I can do for him is expect the same from my autistic self.

Mar 29, 2009 10:17:04 AM

Aspieadvocate

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Panel: Raising Children of the Autism Spectrum

Sunday, April 10, 2 pmFree with Registration

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Brain Development: Sensory, Physical, Behavioral and Nutritional Information: Building Fine Motor Skills

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Think it's hard to get services in North America? Try Oman...

Just autistic is fine, thank you.

Lawyers Fighting the Good Fight

Good Cop

Ask Me Anything!

Neurology Now!

THE COST TOP

Kids Will be Kids?

Whose Reality is it, Anyway?

Yell at My Kid, You Get a Time Out

Great Tool for Parents of Special Needs Kids

Full (and inclusive) Service

Can This Kid be Suspended

Great Tool for Parents of Special Needs Kids

Dances with Horses

Sunday, April 10, 2 pm
Free with Registration