Wednesday, June 29, 2011

Unfriendly Consequences: What Competition for Limited Resources Does to the Autism Community and Autism Families

Autism and Oughtisms
Autism and Oughtisms

What happens to a community of people facing the same challenges, forced to compete for limited resources (particularly government resources)? The effects I’ve seen at a local level – here in New Zealand – appear to be replicated overseas, according to what I’ve seen in debates and conflicts in the online communities.

There are various government provided supports (in terms of finances and services) that require you to prove your child’s autism is more severe than other children’s autism. Sometimes this is done in direct competition; a specifically limited number of packages of assistance are made available within the country, to the point that if your child qualifies for the support, there is one less assistance package available for another family. Other types of support are available to every child on the spectrum, but the level of support you receive, or how long you receive it for, depends on the severity of your child’s autism.

These schemes are set up in this way to respond to the reality that there are not unlimited funds and services available, and that to make those resources available to every child with autism, would dilute the usefulness of them to anyone since they would be spread too thin. So the government has had to come up with some way to respond to the different levels of need present within the autism spectrum; acknowledging that it is a spectrum where one person can be affected very differently from another. In order to achieve this understandable goal – getting scarce resources to those who need it the most – they’ve had to create categories and corresponding terminologies of severity. Parents must learn to understand and use those categories in order to understand and access the services on offer for their children.

The consequences of all this can be quite significant. I’m going to go through the ones I am aware of.

One of the most disturbing things I have heard time and time again about my son, from other parents of autistic children, is how lucky I am that his autism is so severe. This has always been said to me in discussions about the schooling options we have available to us; if his autism was less severe he wouldn’t have qualified for the level of support he has, he’d have been expected to take part in mainstream schooling with little or no help, as is true for many “less severely” affected autistic children. In a world where severity is the difference between lots or hardly any schooling support, it makes sense to say to someone like me, how lucky I am. Yet every single time someone says that to me, I get quietly angry. I’m lucky my child has life-long challenges? How dare they! I know why they say it but it still pits me against them emotionally.

It also makes me feel like I have to defend my child’s needs and severity to the other parent, or apologise that we get the help they don’t. I shouldn’t have to do that or feel that way, yet the system is set up in such a way that my child’s needs were very probably seen as trumping their child’s needs; the fact we got assistance may actually mean their child was less likely to have received the help they also desperately needed.

In this situation – them telling me I’m lucky, me defending and apologizing for the services we receive – we parents are pitted against each other, and the system stands there like some accepted monolith. The attacks and upset should be directed at the way the system is set up, but changing the system is a slow and overwhelming task; it’s much “easier” to accept its existence and rules, and turn our frustrations on each other.

The way we have these discussions – even the ability to have these discussions – shows we have internalized and maybe even accepted the categories of severity or functionality presented to us by the service providers. Just the constant use of their terminology, requires us to also think using the terminology; it inevitably starts to sink into how we understand our own and others’ autistic children.

In the process of filling out the endless forms to get these services and assistance from the government in the first place, I was often told to exaggerate my son’s challenges. This advice came not only from parents who had been through it all before, but also from the government employees who aided the application process (the forms are filled out by one arm of the government, then another arm evaluates it, and a third arm provides the service!). Sometimes the advice of exaggeration came in the form of “tricks of the trade”: Provide plenty of examples of the difficulties and don’t hint at his capabilities, use the right emphasis, etc. Other times the advice was to very literally exaggerate close to the point of dishonesty.

I don’t work that way; I spent nine years of my life studying law and philosophy (and then teaching the same), so to knowingly lie in such a situation goes against my well-argued, well-understood (and well-entrenched) principles, even if it would supposedly benefit my son. I very strongly hold to the view that if you think the system should be different, then you fight to change the system for everyone; you don’t lie and cheat in such a way that leaves the bad system in place for everyone else and even reinforces its continuance. I didn’t need to exaggerate my son’s condition to get the help he needed, but because it’s such widely known advice, I still have to deal with the fall-out of the advice: People presume that I must have exaggerated or known some special trick to get my son the help he receives. It’s as if the receiving of that assistance for my son is evidence of my immoral character.

Yet again, I am put in the position of defending myself and the help my son gets, against parents who didn’t get the help (presumably in part because they were too moral to help the application along by lying).

This effect of competition for limited resources starts before you even fill out your first form. It starts at the point of diagnosis. Your child’s challenges might be described and categorized in difficult ways if they are borderline autistic or have co-morbid conditions. The pediatricians and health professionals know that if you get the “right” diagnosis, you are more likely to get the government assistance your family and child desperately need. Some health professionals are so in-tune with these concerns and the level of need of their clients, that they have over time established reputations as the “go-to” person, to get an autism diagnosis which will allow you to get your child the help you want to get them, even if your child has some other challenges that don’t fully fit the diagnostic criteria, particularly according to other doctors who had declined the diagnosis of autism. (I have written before about such a doctor within the local autism community.)

These doctors are sometimes seen as heroes, particularly by the families who get financial assistance because of their diagnoses. They are just “working the system” to help out families. The problem being that an autistic child who gets their diagnosis from this person will then have their diagnosis doubted when other parents hear about who the diagnosis came from; even if their child is genuinely autistic. Because of the ongoing competition for resources – diagnosis is not the only point at which resources become available – these children can become targets of anger because they are diluting the limited pool of assistance.

Again, the doctors doing this – or even tempted to do this – should be arguing and fighting to change the system. They should not be reinforcing its unfairness and problems, by massaging truths and details so their clients can fit within it; leaving lesser “informed” families and families of future children, to continue to suffer their way through the unchanged unjust system.

I want to make it clear that I am not arguing these are the only reasons we might call others lucky for having more severe children, or argue over whose child is more severe, or use terminologies about severity of functionality, or get annoyed that certain people get help that we don’t. But it seems to me that the systems we operate within whilst competing for limited resources, go a significant way towards creating and furthering such competitive attitudes and unhelpful terminology.

One last important effect that I want to mention, that results from such competition for scarce resources, is what it does to our own views of our children and their views of themselves.

When we are forced to think about how severely our children are affected, and are “rewarded” with a share of the pie when we make our children appear significantly and severely affected, it necessarily impacts on how we in turn view our children. We are asked to talk and write about how bad their problems are, and a lot turns on how successfully we do that. We must focus of their problems, not their skills, in our applications for help. That makes sense, but it can make you start to see your child daily in terms of those severe challenges too. This doesn’t mean there should be a “what do you love about your child” section in such forms – there’s enough paperwork already thank you very much – but it does mean that its important to try to balance those necessarily negative focal points with celebrations and focusing on the positive in other areas of your parenting life.

Not only will our children be affected by how we as parents view them, they may also become directly aware of them being described over and over on endless forms as difficult and troubled children. We can try to protect them from this – fill out forms away from them and out of ear-reach if the details are being discussed (as they often are) – but that is not always possible. We also often underestimate what our autistic children can hear and understand, so we don’t always make the necessary effort to make sure they don’t get directly exposed to these views of who they are. Our children face enough problems without realising they are viewed and talked about in terms of their challenges and problems, not their skills and amazing selves. Self-esteem, confidence and a positive self-image, matter.

The competition for resources problem isn’t going away anytime soon, particularly for those of us who must rely on the publicly funded system to meet our children’s special needs. Whether the current system is set up in the best way to respond to those needs and allocate those resources, is a separate issue to the necessity of performing those tasks. At the least, I think it is extraordinarily important to be aware of how that competition impacts on our attitudes about our own and other autistic children, and of autism in general.

Monday, June 27, 2011

On "Social Blindness"

Sarah Seymour

Two Facebook friends who I am blessed to know (and who happen to be on the autism spectrum) made the following comments:
"[Simon] Baron-Cohen says autistics are 'mind (socially) blind" ... but... who is blind?... according to Temple Grandin, neurotypicals are "sensory blind"... seems we are all pretty blind... but at least many of us autists are making great efforts to see outside ourselves... how many of you neuro...typicals can claim to match our efforts????"

“I agree. :) See more in the article Q&A: Temple Grandin on Autism & Language on NPR. Autistic people can be isolated, Temple Grandin says, not only because they have difficulty making a connection with so-called "normal" people, but because normal people find it difficult to put themselves in an autistic person's shoes and see the world from their perspective."
I thought the differences they pointed out were so interesting. Having a social impairment is one of the three requirements for a diagnosis of autism. But "social blindness" is an intriguing term, and refers to autism innacurately in my opinion -- because autism is by definition a spectrum disorder. Some people with autism cannot read or discern facial expressions, but others can. Some can read voice tone and intonation while others are mystified.

And I know some neurotypicals (NTs) who could be considered "socially blind," to a degree. Perhaps I myself am -- I often say the wrong thing at the wrong time. Not just small social errors, but glaring blunders and “I can't believe she said that to the boss” office legend errors. I sometimes don’t know when to keep a secret or to share. I am a bit naive. I can’t read sarcasm in people’s voices even though I dish it out with a heavy hand myself.

So, I wonder at comparing people sometimes. It can be like comparing apples and oranges. My brain is wired differently from my daughter's. The fact that we share social challenges may have to do with  autism -- or not. It may be coincidence.

No one can deny how hard it is is for a person on the spectrum to play by the silly social rules they didn’t write. But perhaps we should stop looking for conformity, and start looking for middle ground and understanding. (Though I do not wish to digress into my usual spiel. Go Acceptance! There, I am done.)

People with autism should not have to explain why they are the way they are any more than they should have to explain their skin color, or hair color. The same goes for being NT. We need to accept each other. I realize for many this will not be easy, but nothing worthwhile ever is.

I know that we are not going to change the world overnight, but the 1 in 150 children now on the spectrum will be 1 in 150 adults in 25 years. That will affect the world in all sorts of ways, including the business world. I am hoping the work we do now breaks ground for those future adults, because all people deserve respect and to be able to be themselves.

Friday, June 24, 2011

Interview: iAdvocate's Alan Foley on Empowering Parents of Children in Special Education

Syracuse University professor Alan Foley developed iAdvocate, a free iPhone app that helps parents of school-age children with special needs "share and develop specific strategies with parents for working collaboratively with a school team to improve their children’s education." We're grateful to Dr. Foley for talking with us about how iAdvocate can help our families, his development process, and how his app is setting a advocacy precedent. We recommend reading Syracuse University Magazine's excellent Spring 2011 Access and Opportunity article for more information about Dr. Foley's work.

Your app is remarkable, and is filling a role a lot of people hadn't anticipated -- when it comes to autism and other developmental disabilities that can have a language component, folks tend to focus on iPods and iPads in an AAC (Augmentative and Alternative Communication) capacity. Apps like iAdvocate clearly demonstrate that these devices can be so much more. What inspired you to create your app?

iAdvocate grew out of my interest in mobile learning and informal learning. Also Syracuse's School of Education has a long history of inclusive education and disability advocacy, so I had colleagues whose careers are in inclusive education and parent advocacy -- Syracuse actually has a parent advocacy center, Also my wife has done a lot of work with disability issues. It's something I've always been peripheral to even though I wasn't a special educator. I've attended IEPs but as an English teacher, and neither of my kids has IEPs. So the content is not something I've necessarily experienced -- that content came from the work and experiences of people from around the school.

It was like chocolate and peanut butter, because I was saying, "I really want to make an iPhone app," and my colleagues were saying "We need to figure out a way to get information to parents." The material was all out there already -- this isn't new content, most of it anyhow. But it's really hard to have that information in place when you need it, or to know what a school official might say to you as a parent, and how you might be able to respond, or what your rights and responsibilities are, and how you might proceed strategically. That is what I found powerful and valuable about this particular platform.

For me, this was an exercise in making an app in an education area I thought was being underexplored. Everyone's always excited about these devices, but we're still not really thinking about them in a really robust and fundamental way, in terms of how does the design of these tools affect the teaching and learning that can be accomplished with them.

How did you come to be the person who spearheaded iAdvocate?

I was always into technology in the ways you could be into technology in the '80s -- in computer clubs in junior high and high school, working on an IBM PS2, writing in BASIC, playing the original Oregon Trail, stuff like that. I went to grad school while I was teaching high school English, initially to be a technology coordinator in the schools -- but then I became interested in technology in a more global sense, in the teaching and theory and pedagogy, so I became an academic.

Things around the Internet were really starting to ramp up when I was in grad school in '96 and '97, and I got in at the ground level -- doing web design, teaching web design, running web servers. So I've been doing that for a long time. But as an academic, I'd been moving away from making stuff, and I was really missing that, so in the last couple of years I've started to move towards design and development: finding problems and creating technology solutions. It's a little unusual in a school of education, but it's not unheard of.

I've also been really involved in web accessibility. My father is blind, he's a screen reader user, so that's my connection to assistive technology. I already knew a lot about how content needs to be formatted to be accessible. (iAdvocate is fully compatible with iOS's Voiceover accessibility feature.)

What kind of feedback are you getting on iAdvocate? Has it been a success?

I have to joke that I've talked to more people about this iPhone app, this iOS app, than I have in my ten previous years of scholarship. I know how many people have downloaded it, and even though it's a niche tool, in a niche market, we still had 1500 downloads in the first six weeks, which is probably 1000 more people than have read anything I've written. So that's been really refreshing.

I've had people ask if there's a web-based version [of iAdvocate] -- and that's something I've really had to educate people about, and which gets back to your comment about iPads being more than AAC devices -- we're not talking about a web page, or a computer-based thing. This is totally different and new.

Yes, iPads and iPods get penalized because the devices are so new -- we don't have the long-term data to justify their use in the quantitative way educational departments require and demand. It's a problem we hope will lessen with time. Educators don't always understand how flexible these devices can be, in terms of visual schedules, social stories, worksheets, discrete trials, etc. These are the kind of uses people aren't yet thinking about.

I'm coming at this as a bit of a special education outsider -- I didn't teach special education, and I'm not an occupational therapist or a speech therapist. But I see situations where schools will buy a $7000 [dedicated AAC device] DynaVox, but they won't buy a $600 iPad and stick [the AAC app] ProloQuo2Go on it. Often the argument is that the child might break the iPad, but that kid would have to break ten iPads before the cost evens out -- and the iPad does other stuff that the more expensive device doesn't.

But depending on the child, depending on the situation -- selling the iDevice as something that can do so many other things is not a selling point because schools think it's distracting, and they want its use confined to an academic space -- they don't want the kids playing Plants vs. Zombies.

Another thing worth noting is that iDevices have the Speak n Spell effect -- they don't look like they were designed for a person with special needs, and other kids think they're cool. I don't think this can be overstated.

Agreed, the social cachet is significant. We've published stories about the iPad cool factor in school social settings here on TPGA.

A professional advocate we spoke with thought iAdvocate was a fantastic app for getting parents up to speed on their rights, and for prepping for IEPs -- but was concerned that some of the recommended language was more confrontative than collaborative, and so might set the wrong tone in meetings.

I can't speak for my collaborators, but they are relentlessly friendly and positive people. And there are strategies in the app about working with the team, and having parties, and celebrating successes -- but not in the response scenarios. But my sense is that the terse nature of the app's language coupled with design constraints has led to an email-like quandary, where some things gets a little lost in translation. Tone is really hard to convey via text.

Part of the intent was to help the parents who confront the [potential educators or administrators responses to parent requests] statements for the first time and completely shut down. We really want to help those parents get their feet in the door!

And believe it or not, in our parent testing, parents were fairly unequivocal in asking us to get down to the nuts and bolts of the information -- but we may have stripped it a bit too much. I would love to talk with the advocate you spoke to, and I can certainly add the collaborative language to the growing list of features I'd like to add to iAdvocate 2.0.

You developed iAdvocate at Syracuse University. Was it a class project?

I posted some of the process on my blog, so you can read about it there. But yes, I did make it into a class project for a doctoral seminar in design and research. We did prototype testing, and focus grouping and things like that, but a lot of it -- hundreds of hours -- was me and a couple of other people working on it, even though it's a relatively simple app. I scraped the project together (I'm rather good at "making things happen") even though I didn't have any money -- I'm a junior professor. But we also found the money to pay a developer for about 15 hours worth of development -- which is nothing, really. The rest of it is about six months of content development, interface design, and prototyping.

Do you have iAdvocate 2.0 planned for the fall? Would it need to be another class project?

A little of both -- I've been trying to beat the bushes. There are lots of people who are interested. And it's got goodwill; we gave it away -- it's a free app.

Yes, that's something I found really impressive -- this is something parents really need, but those same parents are often really strapped in terms of financial resources.

I think I can pull it together again. But I'd rather not do it by the skin of my teeth this time; I'd actually like to be able to go into it and hire a grad student to manage the process a little bit, and have more resources at hand.

I've had inquiries, I don't have anything yet. If I do do another version -- and it's very high on the list of things I want to do -- I then want to simultaneously do an Android version (which is much cheaper to do than an iOS version), since that's the question I get the most: is there an Android version. Then I'd like to start adding more content, and incorporate features like more collaborative language. I've told my dean that these apps have a really short shelf life, and that we should be well into version 2.0.

If developers are interested in working with you, are you interested in working with them?

Yes! Any and all. I'm interested in getting more of these kinds of apps out. Also, the concept of an advocacy tool has been very interesting -- there are lots of other contexts in which there is an information differential or a power differential in which something like this could be useful, for instance working with immigrant families. I feel like we've developed a nice model.

Thursday, June 23, 2011

A Little Helps a Lot: Donate $1 to Autism Research.

Autism Science Foundation is featured on today giving us a simple way to donate.  

The Autism Science Foundation provides funding to scientists and organizations conducting, facilitating and promoting autism research, and has our shared desire to seek evidence-based therapies. ASF was the initial support behind the grant that allowed TPGA editor Shannon Rosa to go to IMFAR, and helps fill in the gaps that federal cuts have left in research budgets; sometimes it only takes a seed grant to get a driven researcher on their way.

Today you have the opportunity to make a quick, small donation to a great organization, and Philanthroper makes it easy to do. Philanthroper has been described as the “Groupon” of the nonprofit world raising funds $1 at a time for a selected nonprofit and today that’s Autism Science Foundation:

Philanthroper is about group giving. If everyone gives a little bit it will add up to help fund another critical piece of autism research. All dollars raised through this project will go directly to research.

Please join Thinking Person's Guide to Autism and donate a $1 today,  then take a moment to share the link on Facebook and Twitter to encourage your friends and family to make their own gifts.

Thank you-
The Editors

Wednesday, June 22, 2011

Heeding Autism's Aesop

Earlier this year we interviewed John Elder Robison, but today TPGA editor Carol Greenburg gives her unique perspective as she reviews Mr. Robisons new book, Be Different.
-The Editors

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, its 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. Any link on this site benefits autism education and support, so rest assured, I’m not personally making a dime from this sales pitch. I just think Be Different will make a difference in your life. 

A version of this essay was originally posted at Aspieadvocate, Carol Greenburgs personal blog.

Monday, June 20, 2011

Summer Strategies for Autism Families

Shannon Des Roches Rosa

Summer. Now there's a word that terrifies parents of school-aged kids with autism. We do not necessarily associate the word with "break." For us, summer means potential implosion of carefully orchestrated school, services, and respite schedules -- and the resulting scrambling and scraping to make new arrangements.

My son Leo's last day of fourth grade was Friday, and I am fretting. He is in such a beautiful space in his wonderful new school -- progressing on his IEP goals, excited to get on the school bus every morning, arriving home trailed by email reports of successful, action-filled classroom days. Getting him to this point has taken months of routine-reinforced effort. I'm worried that summer will undo it all.

Children with autism work hard to gain skills during the school year, and that learning can quickly slip away without ongoing, reinforcing learning opportunities. This means our children need a summer full of structured learning as well as entertainment. That often costs extra, and is generally not part of typical summer camps or daycare.

Many families simply make do and keep their kids at home all summer long, become their child's summer school. Some even have to hoard all of their vacation hours for this privilege. And as much as I would like to assure you that we are all saintly people who accept this opportunity with grace because we are never given any more than we can handle, the truth is that not all of us have the skills or personality or stamina or resources to provide the kind of summer our kids both need and deserve.

So many wonderful people try to support kids with special needs during the summer. There are about five million summer camps for our kids. Many are even free. Our own town's parks and recreation department has a program to include special needs participants in regular summer classes or camps -- and does so free of charge, depending on volunteer availability. It all makes my candy heart go thump-thump.

Except my son Leo needs more than an enthusiastic volunteer. He needs an experienced aide at a camp that can handle truly challenging behavior. Those camps are elusive. There is only one camp in our region that can accommodate Leo, and while it's wonderful, it's expensive. Our regional center does offer funding for one camp session, but families who choose that route have to give up respite hours in exchange. It's not an option for all the local kids with intense autism.

Parents of kids in unilateral placements are in an especially tricky spot. If summer camp services don't exactly match what the private school provides, the school district/Department of Education can use the summer arrangement as ammunition in an Impartial Hearing. This further limits our kids' summer options.

We got lucky. Leo started a full week of summer camp yesterday. His school provides four weeks of summer school, or Extended School Year (ESY) instruction in his current classroom, with his current teacher. He will continue to receive services during that time: 1:1 aide, speech therapy, and occupational therapy. He may not even notice that summer has struck.

Then he has four weeks between the end of his ESY and the resumption of his regular school year. He will be at camp for an additional weekend during that time. He will get twelve hours of respite care per week (for which we are grateful) during the other five.

The rest of the time? He is mine and I am his and we are all together.

It's not a bad arrangement, as family togetherness goes. I enjoy our unstructured time together. Leo can be unpredictable and stubborn, but he's also adorable, fun, and never, ever boring. He's also a good travel companion -- we built up his travel and outings tolerance with short trips and excursions to Maker Faire, Salt Point State Park, Castle Rock State Park, and the Exploratorium. As he got more comfortable with travel thanks to detailed planning, we took road trips to my visit my mother in San Diego, an even managed an overnight boat trip.

The problem with mostly-mommy-most-of-the-time: Leo is used to 1:1 supervision and engagement all day long, and I can't possibly provide the kind of routine and stimulation he craves, no matter how many camps and grandparent visits his sisters get shuffled off to. I try to keep Leo occupied, and I have a lot of support, and having an iPad helps, but I still worry that -- as has happened in summers past -- it won't be enough, and Leo's behavior and abilities will keep disintegrating until school resumes at the end of August.

So, understandably, I'm scared of summer. But I also think it has a lot of potential. It won't all be minefields.

I work flexibly and from home; I'm always here. That itself provides sameness and routine. Our house is a known place, a reassuring place, a good place for Leo to be when the days are long and warm. He has a pool, a trampoline, swings, and room to run around. He feels cocooned and happy; putting almost every last one of our eggs into this domestic basket has paid off.

My self-taught super swimmer boy will be spending many hours basking in the backyard waters this summer, and I'll be right there with him, one on one, soaking up the sun while I marvel at my son. You're welcome to join us, and see how we're doing.


A version of this essay was originally published at

Friday, June 17, 2011

Some thoughts on Dads, IEPs, and PTOs

With love and respect for our dads with autism, and our dads of children with autism. Have a rewarding Fathers Day. -The Editors

G. Brett Miller

This is a repost of something I originally wrote in the summer of 2007. Three years old, but just as relevant now as it was then.

Last summer (2006) in the post Men must attend IEP meetings, I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox’s quote:
Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that ‘men must attend meetings.’ [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.
What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother, or even male co-worker or friend comes to a meeting or mediation.
This post was brought back to mind for me by the blog post Gender Bias and Autism Dads at
Have you ever been treated like a second-rate member of an IEP or school meeting? Of course, right? But how about a second-rate parent? Have you ever had to say, “Umm, I’m here too” or “Hey, I’m also the parent” when the faculty (in my case, all or predominately female) ignore you completely and speak to the other parent without acknowledging your existence. Or even worse, have you ever endured the cruel “Dad” jokes, when these so-called professionals assume the mother does all of the dirty work (cooking, cleaning, shopping, taking care of the child, therapies, researching, fighting school districts, etc.) while you escape to the normalcy of your 9-5?
Fortunately, I’ve never had to endure this. The IEP teams we’ve worked with over the years have all been true professionals, treating us as equals in the process. If anything, most were pleased to see a father taking such an interest. (Of course, it has helped that through the years I’ve had jobs that gave me the flexibility to attend.)

To be honest, I’ve had a more difficult time trying to be an involved father in the PTOs (Parent-Teacher Organizations) of my non-autistic son. I seem to be the only father that the mothers had ever seen express an interest in being part of the PTO. This made for some interesting, sometimes uncomfortable initial meetings as they tried to figure me out. (It took me a while in one group to get them to stop calling me Mr. Miller!) Eventually, I became just one of the gals (in a manner of speaking :) ).

I know that, statistically speaking, mothers tend to be the primary care givers and the ones who must work through the IEP process and all that it entails. I also know that divorce rates among parents of autistic children are high, again with mothers typically (not always) the ones who must take care of the autistic child.*

But I’m here to tell you – and I know a few guys out there who will back me up – that autism dads are here, and we care, and we’ll let our IEP teams know that we’re here and we care if they try to ignore or marginalize us.

*On the subject of autism divorce, Brett recommends checking out First National Program Launched to Combat Divorce Rates in Autism Community in Medical News Today and the Family First page on the NAA site.

TPGA Editor Shannon has written about divorce rates and autism at, and recommends reading the 2010 Kennedy Krieger Institute report 80 Percent Autism Divorce Rate Debunked in First-Of-Its Kind Scientific Study.


A version of this essay was originally published at

Wednesday, June 15, 2011

But I Don’t Know What to SAY!

Kim Dull

I realize that 99.999% of the people I talk to regarding my son’s special needs and diagnoses have good intentions--they just have no clue what to say or how to react. They're trying to help, but unfortunately some of the most common responses are the most irksome.

I want to acknowledge that quite often I am just as clueless about how to respond when someone shares news, like a new diagnosis, even though we’ve been through it ourselves. Everyone is different and reacts differently; that’s what makes it so hard. What works for ME may not work for the next person. And this is not intended to make you feel like you need to walk on eggshells when you get this news. Quite the opposite: it’s intended to make you feel comfortable in NOT knowing what to say.

So here's a quick how-to guide for navigating the tricky waters of the Autism (or any Special Needs) Conversation.

DON’T SAY “Everything happens for a reason."

Really? And what’s the reason behind my son’s significant developmental delays and sensory seeking behaviors? To teach us the patience of saints?

DO SAY something along the lines of  “Wow. How are you doing?”

Because I’m actually doing just fine, thanks, but asking means you care. Telling me about our situation is frustrating. Asking me about our situation gives me a chance to vent and discuss in a way that I find
to be cathartic.

DON’T SAY “That’s just what boys do” or “My brother/son/nephew/friend down the street did that as a kid."

While I accept the fact that a vast majority of boys enjoy throwing themselves into furniture, jumping off really high things and generally causing havoc wherever they go, I don’t accept that “all boys” do so constantly and with no regard for personal safety or the safety of the people around them. Nor do I accept that it’s “normal” to rub one’s face across any surface, constantly rub one’s hands on the legs, arms and head of loved ones, or jump on the bellies of family members who are minding their own business laying on the sofa watching TV and knocking the wind out of said family members, just because it’s enjoyable to hear their grunts. He thinks it’s hilarious. My bruised internal organs? Not so much. We’ve learned to be on high alert anytime Monkey Man is on the prowl.

DO regale me with an example of your own child/brother/nephew/friend down the street doing a similar thing but also acknowledge that it IS different than what I’m talking about.

I love hearing stories about other people’s kids. I especially love funny stories about them doing the crazy things that kids occasionally do. I think for me the simple change of “One time my son…..” from “Oh, my son does that!” shows that you understand the difference between the occasional act of lunacy and the day-to-day crazy that happens around here.

DON’T SAY “Einstein didn’t talk until he was 3.

OHMYGOD. If I hear this little factoid one more time I’ll scream. I’m very well aware that Einstein was a late-talker. But I doubt that he continued to be unable to answer simple questions other than those
with yes or no answers. My son is smart. He can use my computer and operate the DVD player. That doesn’t mean that he’s “just like Einstein.”

DO feel free to tell me about your own concerns about your child’s development and how it was resolved.

So many parents worry about their kids being on track. Isn’t that the huge focus of parenting nowadays? Is my kid crawling? Is he walking? When was his first word? Is he reaching his milestones on time?

I don’t know of a single parent who hasn’t had at least one concern about their child, and it’s nice to commiserate with others about those concerns. But it’s also nice to hear when a kid catches up. Your son didn’t walk until he was 20 months? I can definitely relate to that! But I can also relate to the fact that they did finally walk and you’d never know it now by the way they run around with their friends
and siblings.

I think the key for me here is that there's a difference between a blanket statement about Einstein – that, frankly, is moving into urban legend territory at this point (although we know he was a late talker) – and a personal story about one’s own child.

I understand that most people’s reactions come from a place of love and wanting to comfort. But you know what?

It’s okay not to know what to say.

Hell, it’s fine by me to say, “Wow. I really don’t know what to say.”

It may sound strange, but I am still in a place where I waffle back and forth between being okay with the diagnosis, and doubting the diagnosis, and some of these comments I’ve heard, unintentionally feed into that doubt. Later, when the reality of the situation hits again, it strikes that much harder.

So I hope this helps, lets people know that, once again, it really is okay to not know what to say.

Monday, June 13, 2011

Interview: Dana Commandatore of Rethinking Autism

Autism activist Dana Commandatore of is the mother of an autistic boy. She hopes for a better quality of life for autistic people and their families. Dana says, "Through acceptance and understanding we can make progress." We agree, which is why we asked to interview her about her site, and the provocative and much-needed autism videos she creates. From the home page:
All too often in the world of autism, celebrity and sex appeal are used to promote pseudo-science and personal agendas. wants to change minds, change the current media conversation and help give autistic people a more prominent voice in the conversation. Up to this point, certain celebrities and some parents of autistic children have dominated the media with their miracle cures and unsubstantiated theories on causation. This exploits autistic people, their family members and the public. Please join us. Share the videos, read the blog and sign up to be part of our emailing list. Let’s change the conversation one video at a time.
You've created a number of videos about autism acceptance and understanding. What inspired you to create them?

I was disappointed and frustrated by the media coverage of autism and the misinformation that certain celebrities were pushing that I felt a responsibility to at least try to get, what I considered to be, important information out to the general public. There is very little coverage of autistic adults in the media. I know there is an entire community of autistic adults waiting to be heard. I want to do what I can to help them be heard.

What is your ideal audience for your videos? Where have you been pleased to see them, where would you like to see them, who really needs to see them, in your opinion?

Good question. I think the general public needs to see them. I would love to see them played before movies (not the first set of Leeann videos -- they are strictly for and were mean to be shock and get attention -- not for children) as well as television. I would love for young parents to see them so they are not as afraid as they are now of an autism diagnosis. I have heard parents say: "That is my biggest fear [that my child is autistic]." I would much rather see parents hopeful that there is an entire community out there willing to lend support and inspiration.

What are some of your favorite moments in the autism videos you've produced?

There is a part in the Autistics Speak video that always moves me. David, one of the autistic adults who graciously lent his voiceover to the video, states, "Society should be concerned about my quality of life instead of preventing people like me from being born." It gets me every time. And then there is every other moment of every video.

What are some notable reactions to your videos from autistics, autism families, and other members of the autism community (professionals, organizations)?

It ranges from disgust to admiration. There have been some parents who feel I should have my child taken away from me and then there are many more who have thanked me for making a video about how they really feel. Many doctors, teachers, therapists and professionals have encouraged me to keep making videos. My favorite responses have come from the community of autistic adults who finally feel like someone is listening to them. Sure, there are some who disagree with my tactics and don't really trust my message. But overall the response has been humbling and inspirational.

Your videos put adults with autism front and center, as both role models and teachers. How did those working relationships come about?

After my son was diagnosed, my husband and I made it a point to seek out autistic adults. We wanted to learn as much as we could about their childhood and their relationship with family members. We knew our son was different and that we would have to learn as much about his world as he had to learn about ours.

Was acceptance and understanding always your approach to your son's autism? Or did you learn to embrace this attitude?

We always accepted our son, so nothing was different when we received an official diagnosis. If anything we were relieved. We now had a reason for his unorthodox approach to life. Not that we really knew what that meant, we just loved him. We never thought about curing him for we always assumed his behaviors were just part of him. We just wanted to make his life as happy and independent as possible.

Has your son seen your videos? If so, what does he think about them?

I don't think they interest him yet. He is only eight and not very conversational. I try not to make any videos about him for I think that is a decision he can make when he is older. Too many parents of autistic children put their child out there to be scrutinized. Back to the original question, he does love the music in the videos.

What do you envision as the ideal next steps for you, your autism activism, and for

I plan on writing as much as I can and getting as much exposure as possible. My goal is to stop doing for there will not be a need for it. Autistic adults will have a say in the laws and research that affect them and determine how they live their lives. The ignorance facing adults with disabilities is staggering. When the paradigm shift occurs, and there is no longer a need to rethink autism, then I can stop making videos.

Saturday, June 11, 2011

TPGA's Mission Explained, on

During IMFAR, HealthCentral's Jeremy Shane inteviewed TPGA editor Shannon Des Roches Rosa about the Thinking Person's Guide to Autism. Shannon talks about why we created TPGA, how our site and forthcoming book provide the "crash course" parents of kids with new autism diagnoses need (and which doesn't currently exist), as well as the importance of finding positive role models, community, and information as soon as possible after an autism diagnosis.

Jeremy also interviewed Shannon about Accepting Your Child's Diagnosis, and on iPads & Learning Devices for Teaching Kids With Autism.

Friday, June 10, 2011

Religion and Autism

These two essays were originally published in the Autism Society's magazine, the Autism Advocate. While the references here are for the Christian and Jewish faiths, many of the tips could be applied to other religions. We've had several posts in the last year about autism and religion, but we are always seeking to add diversity to our knowledge base. If you have an experience you'd like to share about faith, community or religion, we'd love to hear from you please contact us.

                                               -The Editors

The Christian Perspective
By Terri Connolly

The church experience is often one of generational tradition for many families. Other families recognize their need for a place of spiritual refuge and nurturing for the first time in their lives when they have children or at other trying times.

Christ's example of "agape," or unconditional love, is paramount to our understanding of the role of acceptance in the church. Too many parents and siblings, as well as the individual with autism, are asked to leave or feel so uncomfortable that they lose this most precious part of their lives, and at a time when they are most in need.

The behaviors associated with autism often present challenges for the family church experience, yet I often find myself wondering: "If not church, then where can an individual be accepted exactly as they are with unlimited love and inclusion?" Families of faith need to find a church where all of its members can be nurtured. By integrating the individual with autism as a regular member of the church, with resource help and community-wide education, the church becomes accessible to the whole family, and the family, in turn, is strengthened through shared faith experiences.

Tips to Supporting Inclusion
  • Initiate contact. lnitially, parents may want to contact the pastor or Sunday School teacher to introduce themselves and prepare them to provide a successful experience for everyone. Include information about educational goals and discuss communication methods.
  • Discuss your expectations. When attending a worship service, it would be wise to discuss with the worship leader what he/she might expect. In return, the worship leader should offer supports to the family, such as someone to stay with siblings should the parents need to leave during the worship service or to accompany the individual with autism to another comfortable place should he or she become distressed.
  • Be prepared. Most experienced parents know that all children and many adults become fidgety during church. Being prepared with a quiet object of concentration, such as a rubber band, pictures, books, or an object of visual focus, can be very helpful, particularly if it has religious significance to enhance the worship experience in a different way. Items that provide comfort and security at home might be made available at church.
  • Get acclimated. Since it is thought that many individuals with autism experience things holistically, attention should be given to the sights, sounds, and even smells within the sanctuary or classroom. A visit to the sanctuary and classroom in a church when they are empty might give the individual an opportunity to explore in ways that might be inappropriate when crowded. With special permission, one might also explore the organ or piano to prepare the individual for the sudden and sometimes loud sounds during worship.
  • Teach by example. The worship leader may comfortably acknowledge any distracting behavior with a simple, sincere acknowledgment. "So glad you could join our worship today, Tom," after which the worship leader continues as if Tom's participation is perfectly natural. The worship leader's acceptance is very important. Sensitivity and joint strategy planning are critical.
  • Develop peer partners. In order to help relationships and friendships blossom, peer partners who rotate responsibility for assistance can help to create a wide base of support for the individual while fostering a truer atmosphere of inclusion.
  • Help the individual feel welcome. Several adults or children should assume quiet lay leadership roles by greeting the individual with eye contact, a "Hi, Bryan," a high-five, a popular stylized handshake, or a pat on the shoulder. It is often this simple, yet critical initiation that communicates the gospel message. A kind of "underground" effort of greeting creates a wonderful atmosphere of acceptance.
  • Stand firm. Finally, the family should stand firm in their belief that we all have a place in the worship experience. When one member is missing, the experience of all is diminished.
Younger Children and Sunday School
In being part of the community of faith, all individuals need the opportunity for active participation. Doing what others do promotes a feeling of inclusion. For children in Sunday School, the following ideas have been successful:
  • Use the Bible. Encourage the child to hold the Bible open to the appropriate page. Use a bookmark or guide the child's hand to follow as others read aloud.
  • Ensure participation. Pass a ball or talking stick while sharing or learning parts of a memory verse. The child with autism is then assured a chance to participate with the help of another to communicate the message. A notebook from home could tell about experiences and add prayer requests, if necessary.
  • Rotate buddies. Remember to encourage multiple friendships and acquaintances by rotating peer escorts and buddies.
  • Use visual cues. Use extra visual cues, such as pictures, during a story at any age level. Quietly reword a story as needed so that it is understandable to the individual.
  • Encourage imitation. Encourage, but do not force, imitation of body postures, such as bowing one's head and clasping hands for prayer, standing to sing, and looking toward the person who is speaking. This will certainly vary with the individual, but it helps to create an attitude of prayer and participation.
Older Youth and Participation
Older youth and adults with autism can participate partially or fully in different ways, just as most youth and adults without autism. Encouraging participation and service to others is important for the individual as well as the community.

The following suggestions are based on the approach that was used with a particular individual with autism:
  • Greet people with a smile, and hand out service bulletins.
  • Gather up the bulletins and papers left in the pews after the service, restoring order to the sanctuary.
  • Carry the offering plates to the safe following the service. 
  • Deliver crackers and juice to the little ones in the preschool classes.
  • Collect and deliver Sunday School attendance records to the attendance clerk.
  • Assist in the delivery of cards or food to homebound individuals.
  • Participate with deacons in the packaging and delivery of food and toys to the needy during the holidays.
Christians celebrate the birth of Christ with much pageantry, tradition, and cultural ritual. Augmenting the typical worship service adds to the richness of meaning, while making the celebration more personal.
  • Talk about the spiritual aspects of the Christmas time in normal daily conversations. Describe the upcoming ritual and pageantry through simpler methods, such as through pictures, role-playing, and storytelling.
  • Bring a special item that might represent some element of the holiday celebration that can be held during worship. It may be a piece of textured "swaddling cloth," a shiny star, nativity figures, or cinnamon sticks. One symbolic item brought forth at the right moment may become part of the holistic experience of celebration.
  • During the service, follow along in the bulletin and prepare the individual for the moment any loud, dramatic music is to occur. Covering the individual's ears and gradually uncovering them may work. However, be prepared if does not; what is musical to one person may be cacophonous to another.
Giving Gifts - A Unique Approach
One church that I know has a wonderful celebration in early December where they gather to recognize the natural talents and spiritual gifts of its members -a bit of a twist on the gift-giving theme. From young to old, with talents that range from the artistic and musical to gifts of compassion and hospitality, many are recognized and encouraged. It would be a wonderful tradition for any church to duplicate.

As for the individual with autism, I know of one individual who has amazing attention to visual detail, which could be displayed with examples of his or her favorite pictures. I know of another person who has the warmest smile I have ever seen. This friend also demonstrates amazing altruism, and would make a wonderful greeter.

Community Responsibility
Introduce the concept that the responsibility for every member of the congregation is a corporate, shared responsibility. This is a true fellowship. The participation and inclusion of individuals with autism should not rest on the shoulders of one or even a few volunteers who are "trained" or ''assigned." Children and youth will need guidance to facilitate inclusion, as will many adults. Gradually, the focus of special assistance should fade as everyone accepts shared responsibility.

It takes effort and intention to help a person with autism discover his or her gifts. But in doing this exercise, we all would be challenged to focus on what the individual can do. By providing for inclusion of one individual, we meet the needs of each individual in the family by allowing their full participation in a faith community.

Terry Connolly is the mother of five children and an active member of the Highland Baptist Church in Louisville, KY. She has a Master's degree in Special Education and provides consultation and training in early childhood development.

The Jewish Perspective
By Joshua Weinstein

Excerpt of a letter from a parent to the Shema Kolainu School
Before Passover, my other children enthusiastically presented me with the projects they had made in Yeshiva (Hebrew school). My heart sank when my son who has autism and attends a public school brought me his book bag, which I opened only to find the Easter egg he had painted in class. My son knows how to say the "Shema" prayer, but can also tell me stories about Santa and the Reindeer.

We have accepted that God has chosen for us to have a child with autism. When he became of school age and we sought to provide him with a Jewish education, we were extremely disheartened to learn that not a single school program existed that would serve the needs of Jewish children with autism. Doesn't each and every Jewish child deserve the opportunity to receive a Jewish education to the best of their individual abilities?
This was my first introduction to the pain and feelings of a Jewish parent on her inability to send her child to a school of her choice that would help keep the family identity. There were no Jewish schools using ABA (Applied Behavior Analysis, an intensive behavioral intervention technique) for children with autism anywhere in the United States.

Since I founded Shema Kolainu, the first Jewish school using ABA on a one-to-one basis for children with autism in the U.S. in 1988, we have been flooded with phone calls from heartsick parents on a daily basis. Although not a religious school, Shema Kolainu fulfills the need to learn about Jewish culture and heritage as well as focus on the bilingual needs of its students. Our programs and services are designed to accommodate a broad range of functional levels and varying degrees of disabilities. Students are taught about Jewish holidays through music and arts and crafts, to give tzedakah (charity) at circle time, to say and read the Aleph Beth (alphabet), and are taken to a matzo bakery to bake matzos before Passover, to name a few.

The official name of our school is Shema Kolainu, which means Hear Our Voices. Hearing the voice of the child and the family means assisting the child to reach his or her potential, both in an academic setting as well as a community setting. It is not enough for a child to achieve in the classroom and then not have the skills needed to be successfully integrated into their community and partake of his or her own culture and heritage. This is extremely important and beneficial for the individual with autism, the family, and the community at large.

Rituals and Individuals with Autism
Children who have autism spectrum disorders benefit greatly from consistency. The Jewish religion has practices such as daily prayer and weekly ceremonies in a synagogue. One mother told me how her 16-year-old daughter who has autism attends synagogue each week, uses a prayer book, and even answers "AMEN" along with the congregation. A local synagogue gives a young person with autism the honor of collecting the prayer books after services.

Below are other examples of activities in which children with autism may be encouraged to participate:
  • opening and closing the ark before the Torah (Jewish scripture) is read
  • helping the reader turn page numbers
  • assisting in preparing and setting up the Kiddush (Sabbath reception)
  • helping to put away the prayer shawls after services

Familiarity with these practices from an early age promotes greater inclusion into the community as adults and helps some children to better understand their cultural and religious practices.
Special Ceremonies

Ceremonies can be a wonderful and meaningful experience for both the child and his or her family. When a Jewish child turns 12 or 13 years old, he or she undergoes a ceremony called a Bar Mitzvah (boys) or Bat Mitzvah (girls), which symbolizes entrance into the realm of adulthood and the observance of mitzvahs (positive deeds).

A child with autism, depending on his or her functioning level, can participate in a variety of ways:
  • some may be called to read from the Torah
  • others may recite a passage from a prayer book
  • still others may recite a Bar Mitzvah speech
One family chose to make a Bar Mitzvah for their son with autism. They invited family and people who had made a difference in their son's life over the years. The mother says emphatically that this was the best decision she has ever made. Her son enjoyed the ceremony and reception, and the family felt comforted to know that they were surrounded by people who love and support them. Their son's favorite activity is to look through his Bar Mitzvah album and watch himself on the video.

The holidays can be a stressful time for a person with autism because it is a breach in their daily routine. If a child is educated about the holidays before they arrive, he or she will be more comfortable and feel at ease. This, in turn, will alleviate much stress from the family.

It is important, therefore, to remember to apply the techniques used to involve the individual with autism in daily activities to these special activities. The individual with autism may be asked to participate at some level in many rituals or ceremonies, such as:
  • the weekly Sabbath festivities in the home
  • the Sabbath festivities at the synagogue
  • the Passover Seder
  • Chanukah candle lighting
All of these activities create a bonding between the parent and child and the community at large.

Judaism and Special Children
Judaism has strong traditions regarding special children. It is said that Chazan Ish, a great Rabbi, always stood up when a special child entered the room because he said that their souls are lofty and pure.

Even so, a local synagogue may need some guidance and sensitization to the needs of its special congregants. If there are issues that arise concerning a person with autism or other special needs, it is a good idea to set up a private appointment with the rabbi.

Issues that can arise may include a child's disruptiveness during services, inclusion into youth group activities, and fostering greater understanding and sensitivities from members of the congregation toward the population with autism.

Inclusion of people with autism and other disabilities into our community and places of worship is beneficial to us all. We can all learn a tremendous amount from them about patience, perseverance, dedication and sincerity.

When we introduce an individual with autism into a religious community and help them relate to the holidays, customs and celebrations become more meaningful to everyone. This, in turn, helps those in the community understand the child better as he or she performs certain rituals together. This brings parents and siblings closer to their child with autism, and benefits both the family members and everyone close to them.

It may sound cliché, but the following statement is both apt and true: "Families that pray together stay together."

Joshua Weinstein, M.Ed., MBA, is the President and founder of Shema Kolainu - Hear Our Voices, the first Jewish school for children with autism in the U.S.

For more information about the Autism Society find them on Twitter or visit their website

from the editor: We have the luxury of having family that's clergy; when we go to church we are truly welcomed with a warm heart. We used to take Jack out of the sanctuary any time he made a sound that was out of place, because as much as he loves the music, singing and Uncle Joel talking on a microphone, we have always been sensitive to the needs of people around us. As it turns out, every time we left that back pew, we were missed. It wasn't until this Easter, sitting in the front row...the whole service, Jack's vocalizations and all, that we finally realized how welcome we were. At some point in the service, Pastor Joel made a powerful statement, and though I can't remember what it was he said, I'm sure my son remembers, because in the silence, Jack (who is generally non-verbal) said, "Amen." When Joel comfortably acknowledged Jack by name and moved on in his sermon I realized that the only concerns, the only things holding us back from being full participants were our own unnecessary insecurities. Jack was fine, the pastor was fine, the congregation was fine. Gathered in the narthex later, the sweets of Easter scattered about, at least four families made a point to tell Jack that it was great to have him stay for the whole service. - Jennifer Byde Myers

Wednesday, June 8, 2011

Kid Manual: A Little Mom Snark

Carrie Arick

Today, I have been working on updating my family calendar, whittling down our to-do list and brain storming exactly how I am going to explain Asperger’s syndrome to my sister who will be staying with us while the husband is in the hospital and during his recovery process. It is all a little overwhelming (I seem to use this descriptor on a daily basis these days) seeing how our calendar is expanding into next year July, my to-do list keeps having baby to-do lists and nothing about autism seems to be simple. Being tired of being overwhelmed, I am starting feel a little snarky and well, it does not take me much to feel irritated.

Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers, and things I need to remember all over the place. I have five lists to remind me that I need cat litter, dish soap, and a three ring binder so that I don’t have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family’s master phone list, which I have two versions of -- one on the computer, one hard copy.

I have three calendars. Three. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011 allowing me to highlight the important dates.

I am that bad. I need the three calendars. If I didn’t have them, I’d be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband “I dunno, look on the fridge.”

The Kid Manual (aka Welcome to Our Asperger’s) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says “I hate you,” he’s really saying “I lack the ability to process and handle this situation at this particular moment in time?” How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?

Asperger’s affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to “put him to work.” My stomach dropped. You can’t just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big but to this statement: Asperger’s defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it’s not filthy either), but I’ve learned to accept the fact that the kid’s favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home.  For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren’t what one would consider typical.

My mother, when she thought she would be able to stay in our home during my husband’s surgery, told me I shouldn’t worry because she wouldn’t put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, “Grandma, stop talking to me!” in a not-so-polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He’s not saying it to be disrespectful; he’s just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We’ve worked tirelessly to correct this method of communication, have taken our first steps into the world of “I require a minute to process this, Mom, please” and I don’t need it undone. The kid doesn’t need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met.  And meeting that “stop talking to me” rude-sounding statement with anger is a recipe for a full blown autistic meltdown.

I need my family to accept that my son is autistic; that he has Asperger’s and will never grow out of it, but rather into it -- he’ll meld who he is with the world he lives within to make his life work for him. I need them to accept that it’s okay to be different, to meet a child’s needs differently than they did with their own children; and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don’t have a back-bone. Or something.

I have a child who does not function like typical children and that means I do not function like a typical mother (and ‘typical’ would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neurotypical children and trust that I know what I’m doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn’t take long for someone to undo all that hard work -- hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).  

The snarky part? Well, that’s me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know it's autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children’s brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger’s told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here’s a medical release you can take to said doctor to discuss the matter further.

Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family’s (constant) parenting advice. It would start with “If you think you need to tell me what I need to do with my Aspie boy based on what you did with your typical kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:
  • Uh-huh, I understand what you are saying. Thank you for the input.
  • I have tried that, thank you, but it did not work for us.
  • It’s a sensory issue, so it requires a different approach. I appreciate your concern.
  • That is a typical behavior for Aspie kids, but we are okay with it.
  • Relax about it.
  • He’ll live.
  • I’ll live.
  • You’ll live.
  • That concern is on our master list. We are addressing the concern that precedes that one in order to better address the one you speak when the time comes in order to achieve the best outcome for my boy.
  • In the big picture, we are okay with that. I’m sorry you aren’t.
  • That service is unavailable at the moment/we are wait-listed/it is out-dated/it is not for his particular disorder.
  • If he doesn’t like it, it’s okay. I don’t like seafood/country music/fleece/spiders/cotton balls. It’s okay to have preferences and unique tastes. Its okay to not like certain things and fear stuff. Forcing it on him is not okay. He is an individual. Please respect his boundaries, not just as an Aspie kid, but as a human.
  • Please re-read what Asperger’s syndrome means for my boy. You obviously missed something important, which is okay because this isn’t easy for anyone.
  • It is really okay for him to not want to hug/be tickled/be touched/have his personal space invaded. It’s not you, it's him and it will not cause sudden cardiac arrest. 
  • My name is on the birth certificate and he lived inside my body for 10 months (yes 10 months, that 9 month thing is a lie!), plus I’ve spent 10 years being his mom, so I am using that power to veto your suggestion and/or assertion.
  • My child is not just like your child. If he were, he’d be a clone. So far as I know people have not been cloned yet. I’d be happy to parent the cloned version of your child or vice-versa when the technology is available. At that point, we can test your method. Until then, I respectfully decline to try it your way.
  • Really. If you do not think he needs medication for his ADHD I understand. You go ahead spend the day with him un-medicated, just make sure the first aid kit is stocked and remove any object that can be broken or cause physical damage to a person or my house. As a matter of fact, take him to your house.
  • You can’t convince me that 500 grams of sugar is good for any child. Yes, sugar tastes wonderful, but giving too much to a child is like feeding a Gremlin after midnight. If you are confused, please watch the movie before deciding to give my child a lollipop the size of his head and insisting he eat it all in one sitting. (You might want to watch the Exorcist as well.)
Somehow I know snarkiness wouldn’t be received well, yet it makes me feel better to get it out of my system. Ultimately, I just want my child to have the best support system possible while his dad is having major surgery. I don’t want his Asperger’s to minimize the fact that this is a scary and overwhelming event for our family, especially the littlest person in it. I appreciate what my family is doing to support us and the kid. With the manual, the kid and acceptance of his specialness come first because without that, no one other than his parents can address his needs. The point in making the Kid Manual is to make this whole process easy for everyone, but most importantly the boy. It’s his dad, after all.

Monday, June 6, 2011

Lessons from Season 10

Joan T. Hocky
Expectation: The act or state of looking forward or anticipating

Surprise:  To strike or occur to with a sudden feeling of wonder or astonishment
Two stories:

1. A girl grows up in Port Arthur, Texas. On the surface, she has a nice, middle class life: dad is an engineer, mom is a registrar at the local college and she has two protective older sisters. But life is anything but easy. She’s overweight with acne and long stringy hair and the kids in school all tease her for being ugly and weird. She spends hours every night holed up in her room, listening to Bessie Smith sing the blues and imagining life as an artist or musician, somewhere far away from where she lives.

She finishes high school, goes off to college (UT Austin, the flagship school), but things are no better—even in a big university town. Lonely and miserable, still dreaming of life as a musician,she escapes to California, where she falls in with a group of rockers, lives on a houseboat in Sausalito, starts singing with a band.

The fact is, the dream has legs: incredibly talented and impassioned in performance, she headlines a band that plays to growing audiences, eventually appearing at a big music festival. She sings her heart out, and people listen; all sorts of people. Even well-known performers are riveted by her raw talent. The girl, now woman, becomes famous.

Ten years later, now a seasoned performer, she decides to go back to Port Arthur for her 10th high school reunion. The great return, she imagines. Acclaimed singer and recording artist goes back home and is celebrated for who she is, who she has become. They will see the weirdness now shaped into a fine eccentricity, her former ugliness, now just unusual, will be interesting, attractive even. They’ll be so proud to say she was one of their’s.

But the homecoming is a major disappointment. She is not embraced or welcomed; she is shunned, still misunderstood by her small town peers. Dejected, she goes back to California...and months later, while recording what will be her final album, she is found comatose in her hotel room, dead from a drug overdose.

2. A boy grows up in Santa Cruz, California with his parents and two older sisters. His dad, a talented bass player and jazz musician, dies of a drug overdose when the boy is only nine. He struggles socially and academically, and in middle school is diagnosed with both Tourette's and Asperger's syndromes by doctors at Stanford Medical Center. The facial tics and social uneasiness are so discomfiting, and the teasing of other children so relentless, that sometimes he escapes school and disappears to a nearby park, where he sways on the swings, soothed by the motion.

Amidst his struggles, there is one saving grace: he loves to sing. Through all the teasing and loneliness, he has his voice. He joins a music theatre group. It’s hard for him to be part of the group socially, but when on the stage—a place that makes most people uneasy— all the awkwardness and tension melts away and he stands radiant and comfortable in his body.

School is still hard, and he drops out in 11th grade. But he keeps performing. He stars in plays, becomes the lead singer in a band, tours the region. Then he tries out for a national singing competition. Suddenly the boy— now young man— is on TV. The judges praise him. The audience loves him. He has fans, complete strangers all over the country, who cheer him on every week.

Buoyant and confident, he eventually places 4th among thousands of contestants.

A big celebration is planned in Santa Cruz to welcome him home. He visits the theatre groups where he got his start, and then is taken through town on afloat in a parade to the boardwalk where 30,000 people have gathered to hear him perform. The painfully awkward, once bullied boy is now a hometown hero.

There are so many common threads in these stories, similar hardships and passions; a trajectory of triumph and disappointment, talent discovered, dreams played out. Stages, where both found peace they knew nowhere else.

“There is a oneness with the audience,” the girl says.

“The awkwardness dissolves,” the boy explains.

And yet such different endings. What does it tell us? The most solid foundation can’t save some of us, and the harshest challenges can’t stop others. Grace, and timing, and luck, matter. Life can exceed our expectations. Or never reach them.

Janis Joplin died of a drug overdose at age 28. The album she was recording, Pearl, was released posthumously, becoming the best selling album of her career and one of the most acclaimed of all time. James Durbin, a 22 year old contestant on American Idol, is very much alive, still adjusting to life after the homecoming.

Stories. Everyone has one, my older son tells me. He means the brief narratives—captions really— of all the contestants: the Italian girl from Queens who always wanted to perform, the boy from the rough streets of Compton who sings like an angel, and the country cowboy who loves his mama, horses, and music. There is more to their stories than that, I try to explain, it’s just manufactured copy, a way to make each contestant a sort of character. But I stop myself – the critique: of the competition’s premise, with its improbably older, non judgemental judges and the tween and adolescent voters, the played out contests and results - is endless, and completely valid. But none of it matters, none of it except for the fact that we are sitting here together.

I could say that I only watch as a way of bonding with him, the 12-year-old going on 17 who lives in my house. And that is true, up to a point, but once I meet Tthe heavy metal rocker who has overcome hardship, I’m a goner. Bullied and teased throughout his childhood. “I have Tourette's and Asperger's,” he says, “they don’t have me”.

As the mother of a 10-year-old boy with autism, my response is visceral. I don’t for a moment even imagine that my son will some day be up on a stage singing Judas Priest songs to a roomful of screaming adolescents. He has limited language, communicating with the simplest of words and phrases, light years away from his peers in any measurable way. But he has perfect pitch and perfect memory for songs, and the sweetest voice I’ve ever heard. If we lived in some other culture, some African tribe or rural community with its own customs and folk rituals, his deficits might not define him. They’d see him for the beautiful brilliant boy he is, they’d know the man he could become. But I holdout hope that even here, in our language-laden, fast-paced technological world, he can still transcend his labels.

“He’s incredibly talented, but never in my wildest dreams could I imagine him doing this,” they say. ‘They’ are the music teacher, the theatre director, the family friend, the band mate. Astonishment. That is the common thread— to quash expectations and leave people’s mouths open. “I never thought he could do that,” they’ll say, whatever “that” is— the thing with feathers, the thing that defies assumptions, that leaves people speechless.

Because it’s hard being underestimated, or so I imagine. It’s hard being a parent to the underestimated. It’s hard having dreams that aren’t shared, like a secret locked away in your room. You know, you feel the potential, but can you convince anyone else?

And so I, along with my older son— the 12-year-old I sit and watch with— like to hear this story, the whole arc of it. To see the culmination of a dream manifested. The rest of them can be characters, or caricatures, the product of an overwrought TV drama. But just let this one story be real: that life is full of wonder, and everyone— anyone —can surprise you.