Friday, December 31, 2010

2010 In Review: Thanks to All Contributors

Liz Ditz
http://lizditz.typepad.com/i_speak_of_dreams/
http://lizditz.typepad.com/academic_remediation/

On behalf of my fellow editors, Emily Willingham, Jennifer Byde Myers, and Shannon des Roches Rosa, I'd like to thank all of the 2010 contributors to The Thinking Person's Guide to Autism.

What follows is an alphabetical list of contributors, with links to their TPGA posts, their website(s) and twitter accounts (where available -- some of our contributors have neither websites nor twitter accounts).

Eighty contributors. 120+ posts. Many, many different perspectives on autism. Autism through the lifetime. Thank you all.

  1. Kate Ahern, Living the Least Dangerous Assumption. Blog: http://teachinglearnerswithmultipleneeds.blogspot.com/. Twitter: http://twitter.com/#!/teechkidz . Presentations: http://www.slideshare.net/teechkidz
  2. Kyra Anderson, Bring Everyone Out. Blog: http://kyraanderson.wordpress.com/
  3. Anonymous Special Needs Professional, Why I Can't Breathe Tonight
  4. Emma Apple, If the Scarf Fits Blog: http://www.bluehijabday.com/ Twitter: http://twitter.com/#!/bluehijabday
  5. Devon Koren Asdell, How I Know Vaccines Didn't Cause My Daughter's Autism Blog: http://community.advanceweb.com/blogs/ot_9/ . Website: http://dkoren.freeshell.org/.
  6. Stacey Ashlund, Comparative Misery and a Born-Again Buddhist Blog on education and special needs: http://sashlund.posterous.com/; professional website: http://www.staceyashlund.com/ Twitter at http://twitter.com/#!/sashlund/
  7. Asperger's Ninja, When A Single Mother of a Special Needs Child Is Suddenly Ill Blog:http://aspergerninja.blogspot.com/ Twitter: http://twitter.com/#!/aspergerninja
  8. Elise AKA aspergers2mom contributed 3 posts: (1) We Fight The Fights That Are Worth Fighting (2) Don't Yell. Embrace Your Inner Bitch Instead (3) Raising Asperger's Kids: Generalizing the Specifics. Blog: http://asd2mom.blogspot.com/ Twitter: http://twitter.com/#!/aspergers2mom
  9. Katharine Beals PhD,What Is An Appropriate Education for An Autistic Child. Blog: http://oilf.blogspot.com/
  10. Corina Lynn Becker contributed two posts (1) What I Want People to Know and (2) Autism, Apps, and Adults Primary blog: http://nostereotypeshere.blogspot.com/. Reviewing applications for adults with autism: http://autisticapp.blogspot.com/. Twitter: http://twitter.com/#!/CorinaBecker
  11. Laura Bobcat's video was featured in TPGA end to 2010. More of her videos: http://www.youtube.com/user/goo200
  12. Barbara H. Boucher OT, PhD, PT, What to Ask of an Occupational Therapist. Blog: http://therextras.typepad.com/ Twitter: http://twitter.com/#!/therextras/
  13. Alysia K. Butler contributed two posts (1) Lean On Me and (2) Rainy Days and Mondays. Blog: http://trydefyinggravity.wordpress.com/. Twitter: http://twitter.com/#!/trydefyinggrav/
  14. Liane Kupferberg-Carter contributed two posts (1) The One-Two Punch of Autism: The Case for Insuring Our Kids' Future and (2) The Crucial String She publishes at http://www.huffingtonpost.com/liane-kupferberg-carter and http://open.salon.com/blog/lkc
  15. Sara Chapman, MA, DIR/Floortime: An Introduction Professional website: http://www.playconnectlearn.com/. Twitter http://twitter.com/#!/sarabethchapman
  16. Kristina Chew, PhD contributed two posts (1) Choosing a School for Children on the Autism Spectrum and (2) Special Ed 101. Blog http://autism.typepad.com/ (about life with her son with autism); Blog: http://www.care2.com/causes/author/autismvox/. (issues / causes). Twitter: http://twitter.com/#!/autismvox
  17. Clay, For the 85% of Us Who Can't Work. Blog: http://cometscorner-clay.blogspot.com/. Twitter: http://twitter.com/#!/Mooncatadams/
  18. Rachel Cohen-Rottenberg contributed three posts
  19. Daniel Dage, Writing Effective IEP Goals and Objectives: Suggestions for Teachers and Parents Blog: http://specialed.wordpress.com/
  20. Christa Dahlstrom, Just Passing Through Blog: http://hyperlexicon.blogspot.com/. Twitter: http://twitter.com/#!/hyperlexicon/
  21. Liz Ditz (TPGA editor) contributed three blog posts (1) Holiday Wrap-up; (2)Thoughts are Turning Back to School and (3)2001 in Review: Thanks to All Contributors Blog:
    http://lizditz.typepad.com/i_speak_of_dreams/ (multi-issue, personal); Blog: http://lizditz.typepad.com/academic_remediation/. (issues around learning disabilities/schools struggles). Twitter: http://twitter.com/#!/lizditz and http://twitter.com/#!/k_5remediation
  22. Lisa Domican, Grace Needed an App, so Her Mom Created One . Professional website: http://graceappforautismoniphone.blogspot.com/
  23. Michael V. Dreher, Being Employed With Asperger's Syndrome. Twitter: http://twitter.com/#!/maialideth
  24. Judy Endow, MSW, Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Autism Spectrum Disorders. Professional website: http://www.asperger.net/
  25. Susan Etlinger, The Inclusion Dance. Blog: http://susanetlinger.typepad.com/the_family_room/ (personal); blog: http://susanetlinger.wordpress.com/(professional) Twitter: t http://twitter.com/#!/setlinger
  26. Domestic Goddess, This One Goes All The Way to Eleven. Blog: http://thedgoddess.com/. Twitter: http://twitter.com/#!/thedgoddess
  27. Karen B. Golightly, How Pip Dealt With Costa Rica
  28. Shawn C. Graves, Tree
  29. Amy Greatbanks, The First Rule of the Autism Club Blog: http://ishouldhavecalledhimcalvin.wordpress.com/.
  30. Carol Greenberg contributed two posts (1) Rotten Food, Lousy Service: Dodge the Restaurant Mentality to Get Your Kids the Services They Need and (2) I'm An Embarrassment. Professional blog: http://aspieadvocate-ascd.blogspot.com/.Professional website: http://www.bklynsnc.com/. Twitter: http://twitter.com/#!/Aspieadvocate
  31. Prather Harrell, On the Verge of a Meltdown. She is associated with http://www.africanamericanautismofaz.org/index.php
  32. Michelle Hecht MA, BCBA, What is Applied Behavior Analysis, and Why You Want a Behavior Analyst On Your Child’s Team
  33. Lynn Hudoba, When Couples Disagree over Biomedical Approaches for Autism. Blog: http://www.autismarmymom.com/ . Twitter: http://twitter.com/#!/autismarmymom
  34. Dr. Claire Hughes-Lynch, Advertising for Autism. Blog: http://professormother.com/
  35. Jess contributed two blog posts for TPGA (1) Welcome to the Club and (2) All You Need to Know. Blog: http://adiaryofamom.wordpress.com/ . Twitter: http://twitter.com/#!/diaryofamom
  36. Jillsmo contributed two blog posts for TPGA (1 )Autism Contradictions and (2) Will He Be Happy? Blog: http://yeahgoodtimes.blogspot.com/ .Twitter: http://twitter.com/#!/jillsmo
  37. Jennifer Johnson contributed two blog posts for TPGA (1) A Short Cut for Making PECS-Style Icons and (2) Creating A Special Needs Binder
  38. Lisa Brandolo Johnson, Why Every Decision I Make Matters. Professional site: http://www.grembe.com/; Twitter: http://twitter.com/#!/grembe/
  39. JoyMama,When A Mom Says Something Works: GFCF Diet. Blog: http://elvis-sightings.blogspot.com/.
  40. Kai, Teamwork. Blog: http://autismtwins.blogspot.com/
  41. Mir Kamin,The Keeper: A Tale of Late-Childhood Asperger's Diagnosis. Blog: http://wouldashoulda.com/
  42. Molly Keene, Progress. Blog: http://keenesandco.blogspot.com/
  43. Brian R. King, LCSW, The "R" Word Revisited . Professional blog: http://spectrummentor.com/; Twitter: http://twitter.com/#!/brianrking
  44. Estee Klar, A Single Mom’s View of Autism Divorce Rates . Her blog is at http://www.esteeklar.com/ and you can follow her on twitter at http://twitter.com/#!/EsteeKlar
  45. Judy McCrary Koeppen MS, CCC-SLP Autism: Feeding Issues and Picky Eaters Professional website: http://www.sagetherapy.com/Sage_Therapy/Home.html
  46. Rob Lambert, M.D., Arbitrary Normality Blog: http://distractible.org/ . Twitter: http://twitter.com/#!/doc_rob/
  47. Kev Leitch, Coming to Terms. Blog: http://www.leftbrainrightbrain.co.uk/. Twitter: http://twitter.com/#!/kevleitch/
  48. Diane Levinthal, Inclusion Make it an Open Classroom Professional site: http://www.socialstrides.com/
  49. J. Lorraine Martin contributed two posts to TPGA (1) The Miracle By the Lobster Tank and (2) After the Thunderstorm Blog: http://cheeselesspizza.blogspot.com/ Twitter: http://twitter.com/#!/jlorrie
  50. Jennifer Minnelli, M.S., CCC-SLP contributed three posts to TPGA (1) My Child and Me – Keeping Everyone Honest (Or, the Therapists We've Fired);(2) Cycles of Grief and Parenting a Child With Special Needs and (3) Book Review: Coloring Outside of Autism's Lines Professional site:http://www.autismsphere.com/
  51. Jennifer Byde Myers (TPGA editor) contributed four posts to TPGA (1) Kodachrome (2) Meeting Maddy (3) Buying Hope (4)(with Shannon des Roches Rosa) Creating A Special Education PTA Blog: http://jennyalice.blogspot.com/ Travel blog: http://www.haveautismwilltravel.blogspot.com/ Special Education PTA Website: http://www.septar.org/ Twitter:http://twitter.com/#!/jennyalice
  52. Lindsey Nebeker, So What's the Fascination With Autism and Sex? Twitter: http://twitter.com/#!/autismisarose
  53. Kristin Neff, Ph.D, On Autism and Self-Compassion. Website: http://www.self-compassion.org/ Movie website: http://www.horseboymovie.com/
  54. Sarah Oriel, Autism Service Dogs Blog: http://planetjosh.squarespace.com/.
  55. Elaine Park, The Child Can't Spell
  56. Rory Patton, Reflections on Mature Autism Blog:http://springingtiger.wordpress.com/ Twitter:http://twitter.com/#!/springingtiger
  57. Pia Prevenost, An Open Letter to Special Needs Professionals Blog: http://www.thecrackandthelight.com/
  58. Holly Robinson Peete, Shifting Focus: Eight Facts About Autism The Media Aren't Covering. Foundation website: http://www.hollyrod.org/ Twitter: http://twitter.com/#!/hollyrod4kids, http://twitter.com/#!/hollyRpeete
  59. Shannon des Roches Rosa (TPGA editor) contributed eleven posts: (1) Identifying and Avoiding Autism Cults; (2) Outings, Travel, and Autism; (3) Autism Parenting and the Importance of Attitude; (4) Does Your Child With Autism Have a Daily Record?; (5) When You're Gone: Practical Planning for Your Child's Future; (6) Why My Child With Autism Is Fully Vaccinated; (7) Autism and Potty Training: Never Give Up Hope; (8) Have A Merry but Modified Halloween; (9) (with TPGA editor Jennifer Byde Myers) Creating A Special Education PTA (10) (with Robert Rummel-Hudson) iPads Near Miracles for Kids with Autism (11)Autism and Holidays: Success Through Meticulous Planning. Blog: http://www.squidalicious.com/ Special Education PTA Website: http://www.septar.org/ BlogHer posts: http://www.blogher.com/user/119/posts Twitter: http://twitter.com/#!/shannonrosa
  60. Brenda Rothman, The Eyes of Autism. Blog:http://mamabegood.blogspot.com/
  61. Robert Rummel-Hudson (with Shannon des Roches Rosa) iPads Near Miracles for Kids with Autism Blog: http://www.schuylersmonsterblog.com/ Twitter: http://twitter.com/#!/rumhud/
  62. Kelly V. Russell, My Child Has Autism... Blog: http://2006housewife.blogspot.com/
  63. Jordan S. Sadler MS, CCC-SLP contributed two posts to TPGA (1) What A Great Speech Language Pathologist Can Do For You and (2) Thoughts on Prognosis from as Speech Language Pathologist Professional Website: http://www.communicationtherapy.net/ Twitter http://twitter.com/#!/CommTx/
  64. Sarah Schneider contributed three posts to TPGA (1) Defective (2) Keeping Score (3) I'm Getting a Vibe Blog:http://www.kitaiskasandwich.com/ Twitter: http://twitter.com/#!/kitaiska
  65. Heather E. Sedlock, Autism: Rainbows Abound. Blog:http://www.examiner.com/special-needs-kids-in-national/heather-sedlock Twitter: http://twitter.com/#!/Heather_Sedlock
  66. Susan Senator, All His Base Are Belong To Him Blog:http://susansenator.com/blog/ Twitter: http://twitter.com/#!/SusanSenator
  67. Laura Shumaker contributed two posts to TPGA (1) Adolescence and (2) Moving Day. Blog: http://www.sfgate.com/cgi-bin/blogs/lshumaker/index Website: http://www.laurashumaker.com/ Twitter: http://twitter.com/#!/RGmom
  68. Kristen Spina, (Extra) Ordinary Days Blog: http://kristenspina.wordpress.com/
  69. Squillo, What Now? 10 Tips for Families with a New Autism Diagnosis Blog: http://confutata.com/ Twitter:http://twitter.com/#!/Confutata
  70. Mike Stanton, What Is Neurodiversity? Blog:http://actionforautism.co.uk/
  71. Hartley Steiner contributed three posts to TPGA (1) All Showers Lead to Australia (2) Sensory Seekers and Sensory Avoiders (3) Thanksgiving Table Manners. Blog: http://www.hartleysboys.com/ Twitter: http://twitter.com/#!/ParentingSPD/
  72. Lou Tecpanecatl, Autism Isn't Invisible Any More Blog: http://ourlifewithdiego.blogspot.com/ Twitter: http://twitter.com/#!/loubega1/
  73. Frances Vega-Costas, Autism is an Equal Opportunity Disorder Blogs: http://www.viviendoenotradimension.com/ and http://dimensionautismo.blogspot.com/.
  74. Susan Walton, Getting to Know Your New Neighborhood: Reaching Out and Building a Network Professional site: http://susanwaltonbooks.com/ Twitter: http://twitter.com/#!/swalton47
  75. Emily Willingham (TPGA editor) contributed four posts to TPGA (1) Autism and Environmental Chemicals: A Call for Caution (2) (with Kim Wombles) Autism and Biomed Protocols: A Primer on Pseudoscience (3) How Do People React When They Learn Your Child Has Special Needs and (4) Recent Autism Studies In the News: Overpromising, Big Time Personal blog: http://daisymayfattypants.blogspot.com/; biology blog: http://biologyfiles.wordpress.com/; bullying blog: http://endthebullying.wordpress.com/ Twitter: personal:http://twitter.com/#!/ejwillingham biology: http://twitter.com/#!/biolotrix; bullying: http://twitter.com/#!/endbullying1/
  76. Jean Winegardner, 'Autistic' or 'Person With Autism'? Blogs: http://www.stimeyland.com/ and http://communities.washingtontimes.com/neighborhood/autism-unexpected/ Twitter: http://twitter.com/#!/stimey
  77. Kim Wombles contributed two posts to TPGA (1) Questionable Autism Approaches: Facilitated Communication and Rapid Prompting Method and (2) (with Emily Willingham) Autism and Biomed Protocols: A Primer on Pseudoscience Blog: http://kwomblescountering.blogspot.com/ Twitter: http://twitter.com/#!/kwombles
  78. Caitlin Wray contributed three blog posts to TPGA (1)Be the Change: How to Shift Autism into the Mainstream; (2) Why We Fear Passion and (3)Advocacy 101: How to Write an Effective Letter Blog: http://www.welcome-to-normal.com/
  79. Sandy Yim,Why Closed Captioning Isn't Just for Deaf People Blog: http://www.aspieteacher.com/ Twitter: http://twitter.com/#!/AspieTeacher/

Wednesday, December 29, 2010

And Thoughts are Turning Back to School

Liz Ditz
http://lizditz.typepad.com/i_speak_of_dreams/
http://lizditz.typepad.com/academic_remediation/


I know we said a break, but...

Today, Gary Brannigan PhD and Howard Margolis PhD (the authors of a great book, Reading Disabilities: Beating the Odds) published a blog post Stonewalling the IEP. While Brannigan and Margolis are writing about specifically reading issues, their advice can be generalized to all kinds of issues.

The blog post is particularly about "Present Levels of Performance" and how many IEP teams skimp this section. Brannigan and Margolis suggest there are four reasons:
  1. The school members of the IEP Team don’t know how to develop a Present Levels section that’s complete, meaningful, and functional.
  2. The district’s evaluations failed to supplement norm-referenced data from standardized tests with instructionally-relevant functional information.
  3. School members of your child’s IEP Team have overwhelming caseloads.
  4. (Rarely): To wear parents out and send a message to other parents: “Be satisfied with what we give you.”
Brannigan and Margolis give possible solutions for each of the reasons.

The first reason reminded me of Daniel Dage's post, Writing Effective IEP Goals and Objectives: Suggestions for Teachers and Parents.
What most parents (and an embarrassing number of teachers) don't realize is that goals and objectives are what are going to drive the students’ placement and services during the coming school year. While a Behavioral Intervention Plan (BIP) is the most abused part of the IEP, the goals and objectives are among the most neglected.
Be sure to read his whole series on IEP at his blog, The Life that Chose Me, or at least the section on Present Levels of Performance.

The second reason can be mystifying to parents new to special education. For demystification, I recommend the resources at Wrightslaw, specifically Tests and Measurements for Parents (and advocates...) and the slideshow on tests and measurements. The Wrightslaw bookstore has even more resources for purchase. Kristina Chew's article here, Special Education 101, is also a good place to start.

The third and fourth reasons reminded me of three posts here: the first by Elise, AKA aspergers2mom, Embrace Your Inner Bitch:

What do you do if you are faced with a problematic situation? How do you channel your frustrations to get your child the services they need? It wasn’t until I was in my forties that I learned that you need to do what you need to do for your kids -- who cares what others think? This is what I call "embracing your inner bitch."

Now, embracing your inner bitch is a good thing. You use your frustration and your anger to motivate you, but you do so in a way that is calm, intelligent, and very thought-out. You leave the yelling and the kvetching and the breakdowns for home, Facebook, or Twitter (as long as someone from your district isn’t following you on social media). So the question becomes: how do you get what your child needs without throwing a fit?

The second post, from Caitlin Wray, is Advocacy 101 How to Write An Effective Letter
Odds are at some point in your role as your child's advocate, you will need to write a letter to the powers that be. A masterfully crafted letter can be an incredibly powerful weapon in an advocate's arsenal, but it’s often not an intuitive process; there are unwritten rules and unspoken expectations that need to be addressed, if you're to achieve maximum effectiveness.
The third post is from Shannon des RochesRosa and Jennifer Byde Myers, on Creating a Special Education PTA
It’s not always easy to connect with parents like us. These kids we love so much are vulnerable, they need us – and the demands of our extra-intense parenting can leave us feeling drained and isolated. But if you can muster a burst of energy and round up a few like-minded individuals, then you can create your own community: by forming a Special Education Parent Teacher Association, or SEPTA.
I first read the following on the late, lamented SchwabLearning Parents' Forum, and took it to heart. It was recently reprinted at the Wrightslaw blog
1 person = A fruitcake
2 people = A fruitcake and a friend
3 people = Troublemakers
5 people = “Let’s have a meeting”
10 people = “We’d better listen”
25 people = “Our dear friends”
50 people = "A powerful organization”

If you collaborate with other parents and organizations, you can make a difference. There is strength and power in numbers.

Monday, December 27, 2010

Holiday Wrap-Up

Liz Ditz

http://lizditz.typepad.com/i_speak_of_dreams/
http://lizditz.typepad.com/academic_remediation/

The editorial team here all thought we would all take a break until January 3rd, 2011 but I changed my mind.

This year, I actually wrote down all the recipes I used so I'd remember them next year, and I thought we could use this time to note down what worked and what didn't, as far as the holidays, travel, and autism are concerned.

Shannon shared her tips and those gleaned from others in Autism and Holidays: Success Through Meticulous Planning
(inclused my new favorite seasonal carol, Let Me Stim, Let Me Stim, Let Me Stim.

Here are a few more autism & Christmas posts from around the blogosphere:

Caren Zucker at the Daily Beast wrote Christmas With My Autistic Son, (also at TheMcGlynn) in which there was a failure of communication, which resolved into increased family closeness. Check out Mickey's Christmas list!

Lisa Jo Rudy at Autism.About.com asked her regular readers to share their thoughts about autism and the holidays. The conversation there is about gifts (regularity of) and family (sometimes misunderstanding or painfully, not accepting the family member with autism).

At Autisable, Leisa Hammet reflects on Christmas with Autism, now that her child with autism is well into her teens, and how she has adapted to her child's language skills.

At Autism Learning Felt, Tammy's family had a great Christmas, with just the right gifts and support from the family.

At Autism Blogger, Sher2020 was second-guessing some of her Christmas decisions for her son, in particular the types of gifts appropriate for a mid-teens boy with autism.

At Adventures in Extreme Parenting, Sunday reflects on how many families adapt their Christmas traditions to suit family members with autism, in Autism: Different but Not Less.

For many, Christmas includes travel. The editorial team here are champion travelers, including the big expedition undertaken this summer by the Myers family in Have Autism, Will Travel.

Earlier this year, Lou Tecpanecatl reflected on a previous year's holiday travel, in Autism Isn't Invisible Anymore

Shannon Rosa's Autism, Travel and Outings was published in the summer, but is always appropriate.

Kristina Chew's family stayed home, but experimented with visiting the airport

There's a smattering.

What worked in your holiday plans this year? How will you simplify or make things different next year?

Friday, December 24, 2010

A TPGA End to 2010

 In the spirit of evidence-based and informed approaches, enjoy:

Autism 101: Parenting advice from total strangers



We're going to be celebrating the holidays with a wee break from posting essays - may you all have reasons to celebrate, too. Happy holidays, happy new year, and see you on January 3rd.

Video from Laura Bobcat/www.youtube.com/user/goo200

Wednesday, December 22, 2010

Recent Autism Studies in the News: Overpromising, Big Time

Emily Willingham, Ph.D
daisymayfattypants.blogspot.com
biologyfiles.wordpress.com

Two autism studies made recent headlines: How a Gene Mutation Leads to Autism and Proximity to Freeway Increases Autism Risk. The first is a close-up on a particular gene using mice as a model and the other is an epidemiological study. The mouse study examined a gene/protein known as SHANK3, which has been implicated previously in autism. The epidemiological study looked at correlations between living near highways and autism rates.

Let’s take a look at the mouse study [PDF] first. SHANK3 has emerged as a protein of interest because of its roles in nerve connectivity. Researchers also have found that losing one copy of the SHANK3 gene -- normally, people have two functional copies -- can be associated with behaviors linked to autism. The authors of this new mouse study, which is being published in Molecular Autism, decided to knock out one Shank3 copy in mice to monitor the results. They looked specifically at connections among nerves and at social behaviors in mice missing a copy of the gene and compared them to genetically intact animals.

It’s always important to remember that people are not giant, tailless rodents. Mice are good models for whole-organism investigations of a gene’s effects, but they serve only as a starting point. The researchers found that mice missing a copy of Shank3 had deficits in nerve connectivity and in flexibility of forming nerve pathways. Animals lacking the gene also differed in their male-female social interactions.

From what we know about autism, social deficits aren’t limited to communications between males and females but cover a range of interactions. It’s unclear why the authors selected this male-female interaction as one of their behavioral tests, as such specificity is not a key manifestation of autism spectrum disorders. They do not describe their rationale in the paper.

One thing is clear: they used a behavioral test developed specifically for autism models, and the mice lacking a copy of Shank3 did fine on it. In other words, on an autism-specific behavioral test, the Shank3-less animals were no different than their genetically intact counterparts. Indeed, the authors do not even mention this outcome in their results but describe it briefly in the discussion. This finding seems to imply that for the specifically autism-related outcome, a missing copy of Shank3 had no effect at all.

This study looked at a missing copy of Shank3 . But too much SHANK3 also has been associated with ASDs, as has mutation in SHANK2, a related gene. Sure, this stuff is intriguing, but it’s not the promised How a Gene Mutation Leads to Autism as at least one headline put it. A better headline is “Gene changes linked to differential brain structure and behavior in mice,” but the latter, while accurate, doesn’t reach out and grab readers as the former does.

This kind of overpromising doesn’t help autistic people or autism families. This study has not clarified a role for SHANK3 specific to autism, yet in a news release associated with the work, one of the authors is quoted as saying, “These results have helped us determine a pathological mechanism behind neurodevelopmental disorders like autism.” The release goes on to say, “Armed with this breakthrough, we can begin testing drug compounds that treat the disease at its root cause, improving nerve cell communication.”

This is overpromising, big time. This paper has not defined a “pathological mechanism” for autism. Their animals didn’t even show differences on an autism-related test. At most, they’ve identified a link between SHANK3 and intersexual behaviors, differential brain structure, and nerve communication.

Furthermore, researchers are nowhere near testing drug compounds to target SHANK3 for autism. Evidence for a connection between SHANK3 and autism is sketchy, at best. While this gene shows some association with autism in a few studies, it certainly is not the autism gene. Indeed, there are likely many, many genes associated with the spectrum of behaviors and other signs of autism. SHANK3, if it is related to autism, is simply one of many, many possible candidates. This study has not changed that.

The freeway proximity epidemiological study is on even shakier ground. Such studies simply identify associations, using data to identify links between different types of information. This particular study, published in the open-access journal Environmental Health Perspectives, examined associations between autism rates and proximity to highways. The authors report that proximity to freeways during the third trimester of development was associated with twice the risk of autism, while proximity to freeways at birth was associated with just under twice the risk. The authors suggest an examination of associations with air pollutants.

And therein lies the problem with epidemiology -- the gap between a numbers game of correlation and real cause-effect. Why didn’t the authors access some of the available data on air pollution in their areas of study? Having done so would have provided a much more solid rationale for even suggesting it.

Oddly enough, the authors found no correlation between autism and living near other busy highways, or “major roads” as they refer to them in the study. Only freeways. More confusing, they define freeway “as a state highway or interstate highway,” and a major road “as a state highway, interstate highway, or major arterial.”

Even for people living very close to a “major road” -- as close as 42 meters -- the autism rates weren’t greater. Only for people living 309 meters or closer to a “freeway” showed this association. That’s a bit of a problem, as it undermines any conclusion that proximity to a busy highway -- you say Interstate 5, I say US 99 -- might be associated with autism rates. If there is something busy-highway-specific about autism ... wouldn’t one expect that any busy highway would show the association? And wouldn’t being closer to a busy highway kick up the connection?

They report no data on air pollution, even though suggestion that air pollution might be a factor could be fairly easily checked. If air pollution were causative in autism, then an association between bad air and autism rates should emerge in the world’s worst-polluted areas. The authors don’t comment on this and don’t provide any data.

In other words, this study seems dodgy even for epidemiological studies. If you live near a freeway (but no worries about major roads!) and are pregnant, there’s likely little need for you to start to make relocation plans.

For a more-detailed look at this paper and a closer analysis of the findings, I highly recommend David Gorski’s take over at Science-Based Medicine. He notes another glaring absence from the study: A consideration of population density and urbanicity as confounding factors. In other words, the authors failed to include these in their analyses. Either of these factors might be the true link to autism rates in this study, with freeways merely serving as, well, the road that connects them.

----

As always, we encourage readers to look behind the headlines when autism is involved. -Eds

Monday, December 20, 2010

I'm an Embarrassment

Carol Greenburg
aspieadvocate-ascd.blogspot.com

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

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

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

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

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

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

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

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This essay was original published at Carol's new AspieAdvocate blog, http://aspieadvocate-ascd.blogspot.com

Wednesday, December 15, 2010

Raising Asperger's Kids: Generalizing the Specifics

Elise aka aspergers2mom
asd2mom.blogspot.com

A primary issue for children on the autism spectrum is generalization: the ability to take what they learn from one situation and apply it in a totally different scenario. The scenarios may not even be all that different, but introduce a new dynamic or remove a familiar item, and the child can get thrown off kilter and lose the resources they just learned. It's similar to the issues my younger son, HSB, has in math. When given a math formula and the appropriate number equivalents for the algebraic letters, he is able to apply the formula and even understands the reasoning and purpose. But if he is required to take that formula and apply in an unfamiliar word problem or with an unfamiliar set of numbers, he will get lost. He is not able to generalize the specific information that he learned for that math equation. So too, do autistic children have issues being able to understand how certain appropriate behaviors are applied across the board and are general to the entire social paradigm. The question then becomes: how can you help them understand how to accomplish this goal? What can you do to help your child relate their social lessons to each and every situation that they face?

Interestingly, Dr. Temple Grandin accomplishes this task by keeping what she terms a running Rolodex of social situations in her head. She remembers them as if they were social stories, so that she is able to access and filter what she needs to accomplish, how, when, and even why. However, that is not how most of our children will function. It is actually an intriguing idea and concept to use your brain as if it were a social story computer, but that is not going to work for everyone. Especially those like HSB who have a working memory shortfall.

So what do you do? Well to start with, you do teach for the moment. As I always say, you take each moment as it comes. You get them through the challenge of the hour and then when all is calm and all is quiet you sit them down and continue the lesson. You point out to them what happened and how it was dealt with. You talk it through with them what was and was not appropriate. You problem solve how they could have done things better or how they actually did terrifically. You make them understand that certain behaviors that they accomplished at that given moment are actually a general concept and that it should be applied liberally.

For example: How does someone behave in a grocery store? You practice looking for your items. You practice walking appropriately in the aisles. You practice waiting your turn at the check out and you practice asking for help from one of the sales clerks. When they accomplish these goals in navigating the supermarket, you next take them to the toy store. You pre-teach the situation by reminding them of the appropriate behaviors in the supermarket and how they apply in the toy store as well. You can use social stories, flash cards, and even basic children’s books on what happens when their favorite character goes to the toy store. You try to get them to understand that behavior in a public store is the same in every store.

Now without a doubt you do not have to follow the supermarket with a toy store. In fact, since our children do have the hardest time in toy stores, (the choices can overwhelm them and they are unable to choose a toy) I would actually even make that one of the last lessons you teach. But that is something you and you alone are going to have to decide how to handle, and when to challenge your child's learning by testing with a visit to a toy store.

Another important point: if your child is not following the rules, don't be afraid to leave the store.

I can’t tell you how many times I have left a grocery cart full of items because the boys may have been acting up at that moment. If you cannot calm them down, you leave. There may be a myriad of reasons for the meltdown. There can be a sensory overload, which even if you calm them down initially may just erupt again, so be prepared. There may be the tantrum that they want Cocoa Puffs instead of Cheerios for breakfast. This is the tricky part, because our children do have a hard time making choices, but you cannot let them tantrum, you cannot let them melt down, and you above all cannot give into their desire to have both cereals, or give them the cereal you do not want them to have.

You need to be aware of the difference between meltdown and tantrum, whether your child is having issues because of the autism, or issues because they are children and want what they want when they want it. However, in many of these situations your response has to be the same: you must walk away. It breaks your heart, especially when you know that it is a sensory issue or their inability to choose, but they must learn to choose. They must learn to channel their coping skills with sensory issues as well. Again, this is where the pre-teaching comes in. The preparation before the excursion can help with these situations.

It doesn't always work. At some points you may think your child is never ever going to learn how to choose one item from a store, or understand that they just can’t have a certain type of food. I still remember the day I took nursery school-aged HSB to the local candy/toy store. I told him going in that he could only have one toy. We practiced it and we talked about it. So lo and behold he decides he wants two toys. I reminded him that he had to choose one. That was the rule. I even helped him by choosing the toy for him. But he started to tantrum that he wanted both.

I am quite aware that as a child on the spectrum he saw what he saw and he wanted it. That perhaps in many ways he was unable to truly choose and that without both toys his internal systems told him that his life was going to be miserable. However, that is not life. Reality is that you have to make choices. You must choose between toys. We teach this lesson not because we want to be cruel, but because we know that there will come a time in life that your child will have to choose between food and a video game or health insurance and a manga. You cannot begin to teach this coping skill when they are 30 years old. This is a skill that takes a lifetime of teaching. You must begin sometime. They have to understand, as all persons do, that there are limits and those limits are part of the social construct that they will be living in. Yes, as with all things in the social realm this can be harder for them to understand and grasp than for someone who is neurotypical, but they can grasp it. It just may take an inordinate amount of time and make you feel like the Wicked Witch of the West.

Honestly, this also goes for being able to curtail certain habits, or resist the urge to eat junk food, or developing good sleeping habits. Learning limits, whether about toys, candy, spending, or appropriate behavior, leads to a better life and a more successful view of the world. And whether we think so or not, when they are three and crying their eyes out because you didn’t buy them that toy, they just may thank us one day when they are able to live on their own, successfully leading the life they choose for themselves. (OK not thank us, but at least not call us names anymore.)

By the way, the story in the candy/toy store ends with me actually picking HSB up and putting him under my arm and carrying him out of the store. I told him he had to choose and when he threw a fit, refused to choose we left the store. Did it have an immediate impact on his ability or desire to make choices? No. I would be lying if I said it did. It still took time and several more store episodes for him to understand that life is a series of choices, but he learned and even over time he learned that sometimes the choices you make are not the ones you want, but they are the ones you have to deal with.

The reality is that there are basic concepts that our children need to be taught and they can be taught in many ways. Here is a small list of generalized behaviors:
  1. Walking and speaking appropriately in a store.
  2. Finding the item you want in the proper way: looking at markers in the store or asking for help appropriately
  3. Standing in line to pay, and waiting your turn if there is any kind of issue to be addressed.
  4. Making sure that you have the right amount of money to pay for the item (of course this is for older children who may need to even pay for their own lunch at school). However, you can start this process by pointing out to your child how you are paying for the item and that the money is in the bank or even handing over cash when you pay. (It is interesting to note, that persons on the autism spectrum can have very bad relationships with money. Budgeting and money management needs to be reinforced from a young age.)
  5. Using proper etiquette when speaking to someone: thank you, please, you're welcome -- it all goes a long way in gaining acceptance and help in society. Demanding and requiring someone to do something for you generally gets no one anywhere.
Our children need to learn to recognize these social attributes. It's essential. So many of our children, due to their speech issues, auditory processing and language issues, have modulation issues as well and their anxiety comes out in their actions/tone of voice. They may be very anxious in any given social situation and it may come out in the way they address someone in a store. The clerk will think your child is being rude or obnoxious when they are simply anxious. Try to get your child to recognize how their body feels, teach them how to cope with the public/social anxiety.

The truth of the matter is that as with everything that our children do, it is only through practice and more practice and even more practice that they will learn to generalize in social situations. Now as far as math is concerned, it took a lot of work to be able to generalize the formulas and at times HSB still does not get it. But that is OK. We came to the conclusion a long time ago that HSB is not going to be a theoretical physicist or an electrical engineer. But interestingly enough he is able to generalize criticism and attributes of video games and films. It seems that is where his abilities lie, which is a good thing considering that is where he has pinned his future career hopes. Of course, he is still going to have to learn to make choices and you know what, he still doesn’t like that, but luckily he doesn’t throw tantrums anymore, because at almost 6 feet and 200 pounds he is just too big for me to put under my arm and walk out of a store.

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A version of this essay appeared on Elise's blog, asd2mom.blogspot.com.

Monday, December 13, 2010

This One Goes to Eleven

The Domestic Goddess

There are days when I'm a bit arrogant and a know-it-all and I'm all, "Autism? Expert!" and things run smoothly and calmly and we almost feel normal around here.

Normal. Whatever that is.

Then there are days like the last two. It's like being caught in a tennis match, except the ball moves faster than the speed of light and I get a bit dizzy. Bugaboo is fast, y'all.

See, here's the thing about autism: When you've met one child with autism you've met one child with autism. It's like snowflakes, no two are alike. My two couldn't be further apart in terms of functioning. You know, like onions. Onions have layers (name that movie for five points. Six if you name the character who says it).

And children with autism? Are very complex. They have many layers, many colors, many idiosyncrasies. Many things that make them quite unique. Yes, all children are complex. But autism? This one goes to eleven.


Even his moods go to eleven.

Trust me when I say they just push the envelope that much further. They are just a wee bit louder. And more intense. Did I mention louder? Because Loud + autistic kids + sensory issues = HAPPY FUN TIME. Also?  Steroids + Autism + ADHD = OMG HAPPY FREAKING FUN TIME.

At least we're never bored.

Bugaboo has been spending tons of time in his room for the past two days. Two nights ago he emptied most of his toy box and made a holy mess. Last night we heard all kinds of banging and moving around. We went to check on him and he had moved the toy box from his closet, across his room, out in the hall and to the top of the stairs. Where he shoved it down. The stairs. (it's a plastic toy box.)  Then he dragged it through the foyer and kitchen to the family room. Where he proceeded to put it back in the place it was over two years ago. And then he climbed up, reclined on the top of it, and closed his eyes.

That's when I remembered -- he used to climb up there with a blanket and camp out, sometimes falling asleep. And then I thought about it -- he's been trying to move that toy box for months. Maybe since I put it upstairs. And last night he finally discovered that if he took all of the toys out of it that it would be lighter and he could move it. That's my boy.

I know those wheels are always turning. I know he is in there somewhere, even though sometimes I'm more focused on keeping the routine, instead of on him. This boy has smahts. He is always plotting and planning. He is always listening and formulating plans in his head. I have to remember to presume intelligence, even if he has never been able to prove that he's as intelligent as anyone else. It dawned on me that this is why they refuse to diagnose him with MR, even though he is non-verbal. Even though he'll never pass (let alone complete) an IQ test. Even though he has the academics of a three-year-old. His brain is eight. Heck, his brain might be fifteen. He's in there.

So, people of the world, don't feel sorry for me. Don't feel sorry for him. He doesn't need your pity. He needs your respect. He needs to be treated like everyone else. He needs to have the same opportunities. He needs you to see him for who he is, not what he can do. I'm telling you, someday this kid is going to do something amazing. Phenomenal even. He'll show everyone. Because he's a perfect ten to me.

Except this one goes to eleven.

Friday, December 10, 2010

After the Thunderstorm

J. Lorraine Martin
www.cheeselesspizza.blogspot.com

I was sitting in a lawn chair in my garage with the door open. A thunderstorm was in progress.  My tears synchronized with the outpouring. I don’t usually take the time to really feel and watch a storm, but on this day I was drawn to the outside, perhaps seeking a powerful physical stirring to match the emotional stirring that had just occurred.

Earlier, mulling around the kitchen, I reviewed the details of our planned social outing with each of my kids. My initial goal was to gently stretch my autistic son outside his comfort zone by having my daughter invite one of her friends to join us to go bowling; however, it soon hit me that allowing new people a full view into our life brings to the surface feelings of vulnerability that we all would prefer to avoid.  In fact, the mother of our invited friend had to ease my own self consciousness by assuring me her daughter would love to help us. I then in turn assured my surprised daughter of her friend’s openness. My youngest at first said he had no interest in going; he often craves a break from autism.  However, at the last minute, he changed his mind.

Naturally our fears and reticence pale in comparison to the obstacles my autistic son must face. When a new person comes to our house, he usually insists on retreating in some way. I’ve tried to hire new people to come “play” with him, and he often hides in a closet, only able to talk through the door. One time cherished relatives came to visit, and he could only fleetingly look at them before hiding in his bedroom during the duration of their stay. Sometimes, even with the most loved and trusted of therapists, he has insisted on turning off all the lights in a dark, windowless basement room before he can interact with them. I theorize he tries to close down one sensory system, like vision, in order to manage his bombarding and overwhelming emotions and sensations to life.

With a lot of talking, planning and anticipating, my son chose bowling over a home play date. He actually seemed excited until he comprehended a detail about the outing that he had missed in earlier discussions.

“I thought she was meeting us at the bowling alley. I can’t ride in the car with her."

Through a process that was nearly impossible years ago, my son can now talk through his fears without simply yelling that he can’t do it.

He lamented: “She might cough.”

Readers take note:  my son would like you and the rest of the world to not cough, ever.  He finds the surprise sound startling. He has run out of many a restaurant, movie theater, and school room in a panic over this rule being broken.

We discussed the fact that people may cough.  He decided that if he told her to warn him first, he could handle the cough sound better. He calmed and said he could ride in the car with her.
  
The outing became not just about him, but us all. His reactions to life may fall outside society’s normal definitions, but in a way he seems to be conveying in bold extremeness what is true for most: the need to navigate the unknowns of life with some sense of control. Going out in public with my oldest son is a venture into unpredictable territory to say the least. However, with the repeated hammering of experience, I’ve come to conclude most of my ideas around the concept of control have been illusory; true control lies in the choice I make once life presents its various manifestations.

My other children had been prepped that our goal was not about some prescribed outcome that must meet certain requirements to be deemed successful else we stamp it with failure. Mind you, I didn’t come to this way of thinking without a lot of hard knocks. In the past I would have said: Oh no he cried! Oh no he yelled! Oh no he’s different! Oh no how will this affect his siblings? Oh no no no! We have failed! Thankfully life brought me wise and insightful teachers, coupled with organic experiences, to help me re-frame my defeatist thinking.

We prepared for him not talking at all, or talking too much, or getting anxious, or saying something embarrassing, or even for a potential meltdown. We prepared that our guest was simply learning about autism, so no matter how the day played out, she would learn. In this way of thinking success had already been achieved by the simple act of taking our first step out that door.

Our friend entered the car.  My son surprised me by gregariously talking. Sometimes he talked appropriately. “Do you have classes with my sister?” Sometimes he went to a script barely listening to her replies as he moved from one self-interested and random statement to the next. “Have you ever listened to Moby? I love the crazy you tube video with Ronald McDonald! I hate the Montel Williams Money Mutual commercial!” Everyone rolled with it, and I felt a sense of acceptance once hard to find from others; if I’m entirely truthful, my own acceptance and peace was a hard-fought-for triumph.       
We drove along, all of us attempting to foster conversation. He at one point rolled the window down and hung his head outside of it, removing himself from interaction. I understood this gesture.

“Why don’t you tell our guest what you are worried about?"

“No, I don’t want to.”  His curls were getting matted to his head as he continued to hang his head out the window. The siblings complained over the stifling heat.

“Does it feel hard to tell her?”

“Yes.”

“Would you like me to tell her?”

“Yes.”

I shared his coughing fear with our guest.  She said she understood and would warn him if needed.  She exuded compassion, and I was thankful for her presence.

He rolled up the window and rejoined us.

We arrived at our destination and began to bowl. We’ve bowled with a few special needs groups over the years; the bigger sounds of background music and balls hitting pins somehow muffle the smaller, uncontrollable sounds like coughing, so it’s a place that has always brought relative safety to him. Although, our history isn’t perfect here; in the past he often had to walk away when it wasn’t his turn as sometimes the waiting in close proximity to others proved too daunting. I’ve even stood outside with him pacing in freezing weather to give him the distance from others he craved.

On this day he was able to wait his turn and sit with us.

I came to realize it was my younger son who struggled a bit more with this outing. Not only was he in last place but he saw someone he recognized from school. I suspected memories of difficult public moments with his brother were also running through his mind.

 “Mom! This is so embarrassing! Those tube socks you both are wearing are hideous, and your tie die shirt is awful!"

I was overjoyed that his biggest expressed fear was our nerdy look! I felt ever so normal! He focused, moved up in his ranking, and seemed genuinely happy.  He and his sister confidently fostered interactions with their brother and our guest. I celebrated all the progress before my eyes. 

After dropping our guest back at her house, my son and I reflected.

“I had so much fun today.” And then three, unimaginable words followed from him: “I felt normal."

In the fifteen years of raising my son and being kicked out of numerous school programs and often looked at as if we were rare oddities, "feeling normal" has always been outside our realm of experience. It was only a few weeks ago that I dropped him off at a new summer camp, and he resembled a frightened preschooler, asking me to stay close by, self isolating, heartrendingly trapped in fear that has always gripped and stifled his experiences.
    
I burst into tears and hugged him. Years ago he could only receive a hug in a stilted way. He now received it tenderly.

“Why are you crying Mom?”

“Because I’m happy for you that today went so well!” Many times he has asked me how I can cry when happy, and it’s a concept that has been hard for him to understand. As he looked at me and smiled, I couldn’t help but wonder if together we had chipped away ever so slightly at his lack of understanding.

His sister walked in, and I explained my tears through stuttered words.

She asked her brother:  “What do you mean by feeling normal?”

“I felt like you."

My daughter commended her brother in his progress; she then hugged me and thanked me for making the outing happen. Then my youngest walked in and saw me crying and grew sensitively alerted, as he always does. I shared that my tears came from joy; he hugged me the deepest.  I thanked them both for being willing to take the risk of facing their own fears in order to help their brother.  

And that is when the sounds of a storm tugged at my overwhelming emotions. How often have I ignored such natural occurrences, yet on this day I was drawn?

Sitting in a chair tucked back several feet from the downpour, tears of joy and mystery commenced from a deep well of remembered pain. Why had autism receded in such a way today as to make my son not only feel normal but have the self awareness to declare it? What had brought my son out from his regression a year ago when he hid in forts under tables at school, raging and panicking across a wide array of settings, to a boy who went bowling just like any other teen? I did not have answers as to why his storm of autism on this day experienced a temporary quell, giving us the profound words:  “I felt normal.” From the dark and often hopeless places we have been together, I cannot imagine words that could feel more powerful and meaningful, imparting the clear and inspiring message: continue to hope, continue to try.
     
Suddenly, a gusty wind gathered force, whirring and sweeping across my skin.  Soon I was bathed in a misty wave of rain, so surprising that my entire body braced, hands clung to the arm rest, face thrust back, resting and cradling on my left shoulder. My lungs drew in, exasperatingly holding the breath for an extended moment, and then released a drawn out “ahhhhhhh…” It was a rush of power and physical sensation that matched the overwhelming swell of my emotions.
 
At bedtime,  we reflected some more.

“You’ve had so many hard times. I’m glad today felt so good for you.”

And I was blown away again when he said:  “I felt like someone else today.”

Wednesday, December 8, 2010

Autism and Holidays: Success Through Meticulous Planning

Shannon Des Roches Rosa
www.squidalicious.com

As the 2008 holiday season sputtered out and the last relatives left our house, I exhaled, then smiled. I'd really enjoyed all the feasting and fun, from the morning moment the kids' cousins started frolicking underfoot, until the last precious late-night conversation wound down. But there is no way in hell we can manage another holiday season like that one, because floundering in all the happy happy joy joy was one miserable, disoriented, sleep-disturbed little boy with autism and his equally disoriented parents. Please, learn from our mistakes and successes so that your holiday season can be as enjoyable as ours was but suck less than ours did.

Your advocacy skills need to go into overdrive during the holidays. Of course you need to advocate for your child, to ensure they're accommodated -- but you also need to advocate for yourself. Your children are sensitive to your moods, so think about how you can minimize your own inevitable holiday stress and not amplify that of your child. Ask relatives to help out, and show them how to do it. Make your trip shorter, split up your family's travels, or just stay home. Get a hotel room and make it your child's safe space. Bring familiar toys, activities, and comfort items to occupy your child even for the briefest of moments, so you can take an occasional deep breath.

Here is what not to do: have a house full of guests stay with you for more than a week while your son is on a disturbed sleep jag and gets up every morning between 3 and 5 AM, and never ask any of your guests to spell you even though they have the option to take naps during the day and you and your spouse do not. I never asked anyone for help with Leo's early waking last year; he was in a particularly violent phase and I didn't want him to hurt anyone. This might have made sense for my 5' 2" mother, but not for my athletic 5' 11" brother. Instead of asking my amiable sibling to occasionally get up with Leo, I grumbled under my breath as that brother played Rock Band until 3 AM every night. Not asking was not very smart of me. Had I arranged for even a little bit of help, it might not have taken me two months to emerge from the post-traumatic holiday blues.

One thing we did right was give ourselves permission to make the holidays work for all three of our children. My husband's parents were not able to travel during one Thanksgiving yet really wanted to see their grandchildren, so my husband and I agreed that he would travel with the girls, while Leo and I stayed home and ate a sub-continental Indian Thanksgiving dinner with friends (Leo loves "naan bread"). We didn't think it was fair for the girls to miss seeing their grandparents because Leo wasn't able to travel, and it was absolutely not fair to subject Leo to the terrors of traveling for his sisters' sake.

Leo's in a better space now. He's less agitated, and his sleep cycle has normalized. Last year we had success staying with his grandparents for a short Christmas visit, after which Leo and I returned home, and his sisters dad stayed a bit longer. We're going to stretch the holidays even longer this winter with an Arizona road trip. But we remain aware that travel might make Leo implode, and are open to one of us taking our boy on the next plane straight back home, if that's what he needs.

The value of planning cannot be overestimated for kids with sensory sensitivities, who thrive on routine, or who are easily disoriented. Here's some holiday planning advice from experienced parents of kids with autism:

Laura Shumaker outlines eight tips to help you survive the holidays, specifically:
Take two cars to holiday parties when the whole family is invited. You get the picture.
Karen Plumley recommends talking to kids about their routine and the way it will be affected by the holidays:
Kids with special needs are often anxious about changes in their daily routines. Unexpected surprises will not necessarily be met with enthusiasm. Preparing children with autism or anxiety disorders ahead of time for the holiday trip will benefit them greatly. Talk about the trip’s daily itinerary, places the family will visit, and what the hotel and food will be like.
Squidoo advises setting aside a safe space for your child to retreat to if their sensory barriers are breached:
Everybody gathering at your house for dinner? Then make your child's room off-limits to everybody but him/her. Encourage your child to use their room as a refuge when things get overwhelming.
Aliki McElreath wants parents to remember that there is a lot of extra, overwhelming noise around during the holidays:
Holidays are noisy. There is no way around this. Most kids are able to process out the noise, or to use instinctive coping skills to deal with extra sounds and activity. [...] ...a child with an autism spectrum disorder cannot process the excess volume, and to him the sounds become inseparable -- a cacophony of senseless noises that are actually physically painful, even if he doesn't react in classic ways to perceptions of pain. If you see your child become over-hyped ... or upset, take the time to help him find a quieter place, even if he resists this. Even a short time away from all the sounds can make a huge difference.
It is critical to be sensitive to your child's needs during the holidays, and give them space to self-regulate. If your child has coping behaviors that your family finds odd but aren't actually inappropriate, then your family will need some educating. Humor can help. Here's something I wrote four years ago, to help our families understand some of Leo's stims:
Let Me Stim, Let Me Stim, Let Me Stim
(To the tune of "Let it Snow, Let it Snow, Let it Snow")

Oh, the holidays are coming
And that means that I'll be bumming
Unless you can go out on a limb, and
Let me stim, let me stim, let me stim

It's my favorite way of coping
And it calms me so I'm hoping
You won't feel the need to look grim, just
Let me stim, let me stim, let me stim

When it's finally time for bed
Please don't make me give up my green straw
Or I might never go to sleep
And all of your nerves will be raw

I'm not hurting anybody
Though to you I might look nutty
Don't you folks have a tree to trim??
Let me stim, let me stim, let me stim!
I don't know if it's possible for families of children with special needs to eliminate holiday stress altogether, especially for kids on winter breaks whose routine is disrupted, and who as a result need to lean more heavily on their parents or caregivers. But we need to jettison the idea of hoping for the best -- instead, we need to plan meticulously for the reasonable.

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A version of this essay appeared at BlogHer.com.

Tuesday, December 7, 2010

A Sweet Way to Raise Funds for Autism Research

Here at the Thinking Person's Guide to Autism, we're about (a) having fun with our families (b) evidence-based approaches to autism (d) innovative fund-raising and (c) social media. So naturally we are participating in The Autism Science Foundation's campaign, Recipe4Hope.

There are a lot of needs in the autism community, but we believe that funding sound autism research comes high on the list. So won't you join us? Every dollar donated to the Autism Science Foundation from now through December 31 will go directly autism research.

This video (1 min 13 seconds) explains the campaign.



For those of you who aren't familiar with the Autism Science Foundation, here's a short statement of its goals:
The Autism Science Foundation funds scientific research to find the causes of autism and to develop treatments that will make a difference in the lives of children, teens and adults. This holiday season, outstanding research is the greatest gift we can offer our families.
You can also read Shannon Rosa's BlogHer interview with ASF president Alison Singer for more about ASF and its goals.

You can help the Recipe4Hope campaign by:
You can make an online, cash donation today through the secure dedicated CharityWeb site, https://ssl.charityweb.net/autismsciencefoundation/Recipe4Hope.htm (The form on the site will give you options about donor recognition and making a donation in honor of someone else. Some families have taken up giving charitable gifts in the recipient's honor, instead of exchanging tangible gifts.)

If you would like to send a check or another form of contribution (such as a gift of appreciated securities) see this page or contact the Autism Science Foundation