Archive
Autism and Sociability
January 31, 2013
By Lee Passehl
Some people believe that Autistics are antisocial. I am not antisocial, though some people might interpret my behavior as though I am. I like being around people at social events because I am curious, and I like to get to know new people and unwind after a long day. When I am not around people I miss the stimulation talking to my friends, family and certain people I do not know. When I was younger I would go into my room during a big party (even for my own birthday parties). I think I had a sensory overload, but it was a good sensory overload. It was like pigging out on all the candy and chocolate ice cream you can handle. I was so ‘stuffed’ from the stimulation that I had to take a break. I was taking it all in. Another thing is that I also run out of topics to talk about and my brain gets a little overheated from talking for a while and I need a rest.
When I graduated from high school, I wanted to have a graduation party but my parents were worried that I wouldn’t be a good host and I would leave my own party. They were probably right, but I’m more mature now and I know I would do much better these days. Having many people around makes me feel good.
When I was 2-5 years old, my parents used to have great big picnics in the countryside at my house. These were some of the happiest days of my life because I felt so happy in the presence of many people. Even though sometimes I would stay in the house, I felt awesome that so many people were around and I would have liked to have talked to them if I could. I look at friends on Facebook who have many family members over for the holidays with awe.
As a person with autism, I can tell you that I am definitely not antisocial. There are a good number of times I would prefer to be alone. But most of the time I want to be with people and interact with them as much as I can and tell them about my life, discuss what’s happening in the world, and hear what’s going on in their lives.
To generalize that autistic people just want to be alone and by themselves in their own little world is just not right. There are probably many Autistics like me who want to interact with people and spend time with people but just simply don’t know how. They would love to have the interactions that most people take for granted: Working towards an intelligent conversation.
Lee Passehl blogs for the Autism Society about his life with autism. Read his story!
Topics:Living with Autism
“Merry Christmas, Daddy!” An Imagined Conversation with My Son
December 21, 2012
By Dan Olawski
Back when my wife and I were first married (and long before our son, Mikey, was born) we had a lot of friends and family with young children around Mikey’s age (7 years old). We’d get the biggest kick out of how talkative and precocious their kids were, and, despite the parents’ occasional frustrations, with how detailed their conversations could be about every aspect of their favorite cartoon or questions about why the sky was blue.
Our experience with Mikey’s communication skills, unfortunately, has been quite the opposite. While Mikey won't stop talking at times, it's all mostly echolalia. The rare times he puts words together to request something, he either speaks too low or too loud. His answers to questions are usually "yes," with that response coming as soon as he hears what you are saying (and sometimes before that).
I often remember back to the way those children would bombard their parents with every thought in their head and I look at Mikey and think, “Ask me a thousand questions...and then a thousand more. Sing a song with me. Laugh at a joke with with me. Scream at me, even. Please, bring it all on and never stop. You’ll never bore or frustrate me.”
This time of year is particularly rough because any feelings Mikey has about the Christmas season are unexpressed. You can’t imagine the joy I’d feel if Mikey had a Christmas list or hounded me non-stop about wanting a certain toy. It is that very desire that has made it difficult for me to give my wife my own list. Why? Because she can’t possibly give me what I really, really want: A conversation with Mikey…
It’s Christmas morning and, as I just start to open my eyes, Mikey walks into the room and climbs onto the bed with me.
“Merry Christmas, Daddy!” he says in his beautiful, beautiful voice.
“Merry Christmas, Buddy!” I say as I give him a big hug and kiss.
“Daddy, do you want to go downstairs and open presents now?” he asks excitedly.
“In a few minutes, how about we sit here and talk for a little bit?” I say, feeling completely content with the world. “Is there something you really wanted for Christmas, Mikey?”
“Yep, you know, Daddy, I really, really, really want that Chuck E. Cheese toy,” he says with a look that drives home his words.
“Well, I think you were a pretty good boy this year. Maybe Santa left you a gift or two,” I say, trying to hide the knowledge of every gift sitting under the tree.
“Hey, Daddy? How does Santa fly through the air with his sleigh?” he asks with a quizzical tone.
“Well, I can’t say for sure, but I’d have to think it’s magic,” I say, hoping that’s a good enough answer.
“Hmmm, yeah, I think you’re right. But how does he remember what every kid wants for Christmas?” he says, convinced that his father knows what he’s talking about.
“Uh, well, you know how you have an iPad? Maybe Santa has an app for that,” I say, holding back a laugh and giving my most honest face I can muster.
“Oh, that sounds so cool!” he exclaims. “Can we go downstairs to the Christmas tree now?”
“Sure, Buddy, I know you can’t wait. But do you have any other questions for me?” I say, trying to extend this amazing moment as long as I can.
With a grin and a smile, he moves his face close to mine and says, “Yes, I have one more question…why is the sky blue?”
Holding back a tear, I pull Mikey into a hug and I whisper, “Thanks, Buddy.”
“You’re welcome. Merry Christmas, Daddy,” he says as we start to go downstairs.
“Merry Christmas, Mikey,” I say through the biggest smile ever.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
Autism Ain’t Afraid of the Dark
November 7, 2012
By Dan Olawski
Over the weekend leading up to Hurricane Sandy’s arrival here on Long Island, I did what most homeowners were doing. I put away outdoor items, taped up windows, gassed up the cars, and took inventory of flashlights and batteries. As for my son, Mikey, he took no notice of any heightened importance…it was just another couple of days to him.
I couldn’t help but think of the saying: “Ignorance is bliss.” I’m not sure how true that is, but, in a way, I’m glad Mikey wasn’t as worried and nervous as his mother and I. And, thankfully, as Sandy hit us with her worst, Mikey slept through the night. It was only in the aftermath of the storm that he would realize things weren’t as he knew them (and wanted them) to be.
We lost our power and heat early Monday afternoon as the hurricane was arriving. We were very lucky not to suffer any damage or flooding from the storm (I wish I could say the same for some of my neighbors). But the house wouldn’t feel warm and the lights wouldn’t shine again until Friday night.
Unfortunately, with the changing weather patterns, Hurricane Sandy is the second hurricane to come through Long Island in two years. Irene hit us last year and also knocked out our power out for a few days. It was then that I realized autism doesn't disappear just because the lights go out. Your house may lose power, but autism doesn't. This time around was no different.
When most of us have to deal with something like a power outage it disrupts our routines, but that is even more amplified for a child with autism. Add to that no school or home services and very limited places to go outdoors and you have the makings of a stressful and potentially dangerous situation.
(It is here that I have to thank Apple for creating the iPad and iPod…our main sources of distraction for Mikey during the outage – although keeping them charged proved quite challenging…thank goodness for car chargers.)
The first night without power or heat wasn’t a big deal for Mikey. It wasn’t cold out yet, he had a fully charged tablet, and he stayed close by to us (I believe sensing our trepidation). The next morning, after the storm passed and the blue skies greeted us with relief, I spent some time checking for any damage to our house and Mikey was able to lead a pretty normal day. Hearing of the devastation to most of the Island and the surrounding areas tore at my heart and also made me realize it was going to be a while before we got our power restored.
The first post-Sandy days consisted of daylight hours of trying to keep Mikey entertained without being able to take him out in the car (the roads being treacherous from downed trees and wires and powerless traffic lights), and night hours of trying to keep him warm and safe. I felt my chest tighten with stress each evening as the sun went down and the dangers of candles clashed with the potential hazards of falling over objects in darkened rooms.
Overall, thankfully, Mikey got through the week pretty well. His behaviors were definitely increased and he had a few meltdowns, but, quite honestly, after a few days of no power and heat I had a couple meltdowns myself. When requests for ice pops went unfulfilled and batteries finally died for the night, Mikey’s stress levels would go up. His efforts to communicate lessened and with no structured setting like in his classroom there was definitely more stimming and echolalia.
We did our best to provide Mikey with as normal an environment as we could and were there to comfort him when normal wasn’t possible. That is all we can do as parents, because while autism may not be afraid of the dark…neither is love.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
It’s Okay…
October 2, 2012
By Dan Olawski
Streamers fell from the ceiling and a brass marching band played “Happy Days are Here Again” as the school bus pulled up for the first day of school a couple weeks ago. Well, no, not really, but to say I was happy about the beginning of the school year is quite the understatement.
Mikey didn’t have the best summer break. He regressed a lot and his behavior was challenging at times. I always look forward to the beginning of the new school year, but this year I really couldn’t wait for it to come. Do I feel guilty about saying that? Sure. But it’s okay…
Mikey needed to be back in that structured environment and that’s how I justified my feelings. I did have some pangs of guilt about rooting for school to start back up and for thinking that being around the teachers and other students would be better for Mikey than anything I could do for him at this time. As for having those thoughts, well, it’s okay…
There is a great opportunity for guilt when you are an autism parent. And that stems from the first diagnosis: “Is it my fault?”
Through daily life: “Am I doing enough?” “Did I do the right thing?”
Then there’s that other internal guilt that just wrenches your heart. It’s a guilt that makes you feel like the worst person in the world. But I’m here to tell you it’s okay…
It's okay to be happy about back-to-school season…
It's okay to be happy when your child goes to bed…
It's okay to have those bad days when everything about being the parent of a child with autismgets you down…
It’s okay to want to scream…
It’s okay to cry…
It's okay...
We all have those feelings at some point. They come upon us sometimes at the worst moments and overwhelm every fiber of our soul. But yes, it is okay to give in to them…with a few stipulations:
- You must be a truly loving parent who gives your child all the love and attention you have to give.
- You must have the ability to know when your child will gain from you stepping back to let a teacher, therapist, or coach take over for a bit.
- And, most importantly, you must be able to realize when an occasional urge to cry or scream has become a problem that consumes you on a daily basis and requires the help of a professional.
So, as I sit here listening over the monitor to Mikey still goofing around three hours after I put him to bed, I can’t help but think to myself, “Go to sleep, buddy. Go to sleep!” And you know what? He will. And I will. And in the morning…it will be okay.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
Level I
August 31, 2012
By Jeff Stimpson
“Level I Assessment” reads the document they slide across the table at Alex’s IEP. It claims to be a “student interview,” and has spaces for his name, birthday, age, and today’s date. He had filled them all in with a pencil with numerals and letters that grew as he wrote left to right. The “son” of “Stimpson,” for instance, is twice the size of the “A,” the “98” is twice the size of the “6” for his birthday. You get the idea. I also have to think someone in his school helped him on the questions, but at this point I do hope that means they didn’t actually have to hold his hand that was holding the pencil.
The assessment consists of 12 multiple-choice questions for my son Alex about his life and activities. Each question and selection of answers comes with assorted square-inch pictures I sort of remember from standardized tests I took in first grade. I’m not a big fan of standardized tests, and one reason is that one of the pictures on my first-grade test was of a squirrel, and that made me teary because we had a cute squirrel living in our backyard at the time and I wasn't used to being in school for a full day. Hard times.
“What would you like to do when you leave school?” Alex is almost 14 and still watches Teletubbies, so this one chilled my spine right off until I realized they were just asking about dismissal at the day’s end. Alex checked “Home.” In response to “What do you like to do?”Alex checked “Music,” which I think must take a distant third to “Computer” and “Television” but does place several laps ahead of “Cleaning - Work.”
“What do you do when you go home?”
“Listen to music.” Again with this? But yes, there is music in Teletubbies.
“What do you not like to do?” Alex checked “Computer,” which brought to mind the beaten expression on his face a few years ago when he tackled and failed an IQ test. Wish he’d checked “Friends.”
“What jobs are you interested in?” He checked “Delivery of materials,” which coincides with what his teachers have reported and does offer a legit job possibility.
“What is your favorite part of the school day?”
"”Reading.” Great! The picture for “Reading” resembles Kilroy reading a book.
Is there something you'd like to do before you graduate?” Alex checked “Trips." For Alex I would've checked “Win Mega Millions.”
"Would you like to visit a possible program before you graduate?"
“Yes.”
A teacher asked me once if I was worried what would happen to my son when he graduates.
“No,” I replied. “I’m worried about what happens to my son when he’s 40.”
I’ve seen those programs. People like Alex being sheparded into lines to head to something fun to do on a typical day. A movie. An amusement park. A walk through a New York neighborhood where people glance at Alex with a surprising amount of understanding. The future for my son after graduation and a possible program includes the charity of others. I only hope that unlike the budgets that charity never runs out.
Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
Topics:Living with Autism
Pictures at an Exposition: Recounting the Autism Society 43rd Annual Conference
August 21, 2012
By Daniel Heinlein
August 15, 2012
This year, I was very fortunate to get my “big break” with The Autism Channel, a 24-hour, on-demand streaming service that will bring autism-spectrum content into the homes of families around the world. Traditionally, in my capacity as host of our flagship program, I Am Autistic, I interview professionals, parents, and people on the spectrum within the friendly confines of our television studio. After handling everything my producers had thrown at me to date, my final assignment for our first season was to go on location to the Autism Society National Conference, where I would conduct one last tour de force of interviews, mostly on the fly, and oh, if I wouldn't mind, maybe write about the experience for our newsletter. Post-production on the interviews is wrapping up. The latter follows below.
July 28, 2012
After three productive days and four sleep-deprived nights, I have just flown back from the Autism Society’s 43rd National Conference in San Diego. If I were some Henny Youngman type, this would be the point at which I add “and boy, are my arms tired.” Alas, I am not, and indeed, all four limbs are in pretty good condition for having withstood a jam-packed, four-hour flight. But if I were to localize my fatigue, I would have to point—emphatically—right to the old grey matter, which spent the week banking critical information like it hasn't since my days in psychology classrooms, firing in ways I never thought it could fire, and working double-overtime to make sure that I didn't tragicomically lose my balance on a piece of training equipment, laying waste to some poor fellow vendor's elaborately constructed exhibit.
Not that I'm complaining, by any means. I've become mindful as of late that even my most effusive praise is liable to take the tone of highly exacting kvetching; I blame this on a family proclivity for taking a hundred words to say what ten could have said. It calls to mind the old autism-spectrum admonition about how when people ask “How are you?” they're not really asking you to tell them how you are. (Then again, note the sprawling tendencies of journalism with the birth of the internet's infinite column space and subsequent death of the editor: maybe we notoriously non-self-editing folks on the spectrum were the vanguard all along). Simply rest assured that my brain is tired in the best kind of way, the kind that follows worthy exertion and accomplishment.
While the Autism Society's convention also featured a wealth of compelling keynotes and seminars about which I'm sure much will be written, the real bread and butter of this event was its convention floor. This was where the Autism Channel team spent the majority of its time. This being my first visit, I had no idea what to expect from an autism convention. It turned out that at first glance, it looked a lot like any other trade show or expo that comes to your town. The fact is that whether assembled to exhibit model trains, furniture, autism products and services, or anything else under the sun, there's a superficial sameness to these things that can't be avoided. Infrastructurally, you'd have seen the same vast ballroom packed with the same curtain-partitioned booths that dutifully serve every expo there can be. At any show, there will be fascinating exhibits from the technological forefront contrasting with the one booth that for unexplained reasons never got set up in the first place; the Autism Society's event was no exception. And though you'd have had a great time in San Diego, the climate-controlled convention floor had that familiar everywhere-and-nowhere feel, the kind that gives you a twinge of sympathetic despair when a conventioneer is recommending a terrific book from a prior trade show, but can't remember if she picked it up at the one in Indianapolis or the one in New Orleans.
The fundamental difference between this expo and any other, of course, is the certainty I achieved that the people doing business here were doing the capital-letters Right Thing for the Right Reasons. Though these booths don't rent themselves, mind you, this was not mere commerce for the sake of commerce. An exhibitor at a trade show for office supplies isn't there to improve the world. He's there to sell office supplies. Conversely, at the risk of sounding perilously trite, the vendors' involvement with the Autism Society's convention wasn't just business, but personal. The wonderful thing about autism's failure to discriminate is that it brings disparate people with disparate talents to one common and noble cause, touching not only households but careers, too. A financial planner has a child who is diagnosed with autism. Soon, that financial planner is managing not just anybody's money, but specializing in the unique fiscal demands upon fellow families raising children on the spectrum. Parents and siblings channel hard work and ingenuity into novel toys and games to reach family members they thought unreachable; now they share their products with others in hopes that they can feel the same breakthroughs. A stand-up comedian finds not just his life changed by a daughter with autism but his schtick, too, crafting a one-man show that makes its audiences laugh and cry in equal amounts. No one came to San Diego to make a buck off a niche market without earning the altruism and empathy that attend the years and years spent touched by autism. If anybody had tried, we'd have chased them off the floor.
So what a pleasure it was to meet so many people who, like The Autism Channel, convened to present their labors of love to a community that far too seldom finds itself both physically and ideologically Here In One Place. If, for one reason or another, you could not attend this wonderful event, The Autism Channel will be here for you, having documented as much of the convention as time allowed for a special “season finale” for The Autism Channel's first wave of programming. Between stints manning our own booth to spread the word about our upcoming service, I had the opportunity to interview many vendors and guests at their exhibits, asking questions, learning, and even partaking in demonstrations on your behalf. You will get to see these interviews, which substitute I Am Autistic's longform one-on-one structure for a diverse and fast-paced sampler, simulating the “so many exhibits, so little time” feel you surely would have had at this outstanding convention.
Back at our own booth, the other half of the convention experience was just as mentally stimulating, as The Autism Channel personally spoke with and presented excerpts of its upcoming programming to a large number of parents, siblings, educators, medical professionals, individuals with autism themselves, and virtually every remaining category of people somehow touched by the autism spectrum. Suffice to say that a large group of people who have come to network with one another in a short period of time would not seem to be a “home game” for a person on the spectrum. Nevertheless, I had a wonderful and rewarding experience getting to know so many of the devoted people involved with our community, and I should like to feel that I rose to the occasion. It's not often that I'm called upon to be social. By devising a copywriting career that consists mostly of working in the shadows of sales departments, being the person behind the people, not having to be social is kind of by design. But the convention brought me out of those shadows and into an unyielding fluorescence that was as much figurative as literal, and after meeting the people I had the pleasure to meet, I'm a better person for it.
We hope you'll enjoy our account of the Autism Society National Conference as much as we enjoyed presenting it to you. For those who were in attendance, thank you for putting up with our roving cameras and incessant questioning. For those who couldn't make it, perhaps this will persuade you to make the trip to the 2013 engagement amid the lovely hills and golden bridges of Pittsburgh. For the first time I can remember in a long, long time, I actually managed to travel light, avoiding the fees and frustrations of checked baggage with just my laptop and duffel bag. Getting my clothes laundered and my computer plugged back in will be perfunctory, a breeze. It's the mental unpacking that's going to keep me busy.
Daniel Heinlein appeared in the Autism Society's 2012 Autism Awareness Month PSA, and now blogs for autism-society.org about his work with The Autism Channel, where he engages in friendly interrogation on his interview program I Am Autistic. When not on set, Dan can be found running, cooking, writing ad copy, or agonizing over the shortcomings of his beloved Chicago Blackhawks. He can be contacted at daniel.g.heinlein@gmail.com.
Topics:Events, Living with Autism, News
Vote for the Autism Society SXSW Proposal: “Apps for Autism”
August 20, 2012
By Autism Society of Greater Austin
The Autism Society of Greater Austin has submitted a panel presentation proposal called "Apps for Autism" to two divisions of the South by Southwest (SXSW) Festival.
Now all we have to do is make sure that our proposal is selected – which is where you and all your friends come in!
SXSW gauges interest in proposed topics through its PanelPicker Web page. This forum allows people around the world to read, evaluate, and comment on the proposal ideas. We need your help and support to show that this topic is fresh, current and relevant to the community-at-large.
Our panel will include three members:
1.) A BCBA/educator who has trained professionals, parents and people with autism spectrum disorder (ASD) in using assistive technology;
2.) A representative from Bridging Apps who has written a book on iPad apps;
3.) A moderator.
We would also like to live-stream a person on the autism spectrum who uses a communication device. For background, we'll include video clips from communication software developers and news media.
We believe that the dialogue on PanelPicker will help spread autism awareness. SXSW is a showcase for the arts, technology, education, and innovation. Through this panel, we'll demonstrate that people with autism can participate in mainstream society using technology and that technology can bridge gaps between populations. We hope to take this a step further by initiating discussion on the development and use of technology for and by people with ASD not only for communication and education, but also employment. We will be checking the comments page daily to respond to your comments.
SXSW PanelPicker voting for Interactive opened August 13 and runs through August 31, so please spread the word!
Now quit reading and go vote by following these easy directions:
To vote for our panel:
1. Go to this webpage - http://panelpicker.sxsw.com/ .
2. Click sign in.
3. Click sign up on the next webpage that loads. Follow prompts to enter your email address and a password (which enables you to comment on our proposal)
4. Once you have registered, you will be sent to a welcome page. At this page, please click search/vote. You will now have access to all submitted proposals.
5. The easiest way to find our proposal every time you access this page is to enter “Apps for Autism” or “Autism Society” in the search box. Our proposal is one of 3 listed – click it and you are there!
6. Once you find "Apps for Autism" please click the Like (thumbs up) button on the upper left and make a comment or ask a question of the panelists. You can "like" the proposal as often as you choose – vote early and often!
7. The comments pages will be open to the public until August 31, so vote today, vote again tomorrow and put a reminder on your calendar to vote next week!
Thanks so much for your help! Please leave us a comment to let us know you voted.
An Update on the Fall Autism Summit
August 16, 2012
By Scott Badesch, Autism Society President and Chief Operating Officer
In his opening remarks at our recent national conference, Dr. Jim Ball, Chairman of the Autism Society, issued a call for a summit to bring together national organizations involved in advancing the independence, autonomy, self-sufficiency and dignity of each person living with autism. The purpose for the summit is to address a growing concern within the autism community: infighting is a too-common reality that diminishes our collective efforts to advance our collective work.
We all want a more effective and responsive government support system, but we also have to deal with the reality of a government that has less money and will likely need to cut programs. It makes good sense for us to bring forth a collective agenda to assist government on how to address the financial aspects of supportive services. If we don’t present a common message, we confuse government officials with differing positions and singular agendas. In the end, we are more easily dismissed or left out of decisions all together.
There are going to be areas where we all don’t agree. Not only is that okay, it’s a good thing. That is why there are various organizations engaged in national advocacy efforts. But there are some underlying principles where we do agree. We want to find those topics where we can gain consensus and a shared multi-disability vision that will impact individuals of all ages. We can certainly find commonality in the need for increased services for adults and more responsive and accountable public school systems. Individuals with developmental disabilities are denied their civil rights by the very systems put in place to support them. Surely we can find common ground here that positions us at the table where decisions are made – not making us the “beneficiaries” of decisions made without the input of groups representing self-advocates, families and others affected by autism.
As a leading government official told me recently that as long as our infighting continues little will be done to help our community of individuals affected by autism. Other “industry” groups agree to disagree on a lot, but they at least agree on certain values, efforts, and advocacy positions that are in the best interest of all they serve. This is why the Autism Society decided to call for a national summit. We need to meet and be inclusive rather than exclusive. We need to develop a few national goals that each organization agrees to support. To do anything less is simply maintaining the status quo, which, if we are really honest, needs to be greatly improved.
Topics:Events, Living with Autism, News
An Update on the Fall Autism Summit
August 16, 2012
By Scott Badesch, Autism Society President and Chief Operating Officer
In his opening remarks at our recent national conference, Dr. Jim Ball, Chairman of the Autism Society, issued a call for a summit to bring together national organizations involved in advancing the independence, autonomy, self-sufficiency and dignity of each person living with autism. The purpose for the summit is to address a growing concern within the autism community: infighting is a too-common reality that diminishes our collective efforts to advance our collective work.
We all want a more effective and responsive government support system, but we also have to deal with the reality of a government that has less money and will likely need to cut programs. It makes good sense for us to bring forth a collective agenda to assist government on how to address the financial aspects of supportive services. If we don’t present a common message, we confuse government officials with differing positions and singular agendas. In the end, we are more easily dismissed or left out of decisions all together.
There are going to be areas where we all don’t agree. Not only is that okay, it’s a good thing. That is why there are various organizations engaged in national advocacy efforts. But there are some underlying principles where we do agree. We want to find those topics where we can gain consensus and a shared multi-disability vision that will impact individuals of all ages. We can certainly find commonality in the need for increased services for adults and more responsive and accountable public school systems. Individuals with developmental disabilities are denied their civil rights by the very systems put in place to support them. Surely we can find common ground here that positions us at the table where decisions are made – not making us the “beneficiaries” of decisions made without the input of groups representing self-advocates, families and others affected by autism.
As a leading government official told me recently that as long as our infighting continues little will be done to help our community of individuals affected by autism. Other “industry” groups agree to disagree on a lot, but they at least agree on certain values, efforts, and advocacy positions that are in the best interest of all they serve. This is why the Autism Society decided to call for a national summit. We need to meet and be inclusive rather than exclusive. We need to develop a few national goals that each organization agrees to support. To do anything less is simply maintaining the status quo, which, if we are really honest, needs to be greatly improved.
Stuck Windows, Stuck Minds
August 9, 2012
By Dan Olawski
Back when I was a kid, the driver's-side power window on the family car stopped working correctly. My father had the inclination to try to fix it by himself. Well, for the longest time the inside door panel, along with a few other "extra parts," were kept in the trunk while the window remained broken.
I don't remember what the result was of that experiment in auto healing. I think we probably got rid of the car before the window ever worked again. But I took a long-lasting impression from that whole situation: Don't try to fix things if you aren't 100% sure of what you're doing. But if you do try…never give up before you reach the result you’re looking for.
I've been thinking a lot along those lines recently in relation to treating and healing my son Mikey's autism. I think it was the end of the school year and the inevitable review of the good, bad, and unfulfilled potential of the past few months that has turned me, quite honestly, into an emotional mess where Mikey's well-being is concerned. (As an example, Coldplay’s song, “Fix You,” especially the lines “High up above or down below/When you're too in love to let it go/But if you never try you'll never know/Just what you're worth” had me in uncontrollable tears the other day).
My column this month has been inspired by the sadness, doubt, and frustration I'm feeling and is not as upbeat, optimistic, and relatable as the pieces I usually write for the Autism Society’s blog. The genesis of these new feelings is my family's consideration of a new alternative treatment plan for Mikey and the lingering question: “How do you know if what you’re doing is helping or harming your child?”
As the song says, “…if you never try you’ll never know.” Is it always better to do something, than nothing? I think as autism parents we’re often on our own in this dilemma and it's that uncertainty and fear of the unknown that really makes me feel the need for guidance I can trust.
My struggle is this: On the one hand, I want to do anything I can to help Mikey. But on the other hand, I don’t want to do anything that could possibly hurt him. Because those two things can potentially clash, and because I love him so much, I tend to get paralyzed with making decisions on different approaches to treatments. It also doesn’t help that the Jersey Boy in me has that ingrown distrust of most things that sound like they’re being touted by a snake oil salesman ("Yeah, right! Get outta here!")
Unlike the power window situation in my dad’s car, I don’t want to attempt a “fix” with Mikey unless I’m really sure of what I’m doing. Mikey doesn’t have any spare parts I can ignore if something goes wrong, and once I make up my mind I want to see it through to the end. But, through all of this recent contemplation I have realized one thing: I have to give my dad credit for not being afraid to try to fix the window.
So, I’m also going to try. I'm going to be open-minded and work with my wife on this decision. I admit it…it’s tough for me. But I know I’m going to feel frustrated whether we go with this treatment or not. The doubt will always be there until I see something that proves itself to me. So, for now, I’m pushing the Jersey Boy out of the way, doing my research, and focusing on what good may come in helping Mikey to be happy, healthy, and function at his highest level throughout his life.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Living with Autism
