by Lisa Snyder

Aspergers Syndrome is... A neurological (brain-based) condition first formally identified by Austrian Hans Asperger in 1944; research lost in post-European war fallout Also researched by Leo Kanner in 1943; ideas overrun by Freudian ideas of nature over nurture, refrigerator mom theory British doctor Lorna Wing connected the two in 1981, but primarily adapted Aspergers definition Officially part of DSM in 1994 Part of the Pervasive Developmental Disorder category (PDD); it is a developmental disability A spectrum disorder – think rainbow

Aspergers Syndrome is... A mild form of Autism; sometimes (controversially) used interchangeably with High Functioning Autism (HFA) Sometimes confused with Nonverbal Learning Disorder (NLD) and Central Auditory Processing Disorder (CAPD) (also can be comorbid with these conditions) Even confused with ADHD (as per the DSM, all ADHD symptoms can be attributed to Aspergers); some children are diagnosed ADHD prior to being re- diagnosed as Aspergers Becoming more common and more studied; as such federal funding has increased by over 80% since 2001

Who Has Aspergers? Even more children have Aspergers than have Downs Syndrome (5 times as common) 3 times more common than juvenile diabetes Estimates range from 1:132 to 1:150 of children 10 and under have an Autistic Spectrum Disorder Some areas of the country have a higher ratio of Aspergers than others Most commonly, boys (over 4:1) – possibly as high as 1 in 94 have a Spectrum Disorder Confirmed: Dan Akroyd, Temple Grandin Theoried: Bill Gates, Einstein, Newton, Jefferson, Jane Austen, Socrates, Michelangelo

What Causes Aspergers? Origin thought to be genetic (potentially related to depression and/or bi-polar disorder) Silicon Valley connection not proven Controversial debate regarding MMR immunizations as cause of Aspergers Syndrome

Today's Agenda Characteristics of Asperger's Syndrome Examples illustrating the range (spectrum) of Asperger's Syndrome Ideas on how to facilitate students with Asperger's Syndrome and work with their families

Characteristics Still being studied, researched, clarified, revised, and debated Focus today: Physical traits Communication skill deficits Sensory Integration Dysfunction (SID) Social skills deficits Personality quirks

Physical Traits New research suggests that a disproportionately large head is likely to be present in Aspergers cases Brain is anatomically different and immature; it provides slow processing time and does not parse information as a typical brain would Delayed motor development Physically clumsy Awkward gait Atypical mannerisms Weak upper-body strength Low endurance level Poor handwriting

Communication Skill Deficits Misunderstanding of tone of voice and body language (65% of typical meaning is through non- verbal cues) Unusual speech patterns, odd prosidy High pitched or flat intonations Lack of slang or kid-speak Lack of eye contact Very literal – confused with double meanings, idioms, sarcasm Lack of generalization in learning – every situation is new

Sensory Integration Dysfunction The inability of the brain to correctly process information brought in by the senses Hyper or hypo sensitive to light, sound, crowds and other external stimulation (can switch back and forth!) Some SID kids crave certain stimulation but not others Some level of fine and gross motor difficulty (poor handwriting, coordination, motor planning) Vestibular (balance) issues; clumsiness Stiffness in muscles, tires easily A syndrome in and of itself

Social Skills Deficits Immature At risk for being bullied and ostracized Sometimes seen as being bad kids (usually due to fight or flight nature of their reactions) Inability to decipher social cues Inappropriate responses socially and emotionally Lack of emotional reciprocity/empathy Difficulty making and keeping (age appropriate) friends Superficial nature of relationships common At risk for anxiety and depression in secondary school as a result of these deficits

Personality Quirks Solipsism – or the philosophy that only the self exists Appear to be in their own world A desire for structure and routine Prefer activities that require relatively little verbal interaction Over-reaction to things neurotypicals wouldn't be bothered by (being bumped in the hall, not finishing work) Typically unable to lie Tendency to see things as black or white More rote knowledge than applicable meaning

Personality Quirks, continued… Rules oriented Repetitive behaviors and ritualized activities (perseveration); echolalia One or a limited few passionate interests Getting stuck Can shut down if overwhelmed Prefer sameness, dislike changes to routine Lack common sense

Real Life Examples of the Autistic Spectrum Nick Snyder (SID/mild Aspergers) Jake (SID/Aspergers) Bobby (autistic savant) Cole (autistic) Zack (autistic comorbid with MR)

Ideas on Facilitating Students with Asperger's

Academically… Positive attitude Learn about the learner from the Learner (Kluth, 2005); survey likes and dislikes, needs and strengths Instruct in classroom patterns, rules, and classroom and self organization Figure out what they don't know; instruct student in systematic systems for achievement, patterns Take advantage of special interests Consider using learning centers, Readers Theatre, reciprocal teaching and re-tells Define words and phrases explicitly and thoroughly

Academically, continued… Use visually explicit graphics and organizers for comprehension Provide written instructions – on the board, handouts Explicit, step-by-step instructions, small chunks (specific, not abstract) Recognize time is an issue; allow longer processing time and use visual timers and clocks Give choices, different ways to confirm learning Prompt for transitions so that the student can disengage comfortably

Socially… Build rapport, they need approval Include the student in classroom discussions Assign classroom jobs (ownership) Utilize peer modelling, mentoring Social skills practice, instruction and support (Social Cues Questionnaire, cause-effect tool) Use student-directed social stories or silent video interpretation Assign groups, dont let students choose – but be flexible Be consistent

Behaviorally (preventive)… Prepare yourself and your student for changes and transitions Diminish sensory input (especially visual and auditory) Visual schedules, point charts, rewards, and visual lists and reminders, visual and verbal prompts Provide fidget supports (similar to ADHD needs) and physical breaks Teach self-monitoring -- How's your engine running? Help identify what being out of control feels and looks like – then give them the tools to correct it Provide an out

Behaviorally (reactive)… Avoid power struggles, be empathetic Remain calm and comforting Quiet voice, beware of touch Dont insist on eye contact Avoid angry tone or body language Aim for privacy Refrain from punishments at this time Continue to provide an out Remind student of positive behavior supports

Working with the Family Emphasize team aspect of education Recognize the 24/7 nature of Aspergers Syndrome Success might be hard for parents to grasp Symptoms change and develop over time but the condition does not go away Provide resources and support for families; often they feel misunderstood as well

Summary Utilize peer support Don't take it personally Keep track of triggers Remember visual works best Prepare for changes in advance Have empathy Theres no typical. No portrait to paint. No two who are alike. Like snowflakes, they resemble, yet remain unique. Therein lies the challenge For parents, patients and physicians. Author Unknown

Welcome to Holland c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Written Resources... A Parents Guide to Asperger Syndrome & High Functioning Autism by Drs. Sally Ozonoff, Geraldine Dawson, and James McPartland A Thorn in my Pocket by Eustacia Cutler All Cats Have Asperger Syndrome by Kathy Hoopmann All Kinds Of Minds by Dr. Mel Levine Asperger Syndrome: What Teachers Need to Know by Matt Winter Blue Bottle Mystery (from the Asperger Adventure Mystery series) by Kathy Hoopmann Can I Tell You About Asperger Syndrome? by Jude Welton Helping a Child with Nonverbal Learning Disorder or Asperger's Syndrome: A Parents Guide by Kathryn Stewart How To Talk So Kids Can Learn by Adele Faber and Elaine Mazlish Quirky Kids: Understanding and Helping Your Child who Doesnt Fit In – When to Worry and When Not to Worry by Perri Klass, MD and Eileen Costello, MD Raising NLD Superstars: What Families with Nonverbal Learning Disabilities Need To Know About Nurturing Confident, Competent Kids by Marcia Brown Rubenstein The Autism Acceptance Book: Being a Friend to Someone With Autism by Ellen Sabin The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz Thinking in Pictures by Temple Grandin This is Asperger Syndrome by Elisa Gagnon and Brenda Smith Myles

Online Resources... Asperger Syndrome Coalition of the US (ASC-US) Asperger Syndrome Education Network (ASPEN) Assistive Technology for Children with Autism Autism Society of America Autism4Teachers Dan Coulter (parent of Aspergers child) do2Learn site ( My Precious Kid Child Safety Products safety.htmlhttp:// safety.html National Autism Association Online Asperger Information and Support (OASIS) Specifically, Secrets of Autism Tin Strips: A Special Education Resource Tony Attwood