Wednesday, February 29, 2012

Why "My Kid Isn't Like You(rs)!" Isn't The Point

Melody Latimer 
www.ASParenting.com

There are re-occurring themes among the Autism/Autistic online worlds. The most current, though it comes and goes, is when parents of Autistic kids insult Autism because of their child’s difficulties, summed up by “You can’t understand because you’re high-functioning/have Asperger’s.”

I’ve wanted to rebut this several times (and often do when getting into a comment exchange on other blogs):
  1. No. I am not like your kid. Because I’m an adult.
  2. No, I am not where I’m at because my parents helped me. I didn’t receive any Special Education or 504s or anything.
    1. Actually, when I went to college, this is where I found that I couldn’t even stand on my own two feet.
    2. I have had to have several years of therapy and medication, much thanks to my husband, to overcome my previous years.
    3. For years, I couldn’t even do household chores because of the resulting, built-up anxiety and stress.
  3. Yes, I do know what it’s like to have a child who doesn’t speak.
    1. Daniel didn’t speak until 4.5 yrs.
    2. Daniel’s speech is sometimes even now unintelligible by me, and most of the time by those who do not interact with him on a daily basis.
    3. It can take Daniel up to two minutes to form a six-word sentence. This is greatly decreased in the past year since getting his iPad.
  4. Yes, I know what it’s like to have a child who still has to wear a pull-up.
    1. Despite being a 2E child, Stephen is not fully potty trained.
    2. I’m not sure he even feels it.
    3. He will be seven in just over a month.
  5. Yes, I know what it’s like to have a child who elopes.
    1. The first week after we moved back to Texas, Daniel escaped from the house and walked to the grocery store around the corner.
    2. Daniel will run away from you and every other adult without paying attention to what’s in front of him.
    3. He has nearly been hit by a car several times.
    4. We now take precautions.
  6. No, just because I believe in Autism Acceptance doesn’t mean I refuse to get help for my kids.
    1. Both boys have IEPs.
    2. Both boys had early intervention.
    3. Both boys continued with OT, ST, and Daniel PT after aging out of EI.
    4. Daniel has had ABA to deal with dangerous behaviors.
    5. Stephen has had DIR/floortime to help with his imaginative play skills.
    6. No, we no longer do therapies outside the school directed by a professional. (I decided at some point, kids need to be kids, no matter their disability.)
    7. Yes, both of my children are on medications. One for ADHD, the other for sleep and calming issues.
  7. Yes, I do know what it’s like to not sleep at night because my child is awake all night.
  8. Yes, I know what it’s like to be afraid of my child because he’s become that violent.
  9. Yes, I know that all we want is what’s best for our kids.
    1. That does not mean I will chelate them.
    2. …cure them.
    3. …destroy their sense of self by removing all traces of Autism.
    4. …destroy their self-esteem by saying their reactions to things are wrong.
    5. …drug them to control their behaviors.
  10. Yes, I know what it feels like to watch my child bang his head so hard that he could cause permanent damage.
Here’s what I don’t know ... I don’t know why this would make me hate Autism. I was so thankful to know what it was. What was causing my children not to speak. What was causing them distress and unrest. I was happy to know there was something I could do. That’s what the Autism label is to me. An answer to “what’s going on.”

What I do know is that there is no amount of hate of Autism that will make your child better. There is no amount of vitriol put into treating your child that will not radiate to your child. There is nothing you can say that I have not been through myself, with one of my children, or have seen one of my friends go through.

What you’re going through may have different manifestations. What you’re dealing with at this second may have so much stress attached to it that it seems like there’s no end in sight. But you can get through it. You can accept your child from where they’re at. And once you do that, you can truly start to help your child because you’re not going to be forcing a round hole through a square peg.

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Melody's post was previously published at ASParenting.com

Monday, February 27, 2012

Loving Lamposts: A Movie Review by TH

TH, age 10, Autistic

The title of the film is “Loving Lampposts.” I was somewhat weirded out by the title because it was sort of a strange name for a movie and I had a particular interest in lampposts myself. And I knew it had to do with a syndrome called “Autism.” I for one am very familiar with this term, because I myself have it.

Well, the movie revolves around this kid named Sam and his love for some particular lampposts in a local park. His dad wonders why Sam does all of the things he does and also wonders: “What is Autism, and why does it do the things it does?” Well, a large portion of the video is devoted to answering that question and others like it.

Well first of all, there are the smart people who believe Autism is a gift, and it should not be treated with hate, and then there are the people who believe that Autism is a disease that makes children, pardon the term, idiots. Well, those people all have different opinions about Autism, and I think it’s pretty obvious who is right and who is wrong. “Living with these kids is like Hell.” “Autism is a disease that is killing hundreds right now” “It’s all the vaccines’ fault.” Well the answer to these statements are no, you’re an idiot, and nooooo. These people think that Autism is a disease and that they need to find a way to cure it so that there kids can be “neurotypical.” Well, to tell the truth, no one is neurotypical and we all have at least one thing that we struggle with.

The term “Autism” refers to someone who is dumb, crazy, and sometimes even someone who cannot communicate verbally. That was the definition of Autism in the dictionaries back in the 1950s. Well, that definition is wrrrooonnnggg! The real definition is “someone who is gifted but also has struggles mainly with socializing with other ‘normal’ individuals.” Well, Autism has its ups and downs, but I personally think that it has more benefits than struggles. There are some really, really, smart people out there who are Autistic and that proves one thing: Autism rules!

Well, anyway back to the movie! So about those people who think that Autism is a disease, well they are part of an organization called D.A.N. This group believes that Autism causes “gastro intestinal disease” and the only way to “cure” Autism is to feed your kids stuff like fruits and vegetables so it will go away. Well, some of these people have been doing this for years now and they say that “he’s almost cured” or “she’s almost fixed.” Well, I think that’s a ton of baloney right there and I also think that I have a better, more logical answer: THEY ARE MATURING.

For some backup to that theory I have myself. Well, I used to make way more noise and flap way more than I do now. Now I only flap like two times per week [Ed. note: This is somewhat of an underestimation]. So, a lot has changed during my lifetime, so let's get back to the movie! So, by this time in the movie we have seen many Autistic people (some of whom my mom knows.) Well they all said the same thing: They are happy and proud to be Autistic and they don’t care what all those people say about them. This marks the end of the video and it looks like Sam’s dad finally found the true meaning of the term “Autism” and that it is truly a gift, not a curse!

THE END

Friday, February 24, 2012

Two Stories: Autism's Financial and Racial Limitations

Kerima Çevik
theautismwars.blogspot.com

Several years ago, I attended a meeting of parents and care providers to discuss the lack of county services available for their loved ones on the autism spectrum. At the meeting, an African American medical professional told me something that still gives me pause: "Autism is a disability for the rich," she said. “Only the wealthy can afford the costs of the intensive early interventions we as parents need to help our children succeed." She continued, “As African Americans, we are disproportionately caring for our children on the spectrum as single parents, with limited means, and are dependent on institutions like our public schools to give whatever supports they can."

As I continue my three year fight for appropriate supports for my own child, I ask myself each day, “Was my acquaintance correct? No matter how diligently I try, no matter the effort I make, will I be unable to provide my own child with the help he needs because of financial and racial limitations?”

Two stories show this disparity of care, resources, and options in a way that leaves me with heartbreaking concern. A Journey into the World of Autism is a series of photographs with commentary, about an against all odds, full on battle for the dignity and civil rights of a 14 year old African American boy, Daniel Tuttle Jr. Daniel was given a diagnosis of autism when he was 2 years old. He never received early interventions or any support services. His battle for services is still being fought by a woman who is not his mother. She was his first daycare provider as an infant; when she heard Daniel's mother was out of work and overwhelmed trying to manage his care, she did not hesitate to go through the process of becoming his care provider.

Autism Lives Daily in Our House briefly outlines the story of Jack Drinkwine, a white child diagnosed with autism who is receiving intensive interventions and supports. He has teams of medical and educational professionals working with him to improve his ability to navigate his world. Jack's mother, a university professor, discusses the combination of therapies and supports paid for by a combination of funding that Daniel Tuttle's care provider could never hope to achieve.

Daniels is homeschooled and sent to a speech therapist. Daniel's only other therapy, administered by his care provider, is a GFCF diet and the basic set of the shoebox task system, the foundational exercises in the TEACCH method. Daniel's care provider continues to try to place him in a safe educational environment where he is able to adapt to the classroom and receive at least minimal services and supports. Meanwhile, Professor Drinkwine advises other parents to acquire the intensive interventions for their children that she has, never considering that many parents and care providers do not have the resources available to them that a family with two working parents -- a university professor and a high ranking military officer -- does.

Is this disparity of service placing African American children on the spectrum at risk for more confrontations with aversive behavioral management techniques, fewer educational and therapeutic supports and a greater risk for either institutional care or catastrophic encounters with the criminal justice system as adults? It is a chilling thought for me as I look at my dark skin and my deeply autistic son.

Please read both articles and let me know what you think:
More on Daniel Tuttle Jr. from DC & NYC Photographer Eli Meir Kaplan: Against the Odds

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This article was previously published at theautismwars.blogspot.com

Wednesday, February 22, 2012

The Morality Police: Honor Codes and the Tattle-Tale Aspie

Amy M. Murphy
www.aspergersthealien.blogspot.com

By Beijing Patrol from US
 via Wikimedia Commons
I'm not going to beat around the bush -- Aspies love to tattle and point fingers at evildoers. Driving with an Aspie one can be sure if the stated speed limit is exceeded there will be words.

Both my son and I consider ourselves to have a code of honor which is probably higher than most. We believe in rules, laws and a certain high standard of everyday conduct. He has remarked, more than once, that his aberrant behavior of a year and a half ago was more damaging to his psyche and personal pride as he broke his own moral code, than the whole jail/ prison sentence thingy.

We like to attempt to hold others to our over-zealous standards. I made an excellent safety in grade school. I loved "patrolling" and reporting the tiniest malfeasance. If anyone was cheating on a test, the teacher could count on me to report this.

Looking back to my teens and early twenties,  my own tattling behavior was was completely out-of-control, overboard, and highly unnecessary. Grade-school tattling is pretty much accepted, based on age and level of maturity, but when you hit twenty, it's time to sit down and have a very long talk with yourself. I am not the world's morality police. My moral standards can be as high as I want, but I am no judge or jury. Yes, if I see an innocent being harmed, I will do something about it and report it, but overall, I definitely have an overly-zealous streak that needs containing.

I have learned what are little infractions and what are big ones ... who am I kidding? ... somewhat. I try and let the little things go and allow the driver of the car to decide her fate. As well as understanding it is up to the teacher to ensure no cheating is done, not I.

I must say that I endured quite a bit of ridicule, rightly so, at more than one place of employment for my petty-infraction reporting. Tattletales are not held in high esteem and this whole wanting to get everyone to do the right thing, at my intense level, is nothing but detrimental and should be analyzed, dealt with, talked about, and abolished.

When Eldest was in school, he was also so thrilled to share his "report" on evildoers at least once a week. Now that he is 19, I sincerely hope he has gotten over that.

If I have questions, or am stymied as to if such-and-such is a serious, reportable action, I have learned to ask at least one other trusted friend for their opinion. That seems to work for me these days.

Why do we with Asperger's feel so very compelled to tattle? Because it screws up our sense of order and balance. Rules are to be taken seriously and protocol should be followed to the letter. One lawless individual causes us chaos. One person who gets away with something means all people can do as they please. Maybe, amongst this issue alone, we would dearly love all to adhere to our principles because it makes the outside world a safer, more predictable place. Really, we just want safety and security.

Aspie kids ... yeah, they really can't help it, but definitely address the issue.

And for goodness sake, drive the speed limit, use your turn signal at fifty feet and make complete stops at stop signs! Geez.

This essay was previously published at www.aspergersthealien.blogspot.com

Monday, February 20, 2012

Separate Vacations

Shannon Des Roches Rosa
www.squidalicious.com
www.thinkingautismguide.com

Sighting San Juan IslandWhen we told people we were spending a week on a summer family vacation with our girls -- but without our son Leo, who has high-octane autism, responses varied. The best reactions stayed positive without dwelling on the details of our abandonment: "Wow, that sounds like fun, all that time in the San Juan Islands!" More well-intentioned reactions stoked my already-raging guilt-fires: "Well, you know, those girls really deserve a break, and so do you -- it's about time you had a regular family vacation."

I know those latter folks meant well, but it's amusing to me that, because of his autism, sweet-natured Leo is assumed to be the kid we need a vacation from -- when in truth it's his fiery, defiant, bickering sisters who are currently draining the parenting lifeblood from my veins.

Still, I felt guilty leaving Leo behind. I kept telling myself we weren't excluding him -- he went to his beloved camp that week, so it didn't matter to him whether we stayed home or circumnavigated the globe. But we also were spending a week on his grandparents' boat. Which he loves. Loves loves loves. That seemed sneaky and uncool.

Here's where the guilt-flames turn to bonfires -- we planned a completely different vacation without Leo along. Instead of spending two nights on the boat as we did with him last year, we stayed afloat nearly a week. Instead of sticking to the waters near the home port in Lake Washington, we sailed through Seattle's locks, into Puget Sound, and all the way to Orcas Island.

It was glorious. My in-laws are spectacular hosts, we were on a damn boat, y'all, and the girls managed to mostly rein in their cage match tendencies. I also told myself we were scoping the area, to see if it would be reasonable to bring Leo to the Islands next year. Still, it was not always easy to surrender to the bliss of the San Juans' straits, vistas, pottery studios, and orca sightings while aware that our family was minus one. (Though my in-laws' generosity in sharing their lovely wines helped.)

I know Leo was fine, too. Better than fine -- the camp had Jennyalice on tap should Leo need a local to help him out or come get him, plus when I came back from Seattle to pick him up, he was having so much fun that he made a stink about coming home. And I really don't think he would have enjoyed our version of a boat trip -- he's not ready for an nautical excursion of that length, plus quarters on boats are tight; they're not ideal places to soothe a homesick autistic boy out of a decibel-heavy meltdown. But taking our family to Orcas and staying on the islands themselves? Now that I've seen them, I think that might work for Leo.

So we enjoyed our surreally wonderful boat trip, while I tried not to talk about how guilty I felt for leaving Leo in the Bay Area, or how worried I was about all the things that could possibly happen in our absence. We lounged at restaurants whose menus our selective eater Leo might not appreciate. Seymour and the girls took long, languid kayak trips to places where our little fish Leo might have been tempted to jump overboard. We lingered at Friday Harbor's Whale Museum, which would not have impressed Leo at all. We had a great time, enjoying our vacation for what it was, missing Leo and pointing out the things he would have liked, considering how to make the San Juans possible for him.

And then, five weeks later and after BlogHer '11, we did take a full-family vacation. In San Diego, the most Leo-friendly town in California. Where we could stay with my mom (another spectacular host), and walk to the beach every day -- or twice every day. Where we know fantastic respite workers who think Leo is dreamy. Where wonderful organizations like Surfers Healing will take our boy out and show him how to ride the waves on a a longboard. Where we were happy, all five of us -- even though my husband and I were also exhausted. But it was a good exhaustion, an earned exhaustion, an enviable exhaustion.




I don't feel guilty when we go on trips with Leo while his sisters are at sleepaway camps. I really need to get over that. One more area where the issues that need working through are mine, not my son's.

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A version of this post originally appeared at BlogHer.com. Shannon spent this past weekend fretting again as Leo went to camp and the rest of the family went to Pinnacles National Monument. Which was glorious. As was Leo's own, separate vacation.

Friday, February 17, 2012

Autism Works: A Bottle of Sunshine

Scott Standifer
Autism Works National Conference

We are in the dregs of winter where I live, and I’ve got the blahs. Everything is cold and grey, the branches are bare, the patches of snow are dirty, and spring seems like it will never get here. Our family’s latest antidote has been listening to a song on one of my son’s old toddler CDs--Bottle of Sunshine by Milkshake. It is a peppy song about a child who finds ways to be unstoppably proactive and creative to entertain herself on days when there is “nothing to do.” (Of course, you can’t really put sunshine in a bottle--that is a metaphor for something fun or cheerful that helps you feel good.)

That’s a good metaphor for our upcoming Autism Works National Conference -- an antidote for the blahs.

There are a lot of people discouraged over the prospects for autism employment right now, and with good reason. Most of the state vocational rehabilitation (voc rehab) offices--which are supposed to help people with disabilities find jobs--don’t seem to understand autism very well. The parent advocates and special ed folks who are trying to make their own solutions are often struggling to understand job development and workplace needs. The large autism advocacy groups haven’t been doing much. Employers don’t seem to understand the potential of adults on the spectrum. Autism employment rates are abysmal. National experts spout gloom about the future implications.

Compared to that, Autism Works is a big bottle of sunshine.

Our opening keynote speaker is Deb Russell, Manager of Outreach and Employee Services for Walgreens and president of the U.S. Business Leadership Network. She will talk about how Walgreens expects to roll out its innovative autism employment program to ALL Walgreens retails stores nationwide. Andy Traub of AMC Theatres will present later that day, talking about how AMC Theatres is doing the same thing with all of their local theatres. Both presenters say lots of other corporations are visiting them to learn about implementing such programs themselves.
Nationally-known autism consultant James Emmett will present on exciting developments in corporate diversity initiatives and autism. The federal government is pressuring businesses to hire more people with disabilities, and corporations are starting to notice the opportunities offered by the autism community. Big plans are afoot, and James is in the middle of them.

Our second-day keynote speaker is self-advocate and author Dr. Stephen Shore, who will talk about lessons we can learn from the employment successes of prominent people on the spectrum. Brian King, another autism self-advocate and a licensed Clinical Social Worker, will present on social networking skills in the workplace. Ari Ne’eman, who is a noted autism political activist and founder of the Autistic Self Advocacy Network (ASAN), will present on overcoming barriers of social architecture. ASAN, is one of the first self-advocacy groups to begin addressing autism employment directly. In September, 2011, ASAN announced a collaboration with mortgage investment company Freddie Mac to provide several internships for adults on the spectrum in the Washington, D.C. area.

Autism employment specialist Katina Demetriou will discuss POW&R -- the innovative, productive collaboration between Delaware Voc Rehab and Autism Delaware on transition services for autism. That program was identified in the fall of 2010 as one of the exemplary autism employment service providers in the country.

Missouri Voc Rehab Autism Coordinator Karla Bunch will describe her agency's emerging new model for services to clients with autism. This model is based on input from a regional stakeholders working group and is the first of its kind in the country. Karla's team is also working in conjunction with local disability employment service providers on creating new, autism-friendly assessment and employment service models. We expect to see big contingents attending from other interested voc rehab agencies, such as those of Minnesota and Oklahoma.

There are also exciting things on the IT front. You may have heard about Aspiritech, the Chicago company that is hiring folks with Asperger’s to do software testing. Aspiritech was inspired by a Danish company called Specialisterne, which has also inspired a few other groups, including Passwerk in Belgium and Autism Works UK. We will have them all on a “vitual panel” via Skype. We will move the conversation beyond “Isn’t this cool?” to “What lessons are emerging? What works and doesn’t work?”

Disability self-advocate Kathy Moeller will be demoing her “cognitive prosthetic” software My Bionic Brain™ . This new iPad application is tailored for people with "cognitive inconveniences" (as Kathy calls them) like autism, including strategies for dividing and alternating attention, remaining oriented in time and space, cognitive flexibility, communication, emotional control and executive function. It is an extension of the successful BrainBook®--a print-based tool that Kathy developed and marketed after she acquired a significant Traumatic Brain Injury (TBI) following a car accident in 1990. (Kathy and I recently compared notes on support needs for adult with TBI and with autism, and we were amazed at the similarities.)

Other session topics include:
  • The Emerging Autism Toolkit in the Post-Secondary Ed World (a review of the strategies colleges and universities are using to support the autism community)
  • The Methodological Toolbox for Workplace Supports
  • How to Do Social Coaching
  • Customized Self-Employment for People with Autism
The folks from TIAA-CREF's innovative Fruits of Employment project will be back this year to participate in our Panel of Employers session, joining staff from Roses for Autism (some of their great bouquets will be on display!), Walgreens, and AMC Theatres to talk about the business implications of autism employment. We will also have a Panel of Working Youth to offer insights from the worker side of the employment equation.

You can more read about all the sessions in the (updated to fix link) Autism Works National Conference agenda.

As I think about all of this, it is still grey and gloomy outside my office window. Last year at about this time I remember the weather giving me this same dragging feeling.

Then I went to the Autism Works conference. It was so energizing! People were there from 25 states, including staff from multiple voc rehab and state DD agencies, parents advocates, self-advocates, academics, and business people. Everywhere you turned, people were sharing ideas and stories, and proposing collaborations. There was no question about whether people with autism could or should work--it was just a matter of “rolling up our sleeves” and figuring out how to make it happen. Everyone was ready to pitch in and help.

It was like a big bottle of sunshine.

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The Autism Works National Conference will be held March 6 & 7, 2012, in St. Louis Missouri. Details are available on the conference Facebook page or at http://dps.missouri.edu/Autism/AutismConf.html. You can register for the conference here.

Wednesday, February 15, 2012

What Can Technology Do For You?

Jen Lee Reeves
www.bornjustright.com

Jen Lee Reeves is one of those people who always has a big smile and a big goal. She teaches social media and engagement at the Missouri School of Journalism and is the interactive director at KOMU 8 TV, the only university-owned commercial television station in the United States. She has built a great community on her website Born Just Right, and has plans to present on a panel at SXSW (South by Southwest) a series of conferences held in Austin that brings multimedia professionals together. She's hoping our community can offer additional perspectives.

What inspired you to get involved in the special needs community?

My daughter was born in December of 2005 with a limb difference. She has a typical right arm and a left arm that stops right after the humerus and growth plate. I immediately felt the need to connect with other families of limb differences to learn about this world ... which I had not even known existed until the day she was born. My desire to find community led to a website that has introduced me to so many different people inside the special needs world. I have learned by experience that most people who are touched by special needs have similar experiences. We can all lean on each other and learn from each other.

How did you end up on a panel at SXSW and what can the people at SXSW offer?

I am a journalist by trade and found a calling to attend the SXSW conference for the last number of years. I've learned there is an incredibly diverse group of people who believe in using technology to build community and connections. There are so many different motivations, but similar goals. I proposed a panel discussion about the special needs community because I realized I should continue to find ways to blend my two priorities: community building and special needs. I've found at SXSW, there are so many smart people, you end up coming up with amazing ideas. If we can target new ways to bring special needs families together, the tech world might be able to help take those ideas and make them into reality.

Is this just about physical disability?

This panel is focused on all special needs communities. The more I talk to families with special needs and adults with special needs, the more I realize we each deal with many of the same emotional and logistical challenges. I learned so many concepts on how to work with my school and therapists from families of children with a wide range of differences. Adults bring additional perspective on technology uses and with them we can brainstorm on new ideas. I'd really love as many different perspectives as possible. It will make this panel that much better!

What kind of things are you looking for from the TPGA community?

I'm looking for anyone to share video of the ways technology currently helps in their lives, and share ideas on ways technology could be improved. The autism community has already found incredible ways to blend technology into therapies and communication. I'd love to see the many ways the tech world is making a difference and what things you wish existed today -- those ideas might be able to come true!

What will happen after SXSW? What are the next steps?

After SXSW, I hope to report back to all of the communities that shared their ideas, then see if there are projects and funding to build or experiment. I'm really hoping some people who are passionate about improving the special needs world will consider donating time to test out ideas we come up with during the panel.

How can someone get more involved?

I'd love to see anyone and everyone share videos. I have posted an introduction to the project: http://bit.ly/SXsnVID - If you aren't comfortable with video, please share your thoughts and ideas on my post about this project: http://bit.ly/SXsnPreview

Will you be having a meetup at SXSW?

We are hoping to have an unofficial meetup near the Omni Hotel after the panel discussion. If you plan to be there, we'll discuss it at the end of our session. I'll also tweet out details when I have them using the #SXsn (South by special needs) hashtag on Twitter and Google+.

Here's a link to the panel page: http://schedule.sxsw.com/2012/events/event_IAP11932

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Registration is still open for SXSW for anyone who is interested in attending. Interactive: March 9–13, Film: March 9–17, Music: March 13–18

Monday, February 13, 2012

Kate Winslet's Autism Awareness Project: The Golden Hat

Carol Greenburg, Shannon Des Roches Rosa, and Jennifer Byde Myers
www.ThinkingAutismGuide.com

Thinking Person's Guide to Autism editors Carol, Shannon, and Jennifer recently attended an event celebrating the work of Kate Winslet. Kate has a new autism awareness and fundraising book coming out next month called The Golden Hat: Talking Back to Autism. We were told the book is meant to shine "a light on a world very few people understand [...] about people with profound autism and the challenges they and their families face every day, as well as all the 'beautiful potential' of people with autism."

The event was hosted by Ladies' Home Journal, and featured Margret Ericsdottir, whose son Keli is the inspiration for The Golden Hat Foundation. (Kate is currently on the cover of LHJ, talking about how she was inspired to create The Golden Hat book and foundation with Margret; Margret is the foundation's President and CEO.)

The Golden hat book (which Kate fought "tooth and nail" to get made) features photos of Kate's celebrity friends Tom Hanks, Meryl Streep, Kobe Bryant, Conan O'Brien, and many others wearing Kate's old Trilby Hat, and saying something about who they are, what is important to them. Some of these statements are poignant: Reese Witherspoon said "Love one another." Some are amusing: George Clooney said, "I'm sorry about Batman and Robin." The celebrities are featured alongside non-speaking people with autism, who offer their own statements, like Keli's "I am real."

The book also describes the inspiration and journey of The Golden Hat. Kate and Margret met when when Kate did the voiceover for Iceland native Margret's autism documentary A Mother's Courage (which at the event Margret noted she title The Sunshine Boy, but HBO retitled). Kate and Margret became friends and joined forces, and now have two goals the Golden Hat Foundation is trying to make real:
  • Short term: Improve awareness of the capabilities of people living with autism.
  • Long term: Provide assisted living campuses where those with severe autism can receive education direction and job training in an environment that supports their individual strengths.
At the event, we were told "the Golden Hat Foundation doesn't just raise awareness about autism, but it's proof of what happens when determined moms band together to create change." Margret  talked about the terrible feeling she used to have, of not being able to help her own child; and how important it is for people to understand that non-speaking Autistic people can be capable, can contribute to society.

A final goal: Kate and Margret want to get The Golden Hat book into the hands of every educator in America, so those educators can understand how capable students with autism are.

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Shannon and Jennifer joined the event via conference call and were not able to view the Golden Hat team's autism videos, but Carol was at the event in person and had constructive criticism on the videos and the project in general. We hope Carol's insights can help shape and fine-tune The Golden Hat Foundation's vision and goals.

Carol: From what I was able to process, the videos were definitely a notch above the typical "helpless kids trapped inside the prison that is autism." Everyone looked happy, no meltdown shots, autism-as-kidnapper metaphors, or parental suicide/homicide nightmares. There was a serious attempt at a balance between autistics and parents expressing themselves, all in a pretty calm positive way, all of which I like. The Golden Hat Foundation focuses on empowering non-speaking autistics and their families, which allowed their videos to present a refreshing change from the usual interview montage of one token non-speaking adult literally outspoken by autistic chatty Kathies like me.

What was missing and would have like to have seen were a few substantive comments by older non-speaking kids about their specific goals and how they think The Golden Hat could help them achieve those goals. Common problem, in my opinion, with parent-produced videos. It's no longer enough, at least for me, to show that autistics are people too and some of us are even pretty happy people. Like I said during the comment period at the event, independence, and contentment are nice, but they're not enough -- what I want for my son is indispensability. I think Golden Hat needs to set bar higher by demonstrating what autistics, whether they use spoken language or not, contribute to the world because of, not despite our autism.

We were told the mission of the Golden Hat Foundation is "the establishment of innovative campuses that offer people with autism the opportunity to learn to communicate effectively, receive an education, job training and enjoy recreational activities, all within a supportive social network."

The campuses were described to us as having three levels of care: 24 hour care; assisted living so folks can have their own apartment but with accomodations like wearable sensors that turn the stove off when they go through the front door; and totally independent. We were also told "There's a thought that if parents wanted to, they could build a home and live with their children there. Why an isolated campus instead of integrating out? Because it's too hard to change people's attitudes in such a short time -- it'll be easier to bring people in, e.g., let the people who work there live onsite. Start showing what people with autism are like, what an inclusive campus can be like."

Carol: The community housing campus plan is pretty. Sounds like they'd be open to input from universal design experts, and I'd like to think some of those folks would be autistic. I have no problem with intentional communities. I can see why their model would appeal to many autistic people and their families, so they'd be able to pull in residents, and I certainly admire the commitment to inclusion. My question is, if they're trying to lure non-autistic people into an autistic community, rather than integrate autistic people into a primarily non-autistic community, then how exactly do they propose to bring in neurotypical (NT) people on a large and consistent scale? As all family members know, it can be a challenge to spend a lot of time around autistic folks, and unless NTs have a vested interest in an autistic individual, I'd think they would need a heck of an incentive to live on, work on, or even consistently visit such a campus. Not sure exactly what that incentive would look like.

From the Golden Hat Foundation website: People with autism carry a double burden. In addition to their daily speech and sensory challenges, they must also cope with negative attitudes of society, inadequate support for their needs and, in some cases, outright discrimination. Sadly, people with autism are often labeled “cognitively impaired.” Because communication skills are an integral part of how most professionals determine a person's intelligence, their communication impairments can severely affect their ability to perform on standardized intelligence tests.

Carol: I think Golden Hat has to be a little more careful with their phrasing in their laudable intent to make the point that autism does not necessarily equal intellectual disability. My kid and Margret's kid, don't have intellectual disabilities, but some autistic people do. There is a subtle, but significant difference between saying autism and intellectual disabilities are not inherently related and saying they are by definition not related. I very much doubt Golden Hat wants to say that only autistics like me or my child have something to contribute, but that was how their message came across.

Friday, February 10, 2012

The DSM-V Changes From a Late-Diagnosed Adult's Perspective

Charli Devnet

Charli writes: In view of the firestorm surrounding the proposed changes to the DSM-V criteria for the diagnosis of autism spectrum disorder, an open debate on the nature and scope of autism and what it means to be autistic might be in order.

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I’m not an expert, but I am autistic. All my life I searched for the answer to a seemingly inexplicable riddle, “Just what is wrong with me?”

At the age of 54, I was diagnosed with Asperger syndrome. The diagnosis, when I finally acquired one, was not a surprise, not to me nor to anyone who had known me for any significant time. I’m far from a borderline case. No one came up to me and said, “You? We just cannot believe it!” Instead, a number of people greeted my disclosure with the response, “We thought so all along.”

Not content to simply have found the key to unraveling the mysteries of my past, I became somewhat obsessive, as Aspies are prone to do, and raided the local libraries and bookstores for literature on autism and the autism spectrum, and I searched the internet for hours on end for all the knowledge I could absorb. Ironically, the more information I acquired, the more confused I became.

I thought I knew what autism was. Eugen Bleiler, a Swiss psychiatrist treating childhood schizophrenics, coined the term a century ago to refer to the tendency of his patients to withdraw from the world. “Autism” is derived from the Greek word meaning “self,” and therefore, it seemed to me, autism meant “self alone,” and denoted a person who lived in a universe of one. That made sense to me, because, most of my life, I had indeed been stranded in a world apart.

Perhaps I should have figured it out a long time ago. I had had no delays in verbal skills. That may be what threw me off. From the age of two, I was highly articulate and talked what my mother used to call “a blue streak” about my favorite subjects. I talked a bit funny, it is true, muttered and mumbled without proper enunciation, and tended to babble on even when no one was listening -- but I sure had a wide vocabulary. In all other areas of life, however, I was, and remain, profoundly autistic.

Even as a bright, bouncy tomboy in the 1960s, I had been called a misfit. I had not been considered disabled, but rather as a gifted child with behavioral problems. My teachers treated me rather harshly, believing that such an intellectually advanced child -- and a girl, at that -- should have known better than to throw tantrums and cause disruptions in class. Other kids mocked me for my poor motor skill coordination, my strange food aversions, and because, as I said, I did talk a little funny. Schoolyard bullies targeted me, for reasons that I could never quite grasp. Nevertheless, I did pretty well, all in all. I did have friends of my own. My grades in school were high even though class work often bored me. I pursued my special interests and, if my schoolmates harassed me, I could take comfort in a network of supportive aunts, uncles, and grandparents. Like most kids in the sixties, I was accorded a measure of freedom that is unknown to the children of today. When the bullies tormented me, I hopped on my bike and sped away. Eventually I learned to fight back.

Then it all changed. My parents sold our house in my hometown and moved up north, to a land where it was always winter, and the winter seeped into my soul. As a bitterly lonely teenager, I withdrew into an inner life of fantasy and imagination. As Tony Attwood has stated, this is a defensive mechanism resorted to by many aspiegirls to cope with an intolerable reality. As an adult, I tried my best to rejoin the world, but found that it was not so easy. Wherever I went, I was a stranger. I could not fit in no matter earnestly I tried. I was not just socially awkward; I was socially dysfunctional, a deficit which a high IQ and several college degrees could not offset. It appeared that I was permanently fated to be the outsider looking in like a child with her nose frozen against the windowpane or rapping upon a door which would never open. Yes, I could see that the term “autism” applied to me.

Yet, as I delved further into my research, I realized that the modern understanding of “autism” did not necessarily refer to a world on one’s self, but was more commonly used to describe a panoply of behaviors associated with autistic persons, such as sensory processing difficulties, repetitive motions, difficulties in social interaction, resistance to change, insistence upon routine, poor motor skills, deep but narrow interests and so forth.

By their fruits, you will know them. I suppose so, but the focus has shifted to all fruit and no tree. Because all attention was now concentrated on the outward manifestations of autism, the original meaning of the term had been forgotten. People self-identified as autistic, and, indeed, were professionally diagnosed with ASD that were not, in any sense, living in a universe of one. In fact, many of these persons now seen as on the spectrum would meet my criteria for “perfectly normal;” they have successful careers, loving marriages, families of their own, and a place in the community. As our understanding of the autism spectrum has evolved to include individuals who are far removed from the classical definition of autism, the inevitable backlash has arisen. Hence, there are suggestions of over-diagnosis, and the DSM-V Committee has proposed to redefine the guidelines for ASD in an apparently more restrictive manner.

Lost in the furor that has erupted and the allegations and recriminations flying back and forth, are the key questions that should be agreed upon before any revisions are made: Just what does it mean to be autistic? What are the limits to the autism spectrum? What essentially differentiates autistic persons from those who are not autistic? Is it merely a matter of behavior -- and if it is, autism can indeed be “cured,” for behaviors can change, or is there something inborn in autistic persons which is not present with neurotypicals and will persist even if their behaviors are modified?

I have not yet taken a position on the proposed changes to the DSM-V because I am still uncertain what the impact of the new criteria will be, or whether the benefits wrought by the changes will outweigh the detriments. Some have surmised that, under the new DSM-V, adults on the autistic spectrum who have grown up undiagnosed will not be able to obtain an ASD diagnosis later in life, as I did. If that is the case, the changes will do a great deal of harm. The relief and empowerment I felt when I was diagnosed and finally discovered what “was wrong with me” were overwhelming. The diagnosis came at a very low point in my life, soon after my parents and other family members had passed away, and I was immobilized by grief, depression, loneliness, and anxiety. It literally gave me a second life.

The diagnosis of Asperger syndrome also freed me from the burden of shame that I had carried on my shoulders for decades. When I was a child my mother had boasted to all her in-laws of my high intelligence and how I was so much superior to all my excruciatingly mediocre cousins. However, as the years unfolded, all the boring typical cousins went on to have respectable careers, marriages, homes, and families of their own while this little savant fell flat on her face. My early promise was forgotten and now when people looked at me they saw only my social ineptitude, strange behavior, inability to function as a mature independent adult and -- despite a lot of education -- my failure to eke out more than a subsistence living from a patchwork quilt of part-time jobs. Like many Aspies of my generation, I was blamed for my own miscues and seen as a lazy, slovenly, no-good bum and a bitter disappointment to those who had once believed in me. Diagnosis brought me the realization that it really was not “all my fault “as I had been led to believe, and enabled me to stop apologizing and regain a measure of pride. I would not want to sign onto anything which might deprive other autistic adults of the same gift of self-discovery that I was finally granted.

On the other hand, I find it perfectly logical to suppose that there is a measure of overdiagnosis going on, especially at the childhood level. I have worked in law offices where we represented Workers’ Compensation and Social Security Disability claimants. I am aware that many sympathetic physicians will exaggerate their patients’ impairments so that the applicant might qualify more easily for benefits. By the same token, it would not surprise me if schools were assessing borderline children as autistic so that they might receive services that they would otherwise not be entitled to. Something more sinister might be going on as well. Just as the makers of diet products have grown rich convincing virtually all of us that we need to lose weight, an industry has grown up around the “autism epidemic” which has a vested interested in keeping the numbers high. Imagine, if you will, that you held a high-paid position as a fundraiser for a non-profit dedicated to autism research. You would be more secure in your job if you could loudly trumpet to frightened parents and grandparents that one out of every ninety children will be diagnosed as autistic. One out of every 900? Not so secure. And if that number was understood to include not only sweet adorable tots, but fat balding fifty-year-olds? Not a chance.

I do not find the argument made by many on our side that access to programs and services might be restricted under the new criteria all that compelling. The allocation of resources is a political and economic argument, not scientific one. I am mystified by those who appear to believe that, the more expansive the autism spectrum is, the more people will have access to services. The opposite might well occur and access decrease for those on the more challenged end of the spectrum. We are not dealing with an infinite steam of resources, and the parents of non-speaking intensely autistic kids well resent their children having to share what services and programs are available with high functioning Aspies like me. If you have sought government assistance recently, either for yourself or for a charity, you know how difficult obtaining such help has become. Our government may spend untold sums on the newest weapons systems, on invading Middle Eastern countries, in baling out Wall Street, but for the poor, the disabled, the unemployed, the uninsured the pie is shrinking quickly. Before we increase the demand, we should be sure that the demand will be answered.

What bothers me most of all is this: the term “autism” is in danger of becoming so amorphous that it will lose all significance. Temple Grandin, the great autistic scientist, writes in her book “As I See It” about three types of autistic minds: the visual thinkers like herself, who can take things apart and put things together; pattern thinkers who are good at math and music; and verbal thinkers such as myself whose skill lies with words.

As a verbal thinker, I want words to mean something. Indeed, I do not feel safe around words that have no definite or discernible meaning. When I hear label “autistic” thrown around to denote various and sundry disorders, I cringe. The autism spectrum may well be wide and varied, but it should nevertheless have a distinct beginning and an end. Autism is not something that can be seen through a microscope or revealed in a sonogram, at least, not yet. Nevertheless, the diagnostic criteria cannot be totally subjective. I understand the motivations which lead well-intentioned persons in the community to say, “The more the merrier” and let us define the spectrum as broadly as possible, but that sentiment neither gives me comfort nor helps me to understand what it means to be autistic.

I have always known that in some fundamental way I am different from other people, and that this difference was not shared by many, but by very few. Not everyone has a “touch of autism.” If that were indeed the case, then the diagnosis would have no significance, and I might as well reclaim my childhood label of “misfit.” At least people were in agreement as to what that word meant.

Wednesday, February 8, 2012

Squag: A Social Media Space for ASD Tweens & Teens

Sara Winter
Squag.com

Squag is a new social media space with a difference, developed for tweens and younger teens with autism.  The user (the tween, called a Squagger) begins using Squag by interacting with his or her own "Squagspace'" -- designed to look like a room -- with content (photos, videos, and messages added by parents.  Eventually, when a particular Squagger is is ready (according to parents) one Squagger is matched with another, and they can interact.  The interaction are always only between two Squaggers.   The platform is now in beta user testing, which means the ability to connect pairs of  Squaggers is not yet enabled.


I saw a Squag announcement, and was intrigued by the concept, so arranged an interview with Sara Winter, Squag's founder--LD

What inspired you to create SquagTM?

The idea came to me two years ago when I was on the playground with my nephew at recess. He has ASD and I’ve been his aide both at home and at school since his diagnosis in 2001.

There had been a skirmish, and he was very upset. When the other kids went inside, I encouraged him to type a note to his parents on my blackberry to tell them what he was feeling. I was completely astounded by the level of sophistication he was showing by in expressing himself in this way. I realized in that moment that I had been underestimating him, and if I was underestimating him, who else in his immediate community was and what opportunities was he missing out on a result?

I figured there should be software for kids like “Sam” – something that wasn’t therapy and wasn’t gaming, but somewhere in between; something that took his communication style and sensory processing into consideration and made it safe for him to communicate not only with parents and peers, but with himself!

I spoke to my family and in a leap of faith (a big one) we decided to build it ourselves.

What input did you have? Specifically, from kids on the spectrum and adults on the spectrum?  How about from professionals and other parents?

In the very beginning, we based it on four kids we had known since they were first diagnosed (one of them being my nephew) that represented different ends of the spectrum. Each step of the way, we engaged more people from both the child/parent and professional community for their feedback.

Once we had a prototype, we were able to test it with 65 families and really get a sense of what was working and what was not.  We were able to present it to the Autism Research Unit at Sick Kids Hospital (http://www.sickkids.ca/) here in Toronto and get their feedback too.

One of the best things we ever did was to use Aspiritech (www.aspiritech.org)  - a beta testing company out of Chicago that employs adults on the spectrum. Their input was invaluable to us – not only were they fantastic in terms of functionality but it opened up great conversations for us conceptually as well.

The purpose of this open beta test (and the reason we have not enabled it for peer-to-peer capabilities yet) is to engage everyone in our community, adults, kids, parents, caregivers, psychologists and educators to test the SquagpadTM – the foundation of the experience -  and give us the feedback we need to release the next version.

Tell me a little bit about the beta-testing process.

It’s ongoing and has been amazing. Having the SquagpadsTM in the homes of our users is incredible. Hearing from our parent testers that their kids are journaling about their experiences, looking in the mirror and building ideas about themselves and sharing them with their parents energizes us to keep going.

Our community is very clear on what still needs to be done and we have received overwhelming support to do whatever it takes to get it done properly.

What about the Squag experience for kids who aren't yet independently reading and writing?

(I made an error in writing up this response. What follows is correct.--LD) We have video capabilities in the Squagpads now but do not have audio augmentation.  We absolutely will be adding all kinds of things to support different users

Is SquagTM available for mobile devices like the iPad?
You can access all of your parent information on an iPad but the air application itself has to be downloaded to desktop or laptop.

Reconfiguring for an iPad is definitely something we will do, and won't be too far in the future. We wanted to start with this version and have it available to everyone first, and build out a mobile app as soon as we get a feel for how both our parent and child users are experiencing the SquagpadTM.

What did you learn?
I was not at all a tech person before I started this and created the parent dashboard in the way that would be accessible to me. I’ve been totally humbled and educated on what it takes to build technology.

It was also a crazy experience to go out into the special needs social media community and find families who have been through what my sister has been through in the ten years since my nephew’s diagnosis. Being so focused on my nephew’s needs for so long, it was incredible to find other kids that had the same strengths, stims, struggles and behaviors as he did. It was very empowering for our family. I’ve been really inspired by what other people have built In our community – whether it be blogs, apps, products or services that bring awareness and support this spectacular group of young people.

The other part of this is as we’ve been building SquagTM, my oldest son has his own issues. His diagnosis is different but many of his challenges cross over, and it occurred to us that there are many group of kids (and parents) that would enjoy and benefit from SquagTM. That’s why we’re committed to offering the SquagpadTM with labels or without  - whatever parents choose will be expressed in their child’s pad.

I feel like we’re part of a movement that’s been created by the generation of kids that has been empowered by the connectivity of social media - none of us will ever be the same after knowing and loving these spectacular kids. And a lot of incredible voices , innovation and creativity have come out of it.

What  about online  safety issues?

It's the biggest issue.

Let me be really clear that the SquagpadTM itself is a totally private space for parent and child. Parents hold all the username and password information and communicate with their kids through a space that has been curated by us and finessed by the parents to reflect their child’s personal interests. Some families will only ever want to use the SquagpadTM, and not enable peer-to-peer capabilities so we will be adding new features constantly to keep it dynamic and interesting. These features will always be geared toward self-reflection and creative expression to help encode the child’s confidence.

Once we enable the SquagpadsTM for the peer-to-peer capabilities we will be working very closely with ASD organizations to lock down membership and ensure that everyone is safe. If members want a peer-to-peer enabled SquagpadTM they will be taken through a thorough application process to be considered. We will also require their credit card and there will be a small monthly fee. Our staff will be moderating all of the activities and as well, parents will have transcripts from every squag session – they will be able to see who their child is squagging with and when, for how long, and exactly what is said from the reporting section of the parent dashboard. No images of the child will be shared, nor will any of the communication between parent and child. ‘Squagging’ is always one on one, and only the text content that the child has added, the stock images and videos that they have selected, are available to spark conversation.

That’s why the testing period is imperative. We will not move to the next step until we are 100% sure we can do it safely and securely. The organizations and schools we partner with are critical to ensuring that.


What else would you like our readers to know?

I think these kids are almost always underestimated; and most definitely underserviced. Everyone wants to be connected to the people they care about. That is the nugget of social media I love the most. But the constant drive for acquisition and sharing on other networks represents a missed opportunity to me – why bother “friending” someone if you haven’t taken the time to figure out who you are first? There are a lot of great things about gaming and social networking, but that’s not what we’re out to do with SquagTM. We are committed to offering a space where kids can be mindful with technology and encode some real confidence to take back into their daily lives.

Monday, February 6, 2012

Interview: Autism Parenting Is Not a Tragic Battle

Marj Hatzell
thedgoddess.com

A recent conversation with Marj about rejecting autism and autism parenting as a "tragic battle" evolved into this interview. If you don't know Marj already, she is a proud SAHM two two boys with autism, ADHD, OCD and a variety of other acronyms. Eleven-year-old Luke is obsessed with all things Star Wars, the Titanic, catastrophic weather events and electronics. Ian is nine, nonverbal and was a fish in a former life. Marj lives vicariously through her computer, is the Queen of Procrastination and goes to Eleven.

Tell us a little bit about yourself and your kids.

I am 39, a SAHM of two boys and have a degree in special educations, even doing my student teaching in a school for autism. When my boys were born I decided to stay home for a few years because I knew the time was short.

I saw signs early on in infancy that raised red flags. Luke is eleven, diagnosed with PDD-NOS, ADHD, OCD and a variety of other acronyms. Ian is nine, nonverbal and has an autism diagnosis, as well as ADHD, MR and a seizure disorder. Both boys have piles of medical issues, significant food allergies and are always on the go, go, GO. They also have sleep disorders. Basically, our lives are never boring.

What is a typical day like? Do you have typical days?

Typical day? HAHA. A typical day for us is all about maintaining a Schedule, heading off meltdowns, and making it to the end of the day. We are always in survival mode. I get the boys off to school, run errands, attempt to put the house in order and catch up on any sleep I missed -- since a typical night has me awake several times with Ian, sometimes with Luke. Some nights Ian will sleep two or three hours, some nights eleven. When they arrive home from school in the afternoon we are outside trying to expend as much energy as possible. It's all about sensory. Ian often takes several showers a day. On weekends we have therapy, playmates a.k.a. structured therapy play, and we also hit the indoor pool. We try to keep as busy as possible, downtime is our nemesis. Although in the evenings after dinner we like to snuggle, play games, do crosswords together, etc.

Has your approach to autism parenting changed over time?

I would say so. I used to think I could just take "typical" parenting and adapt that to what we needed. Often times that has worked. But what I realized is that autism parenting, while still parenting, does take a little more flexibility, imagination and problem solving. I used to think everything was a big deal, now I realize you have to pick your battles, so to speak. I have learned to try to not be a therapist and just focus on being a Parent. It was hard to understand that my kids needed downtime and didn't need to be doing therapy 24/7. They need time to be kids! I had to show them some things so they could be a kid, though. Now if I try to do too much I get "talk to the hand" or "UH UH" complete with emphatic head shaking. Ha ha!

What do you want people to know about your approach to autism parenting?

Parenting is parenting. And while we do need to do a few things differently, we also need to learn to relax more than other parents. We have to stop thinking that we need to change every little behavior. Sure, it takes them longer to learn some things but sometimes they are just being kids. I have learned to take things in stride and not to sweat the small stuff.  I have learned to celebrate every little milestone, every step, and be appreciative for every day with them. Is every day easy? Heck no. We have some pretty significant issues to deal with. We are still working on toilet training and sometimes it is, um, totally gross in our house. We have holes in the walls. Broken furniture. Most people say, "I don't know how you do it" but honestly, it's no big thing. I am a parent. Sure it's hard sometimes, but isn't parenting in general?

Are you ever taken aback by other folks' assumptions about autism parenting?

Yes. I get so many apologies, pity, negativity. It hurts me, honestly. I know this is a hard life, but my kids aren't dying of an awful disease. Sure, they have challenges but we don't need people to feel sorry for us. We also don't need people to think we spoil them, allow them to behave a certain way. Most importantly, we do not allow excuses and we don't use autism as an excuse for their behavior. Sure, once or twice I have explained to someone who was highly disgusted or annoyed with my kid that they are working on learning a specific skill and they are autistic, meaning we need some patience and practice. I remove them from situations if necessary.

For some reason, the only thing we see in the media, online, on websites, in newspapers is sad, negative examples of autism. How hard it is. How sad the parents are or how awful it is for their family.

Look, I am the first person to admit we have challenges and obstacles. But I also believe parents sometimes need to adjust their own perceptions and viewpoints. Our children feed off do them. I know sometimes self-injury is tough to deal with. But I don't let that rule our lives. I parent, just like other parents. We have a family life, just like other families. Adjusting your thinking brings you hope. Helps you to realize that no one's life is The Cleavers. We all have our burdens. We all have challenges in our lives. Your life is what you make of it. You can accept what you have, move on and focus on helping your children reach their potential or you can be sad, cold inside and not enjoy your life. For me, it was a very easy decision.

Do negative media stories about autism and autism parenting ever affect you or your mood?

Yes! Because I think it perpetuates stereotypes! Sure, my life is difficult. I don't get out as much with my friends, my non-autism friends don't always understand why I can't go out at the drop of a hat or I can't go to a certain restaurant with my child and have to find a sitter. But I want people to realize that every child with autism is different. They all have unique gifts. They all are intrinsically beautiful and worthy of love and respect. They are children, first and foremost.

Due to media negativity people tend to make assumptions about our life. And it couldn't be further from the truth. Again, everyone's experience is different. We are all at different stages of mourning and acceptance. But you must move on at some point in your life; your kid needs you. They need you to focus.  You are totally missing the big picture if you haven't accepted them for who they are and are still hoping against hope for something that will never happen. 

My focus?  Plan for the Worst, hope for the best. Also? Humor helps. I tend to be sarcastic and joke a lot. I choose joy. :)

What do you want people to know about your kids?

My kids are amazing. And they will do amazing things. They aren't spoiled, they aren't freaks, they aren't contagious. They don't need pity. They are also not faking it. I have actually had people accuse me of having my mindset because my kids weren't autistic enough, like there is some type of hardship Olympics. Thats when I tell them about the poo, the holes in the wall, the lack of sleep, the ruined furniture and floors. Believe me, we have plenty to deal with. We just choose to focus in other areas. I have been accused of being abusive towards them for vaxxing, or not trying certain interventions. It's unreal. I am just trying to parent, to the best of my ability, jut like everyone else.

Do you have role models, or can you tell us who has helped you shape your approach to autism in general?

I follow blogs of autistic adults and read everything I can get my hands on. The one thing I notice from some of the more prominent autistic adults is that many of them had parents who placed no limitations on them and wanted them to succeed to the best of their ability. I want that for my boys. I also want to respect them and see where they are coming from. This is crucial to other parents, too. They need to see it from both sides.

I am lucky to have a very large and close family. They are such an amazing support group for us.  I have also been fortunate to have other parents locally that have been through all of this, navigating the system long before me. Forging the path, so to speak.

My father was my biggest cheerleader. He accepted our children from day one, always focused on the positives, always treated them like "normal" kids. I think he would be my role model. One thing I have learned from my family is to be accepting of everyone.

Lastly, the online support world has been amazing, though I have found my share of negativity. In cyber space, I have also found amazing websites, blogs, parents, information. You know, that whole "takes a village"thing? Strength in numbers? We are all in this together. Other parents are an important resource.

Friday, February 3, 2012

Undeniably Autism: The NY Times and Asperger's Diagnoses

Sarah MacLeod
quarksandquirks.wordpress.com

The New York Times recently printed two op-eds questioning the existence of Asperger syndrome. The articles came soon after a flurry of media coverage about upcoming proposed changes to the DSM-V, the newest version of psychiatry's diagnostic guide. These changes remove Asperger syndrome and PDD-NOS (pervasive developmental disorder -- not otherwise specified) from the manual, instead creating one category for Autism Spectrum Disorder.

Concerns abound. Will people previously fitting one of the three categories now fall into a diagnostic limbo? Will folks lose services because they don't fit the definition? At least one study claims that these new criteria may greatly reduced the number of people diagnosed as on the autistic spectrum, although only time will tell.

Two op-ed contributors to the New York Times seem to have the answer to this possible upcoming crisis: deny that Asperger's exists and insist the only autism is the classic, nonverbal sort. Benjamin Nugent, a thirty-something creative writer, was diagnosed by his mother (a psychology professor) and her colleague when in his late teens. He states this was a case of misdiagnosis -- that he was merely a socially late bloomer of sorts who buried himself in music and books as a teen, with all the behavior identified as Asperger's vanishing in his early twenties. He uses his writing career as further proof of his neurotypical status:
Last year I sold a novel of the psychological-realism variety, which means that my job became to intuit the unverbalized meanings of social interactions and create fictional social encounters with interesting secret subtexts. By contrast, people with Asperger syndrome and other autism spectrum disorders usually struggle to pick up nonverbal social cues. They often prefer the kind of thinking involved in chess and math, activities at which I am almost as inept as I am at soccer (Nugent).
Where do I begin? Nugent may well be correct in his stance that he never had Asperger's. Misdiagnosis happens in psychiatry and medicine, and it can be a tragedy. When one is quite close to a subject, which his mother certainly was -- given it was her specialty -- one may see more than is really there. Psychiatric diagnosis requires professional distance. A parent's observations and gut are important, but the final word on a serious diagnosis, medical or psychological, needs to be done by someone outside of the situation.

His novel, however, and the rest of his writing life, are not proof that he isn't. Chess and math are stereotypical Asperger's/Autistic pursuits perhaps, but many a person on the spectrum gravitates to other areas of interest. Yes, nonverbal signals and paralanguage are a challenge to those on the spectrum. They may be learned by memorization and subsequent application, the latter taking a good deal of mental energy and persistence. They could certainly be written about, for when writing there is time to think, consider, and examine -- tasks real-time living just doesn't offer.

Nugent concludes with this overstatement: "But my experience can’t be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome." Not with responsible diagnosticians at the helm, it shouldn't. As a previously socially awkward, bookish kid who was and is clearly not on the spectrum and who was surrounded by plenty of peers of the same ilk, I can tell you -- it's not the same thing at all. Asperger's, as in the DSM-IV, requires far more than an inclination to read and a lack of a large group of friends.

While Nugent's layman's lament irks me, psychiatrist Paul Steinberg's Op-ed, Asperger's History of Over-Diagnosis, outright angers me. His main argument rests here: "True autism reflects major problems with receptive language (the ability to comprehend sounds and words) and with expressive language." Can receptive language be a problem for those on the spectrum? Certainly, and often expressive language is, too.

What troubles me is his definition of "receptive language," which he limits to comprehension of sounds and words. Language is far more than that. Receptive language includes understanding and using idioms and other figures of speech, reading body language and facial expressions, and appreciating the nuances expressed through pitch and tone (the latter to which he gives a nod on the expressive end). As I noted above, this paralanguage may be learned, but applying that knowledge in the real-time of relationships can be quite taxing. Limiting the definition of language, receptive or expressive, denies the very real disability many on the spectrum experience.

So under Steinberg's watch, where would all these socially awkward who clearly understand at least the literal spoken word be? Where would the children presenting with "classic autism" be if they acquire this receptive language? Are they no longer autistic? There is far more to the autism spectrum than one element, and "the ability to comprehend sounds and words" is hardly the litmus test for receptive language or autism. Steinberg advocates for a diagnostic rubric for a "social disability" rather than Asperger's, expressing concern that the Asperger's diagnosis could make life difficult for a person upon reaching adulthood. Somehow he imagines a new category -- not one with one of the A-words -- would smooth their path into adulthood.

Like Nugent, Steinberg ends his op-ed with overstatement that encourages misunderstanding and lack of appreciation for the challenges kids and adults on the spectrum face: "But, as Martha Denckla, a pediatric neurologist at Johns Hopkins University, has lamented, the only Americans in the future who will perhaps not be labeled as having a touch of Asperger syndrome will be politicians and lobbyists." He plays this "everyone has it" card both ways, earlier invoking the names of Einstein, Warren Buffet, and George Orwell as people who might have had Asperger's. What's not so subtly between the lines? That people who "really" have autism couldn't succeed as those men have. To be autistic, it seems, one must be unable to achieve.

As a parent of a child firmly on the autism spectrum, I am outraged. My son, now ten, has Asperger's. It takes little time with him to see that his mind works far differently than that of his older brother, either of his parents, or most of his friends. Yes, he's socially awkward. He's also profoundly verbally gifted, but that amazing vocabulary doesn't change the reality of his receptive language limits. All but the most overstated facial expressions, body language, tone, and pitch are largely lost on him. His diagnosis was slow to come, with years of "developmental delay" or PDD-NOS on various reports. There are numerous other symptoms that make his diagnosis clear, but his prodigious language abilities delayed that diagnosis. Because of simplistic, incomplete understandings of autism and Asperger's, his ability to speak at length about a variety of topics led therapists and doctors away from the diagnosis he has today. His ability to wordsmith is not incompatible with his place on the autistic spectrum.

And as for the new criteria of DSM-V for autism spectrum disorder? I imagine my son's brain will work just the same way as it does now after that change goes into effect. Will he meet the criteria? Most likely. But the rhetoric of the sort Paul Steinberg and Benjamin Nugent write does nothing to help him or others anywhere on the spectrum. Steinberg's assertion that "the ability to comprehend sound and speech" is the keystone to autism effectively negates the existence the autistics who have acquired those skills through hard work or always had those skills in place. It negates the highly verbal (either in voice or written word) autistic community that still struggles with their disability. Nugent negates those on the spectrum who aren't all about "chess and math," especially those who embrace writing as a form of expressing what can be so hard to do in face-to-face, verbal encounters. Both men miss the mark, increasing misunderstanding and alienating parts of the autistic community. Both attempt to deny the full spectrum of autism.

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Further recommended reading:
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A version of this essay was posted at quarksandquirks.wordpress.com

Wednesday, February 1, 2012

Restraint and Seclusion: In Your Child's School and Nationally

Mary Brandenburg and Tony Brandenburg
www.theebrandenburgs.blogspot.com

Trigger warning: discussion of aversives, restraint and seclusion; mistreatment of disabled people

Recently, a story that has been in the headlines regarding treatment of students with disabilities concerned an autistic 4th grade boy in Kentucky. Reportedly, the boy smirked and threw a ball in class.  The teachers' response to this behavior was to stuff him in a duffel bag and tie the drawstring so he couldn't get out. His mom was called to the school to deal with his behavior. She discovered him when she heard a voice calling from the army bag. Thankfully, he didn't suffocate, but who can measure the emotional trauma he suffered?

Another school in the news, the Judge Rotenberg Center, uses painful electrical shocks, restraint chairs, shackles and seclusion to control the behavior of people with disabilities. This center, which charges $200,000 yearly tuition, has lobbied extensively in Washington against legislation establishing regulations to protect students in schools. The Rotenberg Center is a $200,000 per year crime -- a "therapeutic" torture center conducting behavioral experiments on people with disabilities that has to be seen to be believed. Photojournalist Rick Friedman published a photoessay about the Center in January 2011.

The current headlines make it clear that all schoolchildren are at risk for seclusion and restraint in private and public schools across America, but it is also becoming clear that students with disabilities are disproportionately subjected to these abuses. It happens nationally; it happens locally; and it may be happening in your school district as it is in ours. Students with disabilities are often vulnerable to such abuses due not only to manifestations of their disabilities being viewed as "misbehavior" -- but also due to their ability to understand and then follow through on directions given to them. Aversive interventions are often used to force "compliance," as well as simply for the convenience of staff working with them -- to make their jobs easier.

On May 27, 2009, The Council of Parent Attorneys and Advocates (COPAA) issued a report, “Unsafe in the Schoolhouse: Abuse of Children with Disabilities”  on the use of aversive seclusion and restraints on children with disabilities.  The statistic that caught our eye was that  that 68% of the students who were subject to seclusion or restraints were diagnosed with Autism or Asperger syndrome. As this particular sub-group in the population becomes more focused, both in their civil rights and their sheer numbers -- as of the 2008-2009 school year about 0.7%  of the population of all students enrolled in US public schools -- they become more of an active political force to be recognized. They are increasingly mobile and vocal about abuses leveled at their peers. The use of aversives against this sub-group has not gone unnoticed.

There is very little research showing therapeutic or educational value for restraint or seclusion in the classroom. Further, aversives frequently trigger the fight/flight response, as well as long term psychological trauma. There are numerous documented cases of injury and death attributed to these practices. A report issued by the U.S. Government Accountability Office (GAO) in 2009  estimated that over 200 students have died as a result of school based seclusion and restraints between 1999 and 2009. Two hundred children, murdered in American schools. Indiscriminate use of aversives, by people untrained to provide the supports necessary to teach this population, is not an acceptable substitute for planned, positive, systematic behavioral support.

We, as parents, have seen first hand the lasting effects of the indiscriminate use of aversive interventions. This includes seclusion and/or restraints at school used on our own children. These are not isolated occurrences. The school district our children attend had had a track record of alienating autism parents. When  a new Director of Special Education was hired in 2010, she commissioned an audit of the district's Autism Education Program, which was finalized during 2010-2011 school year.  It may come as no surprise to families with experiences similar to ours that an area found to be in need of improvement involved behavioral planning and programming. This includes the necessity for intensive behavioral training for all District staff.

It has been months since the audit in our children's school district was finalized.  Only now is there a task force being formed to address the deficits found in the audit. In the meantime, there is again turnover in leadership; our district will be hiring a new Director of Special Education. My question is: what is happening to special education students in our district in the meantime?

On December 16, 2011, US Senator Tom Harkin (D-IA) introduced a new bill, the Keeping All Students Safe Act (S.2020). This important piece of legislation seeks to establish minimum nationwide standards to protect schoolchildren from physical and psychological harm resulting from aversive behavioral interventions, including restraints and seclusion.

Key provisions of S.2020:
  • Prohibits seclusion -- in locked, or separate rooms/enclosures that a child cannot exit from.
    • Across the US, schoolchildren have been locked/blocked into closets, storage rooms, and/or isolated for hours at a time in separate rooms, denied access to their education, for often minor infractions, such as protesting, refusing, or even tearing their schoolwork. This practice was commonly used with my own child, without notifying us, and irregardless of whether there was a true emergency situation.
  • Bans physical restraints except in emergency situations where there is an imminent threat of serious bodily injury. Prone restraint is prohibited, as are any restraints restricting breathing.
    • In your child's school or district, what defines threats of serious bodily injury? Does it include "crimes" such as breaking or throwing pencils, tearing papers, pinches, slaps, kicks, screams, etc.? Or does the definition of "serious bodily injury" follow Title 18 of the U.S. Code?
  • Prohibits mechanical restraints such as locking students into chairs/devices, taping or tying them to furniture ... including stuffing students into duffel bags.
  • Bans chemical restraints such as medications used to control behavior that are not administered in accordance with a physician's orders.
  • Prohibits aversive behavioral interventions that compromise health and safety by inflicting physical and/or emotional pain to change behavior. This includes denial of food, water, bathroom use, as well as sensory exploitation such as spraying water or chemicals in the face, forced feeding, bathroom time outs, forced trash pick up, etc.
  • Requires that parents be notified within 24 hours of a child being restrained.
    • Past practices at our child's school, including incidents involving our child, were that parents were notified of restraints and seclusion being employed with students on numerous occasions often months after the fact, if at all.
  • Establishes numerous provisions promoting positive school climate and culture through positive intervention practices emphasizing conflict management and de-escalation, including school wide use of positive behavioral interventions and supports.
Something for all parents, not only parents of students with IEPs, to think about:

Does your local school practice:
  • Disciplinary measures such as: social isolation or public humiliation (such as placing students' names on the board), time-out rooms, guidance rooms, sitting students apart but in view of their peers, confining the student to a bench during recess, trash pick-up, or ridicule based on learning differences?
  • Physical punishment? (Examples: making students run laps, not as a normal PE requirement, but as a consequence of behavior; forcing children to write as punishment; witholding meals and breaks -- even for a few minutes; trash pick-up; or sensory assaults such as blowing a whistle in class in close proximity to students)
  • Over-correction? (Examples: making a student do a task over and over, even if it causes distress, or holding a child accountable for an action for days.)
  • Are these punishments or "consequences" at your child's school approved by the school district? Are the results long-lasting and develop positive outcomes? Do they seem reasonable?
So, parents, while we wait for the legislators, self-study committees, and the revolving door of administrators to figure out what to do, it is our role to start asking ourselves:
  • What is acceptable practice? 
  • Just because it was done before, does it make it good practice now? 
  • Is that the best we can hope for in the future?
  • Are the established schoolwide practices at your child's school educationally, ethically, and socially sound?
  • If it is unacceptable to treat your child this way, is it acceptable to treat another family's children this way? 
  • Do some children 'deserve' to be punished differently and more forcefully because their behavior doesn't meet your standards of conduct? 
  • If your child were to became disabled tomorrow, would you feel the same way? 
  • Would you be OK if they shoved your child into a duffle bag?
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Editor's note: In the U.S., all children have a right to education at public expense.  The rights of children with disabilities to be educated is (in part) protected by the national law, the Individuals with Disabilities Education Act (IDEA). What is missing is the students' rights to be protected from abusive disciplinary policies.  

Among professionals, the discussion of "restraint and seclusion" as an ineffective response to students' behavioral challenges has been ongoing for more than a decade, as has research into positive behavioral supports.  However, the discussion has been slow to move into every-day classrooms. 

The "end restraint and seclusion in the classroom" movement started with the founding of  The Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS) in 2004. A bill, the Preventing Harmful Restraint and Seclusion in Schools Act (HR 4247), was introduced to the House and passed with bipartisan support in 2010, but failed in the Senate. A similar bill, the Keeping All Students Safe Act (S.2020) was introduced in December 2011. 

The following resources will help parents and allies to understand the need for the bill, and how to advocate for the bill's passage.

From the Editor -- Resources: