More Than Just Coping: Empowerment Strategies for Parents

Jeremy Sicile-Kira - then

Jeremy Sicile-Kira – then

Yesterday I presented at IEP Day (Involved Exceptional Parents’ Day Conference) in San Diego. I  promised to post some information here for participants, so they could easily access some links to free information. Feel free to pass this to other parents who need the information.

As a parent of a newly diagnosed child with special needs, it is not always easy. As we discussed yesterday, you may be feeling very emotional and upset, and that is normal. Remember, you are not alone. Many parents have been there before, and joining support groups with parents can be very helpful. You can share information.

Remember, you may be eligible for services and sometimes things go smoothly, sometimes they do not, and every school district is different. You will have to learn to be an advocate for your child. Knowing your rights is important. You will get services based on facts, not emotions.

In each state, there is information available for free to help you know your rights and responsibilities as a parent of a child with a disability, or a person with a disability. In some states it is called Protection and Advocacy; in California it is Disability Rights California   http://www.disabilityrightsca.org.

There is a lot of information on that website, and great publications you can read on different rights and responsibilities you have. For example, If you want information as a parent of a child who receives special education services, click on “Publications and Resources” at the top http://www.disabilityrightsca.org/pubs/PublicationsIndex.htm.   You can see the list of publications that explain in simple language what the laws mean. If English is not your native language, you can click on the language you want to read the document in (Spanish, Korean, etc). You want to read “The Special Education Rights and Responsibilities (SERR) in regards to special education.

Here is a series of blogposts I wrote specifically for parents of newly diagnosed children. This information is from my newly revised book, Autism Spectrum Disorder (2014). Although the book is specifically geared towards autism, the advice in the blogposts below is true for any new parent of a special needs child, especially # 1 and # 4.

1.  Advice for Parents of Newly Diagnosed Children with Autism http://www.psychologytoday.com/blog/the-autism-advocate/201402/advice-parents-newly-diagnosed-children-autism

2.  New to Autism? Where to Go for Information http://www.psychologytoday.com/blog/the-autism-advocate/201402/new-autism-where-go-information

3.  Newly Diagnosed Child With Autism? First Steps for Parents http://www.psychologytoday.com/blog/the-autism-advocate/201402/newly-diagnosed-child-autism-first-steps-parents

4.   Parents New to Autism: More First Steps to Take http://www.psychologytoday.com/blog/the-autism-advocate/201402/parents-new-autism-more-first-steps-take

You may also wish to sign up to receive free occasional newsletters from my website  AutismCollege.com – scroll down the home page.

If you want to see my son Jeremy’s commencement speech to hear his words, you will find it here: Autism: Transition to Adulthood: Jeremy Sicile-Kira’s High School Commencement Speech.

Even if your child cannot speak, it does not mean he or she does not understand. Speak in whatever language you are comfortable in. Research shows that hearing two languages does not impede understanding. Just be consistent in using the same language.

Remember: your child is different – but not less! Tell your child everyday that you love him or her. Read to your child, sing to your child. You are connecting with your child, and that is the most important ‘therapy’ in the world. Over time you will see that you are learning as much from him or her as your child is learning from you. never give up on your child!

Jeremy Sicile-Kira - now

Jeremy Sicile-Kira – now

People Creating Options: The Julie + Michael Tracy Family Foundation and Urban Autism Solutions

Be the change that you wish to see in the world – Mahatma Gandhi

Here at Autism College  we enjoy highlighting   people that  are working towards creating opportunities for those with autism. Here is a guest blog written by Michael Tracy, co-founder of the Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions.  JMTF and Urban Solutions  exists to help address challenges  in regards to employment and housing that our young adults with autism face.

Julie and Michael Tracy

Julie and Michael Tracy

Julie and I are the parents of two sons, Joseph, 23, and John, 21. While Joe developed typically, John was diagnosed with Pervasive Developmental Disorder (Autism) in preschool. We tried hard to mainstream him, but John struggled socially. No amount of soccer or Boy Scouts or 4H seemed to help. It tore out hearts out to see him so isolated. In middle school, John developed schizoaffective disorder. By the time he reached his sophomore year in high school he had been hospitalized at least three times and we could see that a big change was needed.

In his sophomore year in high school, John was enrolled in the Sonia Shankman Orthogenic School, a residential, therapeutic school associated with the University of Chicago. In the spring of 2011 he had his most serious psychotic break and was hospitalized for five weeks at Rush Hospital on the Near West Side of Chicago. It was a pretty intense experience for John and our family. While Julie and I were very impressed with the care John was given at Rush, we learned of the need for more specific psychiatric and transitional care directed towards young adults with autism and comorbid mental health problems.

After John was released and back at the “O” School, we founded the Julie + Michael Tracy Family Foundation and Urban Autism Solutions to help address challenges facing young adults with autism. Learning that the vast majority of this population lives at home with their parents and often don’t hold jobs and/or have meaningful lives outside the home, we set out to work with Rush University Medical Center to establish the Autism Assessment Research and Treatment Service Center (AARTS) with the goal of working with young adults on the Spectrum to achieve better outcomes.

Urban Autism Solutions is currently the only organization dedicated to providing wrap around solutions and a path to a fully integrated community life. We plan to create a series of residences for young adults with autism on the near West Side of Chicago. We just purchased our first residence that will house three young adults with autism. The building is in close proximity to Rush, allowing easy access to the Rush AARTS Center. With public transportation, the city is a much more livable place for those like John who will probably never drive. The neighborhood is conducive to walking, as is close not only to Rush but also to the University of Illinois at Chicago, the restaurant district surrounding Taylor Street in Little Italy and the West Loop neighborhood to the north. In the midst of so many businesses and in the shadow of the downtown, we know there may be more opportunities for meaningful employment for John. Finally, an urban setting, due to its diverse populations, might allow for “quirky” young men to “fit in” better.

Another initiative of our foundation is to develop social enterprise businesses to provide vocational opportunities for young adults with autism, as well as returning vets and others who need workforce development. This past summer, we launched a pilot community vocational garden, housed in the Illinois Medical District, just west of Rush. Our goal was to learn about urban gardening, health and nutrition and to create a viable path to greater economic independence for this vulnerable population. In addition to harvesting an abundance of produce, all indications of our initial research and assessment of the first year success of this pilot program are very positive. We are busy planning a major expansion for Year Two and we are exploring selling our produce to an  institutional partner and at a local farmer’s market.

The long-term goal of the JMTF and Urban Autism Solutions is to provide a safe and supported passage to a fully integrated community life. Through our initiatives of residential housing, groundbreaking research, vocational opportunities and an alliance with the Rush AARTS Center, we know we are creating viable opportunities and solutions for young adults and families with autism. To find out more about our foundation, go to www.jmtf.org.

 

 

Need Information re Teens with Autism? Autism College course beginning Tuesday August 28

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how and when to explain puberty to your growing child? Are you at a loss about what to explain about the birds and the bees? Are you wondering what an ITP is and how to best prepare your child or student for adult life? Then the course Adolescents on the Autism Spectrum is for you.

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this interactive course will be taught on-line to a small group on Tuesday August 28, Wednesday August 29, Thursday August 30; from 6:00 pm to 8:00 pm PST (9:00-11:00 EST) for a fee. To sign up, go here.  Instructions will be sent to you within 24 hours of sign up.

The cost for the  6 hour- course over three days is  $99.00 and provides:

  • 6 hours of training
  • PowerPoints provided before the webinars to help with note taking.
  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • BONUS: Written transcript booklet from the original live course  provided in March will be provided to those who sign up (a $39.00 value – see description in the Autism College store)
  • BONUS: Opportunity to watch replay of webinar at a later date (convenient if you miss a session).

Topics to be covered during the 6 hours include:

Adolescence 101: The Teen Basics :Everything you need to know (but don’t know who to ask)

  • 13 things every parent or educator needs to know
  • The general challenges faced by ASD teenagers
  • Sensory processing challenges in adolescence
  • Functional strategies to help with daily transitions
  • Family and sibling concerns
  • Teaching about puberty
  • Hygiene and self-care
  • Masturbation

Adolescence 102: Relationships: It’s Complicated

  • The notion of privacy and consent
  • Relationship boundaries
  • Sexuality
  • Self awareness
  • Self- regulation
  • Bullying
  • Interdependence

Adolescence 103: The Transition Years: Plan, Prepare, Practice for the Real World of Adult Life

  • Preparing the transition to High school
  • The ITP- Individual Transition Program and IEPs
  • Teaching life skills needed for work and / or college: self-esteem, self-advocacy, executive functioning, self-reliance
  • Building on strengths
  • The use of mentors

Sign up now to reserve your spot! Questions? Send us an email!

Praise for A Full Life with Autism

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

More Rave Reviews: A Full Life with Autism

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.

 

 

A Full Life with Autism: Comments by Dr. Cathy Pratt

Unfortunately, many adults on the autism experience high rates of unemployment or underemployment.  Some of our most gifted live in poverty and have few options in life.   Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family.   This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood.   I highly recommend this for any family or individual as they  prepare for transition planning.

 

Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America

Johnny Depp and My 2012 Goals

Someone I met recently commented that they noticed I had not posted a blog here since May 2011.  I can’t believe it’s been that long but  I’ve been busy co-authoring a book (yes, another autism book!).

But I’m back here today – because I woke up this morning from a really weird dream brought on by my daytime worries.  Even if the dream involved Johnny Depp (more on the dream, later),  obviously I am overwhelmed and stressed  – probably like many of you reading this. And I wanted to share something I hope will be helpful.

After I woke up from my dream (and got over the initial excitement of having visited with Johnny Depp while still in my own bed) I decided enough was enough, and that I had to start walking the talk I give autism parents about taking care of themselves.

So I decided to follow the advice of  Chris Brogan. I received an email describing how in the last few years Chris has skipped the tradition of creating New Year’s Resolutions (soon forgotten) and instead he  creates  three words that describe what he wants to focus on for the coming year.  I thought that was a great idea and could help my stress level.

Here are my three words: (none of which are Johnny or Depp):

Produce:  I have great ideas, and I follow through when there are clear-cut deadlines ( for a publisher or a speaking engagement), but my own professional projects (AutismCollege.com)  and  personal ones (exercise,  develop my personal relationships, mentor my autistic son Jeremy in reaching his life goals) don’t get completed in a timely fashion.  So this year, I will produce the projects I have identified as crucial and dear to my heart. Which takes me to my second word…

Flow: In order to have more time to produce, I need to eliminate distractions and clutter in all areas of my life. I’m interested in so many things and I easily get distracted so I am learning to have blinders like a racing horse does and focus on the finish line. Horses can still sense what they may not necessarily see, and I hope I have the same instincts when necessary.

Collaborate: Often I am so busy with outside deadlines that I don’t make the effort to spend time with people who I could effectively partner with to reach mutually beneficial professional and personal goals.  This year, I will focus on collaborating with like-minded people who have similar goals.

Hopefully, what I’ve shared is helpful to you. However, I know most of you just want to hear about my dream involving Johnny Depp (rated PG). So here it is:

I dreamt I was visiting my daughter, Rebecca, who was staying with a musician friend, helping him break into the music business. (Rebecca is a volunteer DJ at the UC Davis radio station).  Johnny Depp was staying there as well (big surprise!). While I’m there Johnny asks Rebecca to help him with the computer to hear an on-line training course that is discussing streams of income and sales funnels and handling your wealth.  I am nervous meeting Johnny, so I try to make conversation  about how Rebecca could use information  like that because she is having such a tough time finding a part time job (reality) while at college, and could use money, and as I continue talking I realize that I sound like I am asking Johnny Depp for money and for a job for Rebecca, which I am not. I’m just having a bad case of  foot in- mouth disease.  I feel really stupid. Only my daughter was more embarrassed than I was.  We climb into a small boat to reach the small stage where Rebecca’s musician friend is playing, and getting out of the boat I splash my husband’s best friend from New Jersey, and his wife and practically drown them. Embarrassment after embarrassment. You know the feeling.

That’s my dream. So this morning I woke up, wrote PRODUCE, FLOW, COLLABORATE on a piece of paper and put it on the dining room table (center of the house) and every time I do something now I ask if it fits in with my goals. I’ll keep you posted on how my three words work out.

What are you focusing on this year?

If you are still reading this far and you know Johnny Depp, tell him I’m not asking for money, but if he needs info on autism, tell him to check out my books and websites, and to call me if he has time for lunch. We could collaborate on something. Hopefully, his good looks won’t be too much of a distraction.

Best wishes  to you and your family for 2012!

Preparing Your Teen or Young Adult for Work in the Real World

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“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money. These last two ideas are very important to Jeremy.”

The above was part of information given to us by one of Jerey’s favorite teachers during an Individualized Education Program (IEP) meeting a few years back.

Jeremy is older now, but like all parents my husband and I worry about what his future will look like. Jeremy is now 22 years old, and with the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student on the spectrum, there are a few aspects that need to be focused on: the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available. In this post, I’ll be discussing necessary life skills and what employers look for.

Necessary Life Skills

In my book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether at work, at school, at home, or in the community. Some of the skills such as self-regulation, independence, social relationships, and self-advocacy are important for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job is really a culmination of all the life skills hopefully learned during the school -age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, he must be able to control his emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to a colleague is important to know in most work situations. Self advocacy skills are necessary in order to request what you need to get the job done.

Life skills in general should be broken down and translated into IEP goals and objectives, especially during middle school, high school and transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often, when looking for a job placement for a person on the spectrum, people take the approach of asking for handout, or a favor. We need to approach this differently. I took a look at the top 10 skills and attributes most employers look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s the top ten of what employers look for: honesty and integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?” They are not the employees who will be caught with thier hands in the cash tills. That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend. Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service, they market the positive attributes, not the negatives. And that’s precisely what we need to be doing with any prospective employee on the spectrum.

In my next post, I’ll discuss the interests and strengths of the person on the spectrum, and the usefulness of mentors.

Autism College to present free live Q&A with author Tom Fields-Meyer

Autism College will present a free live Q & A on Monday, September 19, from 6:00 to 7:00pm PST with Tom Fields-Meyer, moderated by Chantal Sicile-Kira. Tom is the author of the recently published book: FOLLOWING EZRA: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son, moderated by Chantal Sicile-Kira. Sign up for this webinar at the bottom of this post. The publisher has generously agreed to send a free copy of the book to one of the Q & A participants, so send in a question and you may get more than just an answer!   

About the book, from the Following Ezra website:

When Tom Fields-Meyer’s son Ezra was a toddler and showing early signs of autism, a therapist suggested that the father allow himself time to mourn.

“For what?” he asked.

The answer: “For the child he didn’t turn out to be.”

That moment helped strengthen Tom’s resolve to do just the opposite: to celebrate the child Ezra was becoming, a singular boy with a fascinating and complex mind. Full of unexpected laughs, poignant moments and remarkable insights, Following Ezra is the riveting story of a father and son on a ten-year adventure, from Ezra’s diagnosis to the dawn of his adolescence. An engaging account of a father gradually uncovering layers of a puzzle, it rejoices in each new discovery and exults in the boy’s evolution from a remote toddler to an extraordinary young man, connected to the world in his own astounding ways.

Unlike other parenting memoirs, Following Ezra isn’t about a battle against a disease, nor is it a clinical account of searching for doctors, therapies or miracle diets. Instead, Fields-Meyer describes—with humor and tenderness—the wondrous, textured, and often surprising life one experiences in raising a unique child.

“This story will illuminate the experience of parenting a child with autism for those who don’t know it, and will resonate with those of us who know it all too well,” says novelist Cammie McGovern. “There are blessings along the way, and Tom Fields-Meyer depicts them beautifully.”

About the author, from  the  Following Ezra website:

Tom Fields-Meyer has been writing stories for popular audiences for nearly three decades, specializing in telling meaningful and worthwhile narratives with humanity, humor and grace. In twelve years as senior writer at People, he produced scores human-interest pieces and profiles of newsmakers. He penned articles on some of the biggest crime stories of the day (from the O.J. Simpson trial to the murder of Matthew Shepherd), profiled prominent politicians and world leaders (Nancy Pelosi, Pope John  Paul II, Sen. Ted Kennedy), and demonstrated a pitch-perfect touch writing tales of ordinary people overcoming life’s challenges in inspiring and compelling ways.

Tom also lends his skills to help others to put their compelling personal narratives into words. He teamed up with the late Eva Brown, a popular speaker at The Simon Wiesenthal Center’s Museum of Tolerance, to write Brown’s memoir, If You Save One Life: A Survivor’s Memoir (2007). Wiesenthal executive director Rabbi Marvin Hier called the book “very significant and meaningful…an everlasting and important legacy…and a reminder to future generations that championing tolerance, justice and social change are everyone’s obligation.”

Tom collaborated with Noah Alper, founder Noah’s Bagels, the successful West Coast chain, on Alper’s memoir: Business Mensch: Timeless Wisdom for Today’s Entrepreneur (2009). Publisher’s Weekly said: “This earnest book shines with Alper’s conviction, business savvy and decency.”

In September 2011, NAL/Penguin Books will publish Tom’s memoir, Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. Full of tender moments and unexpected humor, the book tells the story of a father and son on a ten-year journey from Ezra’s diagnosis to the dawn of his adolescence. It celebrates Ezra’s evolution from a remote toddler to an extraordinary young man, connected in his own remarkable ways to the world around him.

Tom previously worked as a news reporter and feature writer for the Dallas Morning News, where he covered the kinds of stories that happen only in Texas (shootouts in Country-Western dance halls, culture pieces on the State Fair) and once was dispatched to Nevada to investigate a road designated by AAA as “America’s loneliest highway.” As a senior editor at the Chronicle of Higher Education, he traveled the nation’s campuses and once convinced his editor to send him on a 10-day junket aboard a schooner in the Bahamas (an assignment he came to regret, not just because of seasickness). Tom’s writing has appeared in dozens of publications, including The New York Times Magazine, The Wall Street Journal, the Los Angeles Times and Esquire.

A graduate of Harvard University, Tom lives in Los Angeles with his wife, Rabbi Shawn Fields-Meyer, and their three sons.

To sign up for the webinar, please signup for our newsletter here. Already signed up for the newsletter? Click here

 

What is sensory processing disorder, and how is it related to autism?

Although a sensory processing disorder is not considered a qualifying characteristic for a diagnosis of autism, I have yet to meet a  person on the autism spectrum who does not have a challenge in this area. In interviewing adults and teenagers of different ability levels for my book, Autism Life Skills (Penguin 2008), most of them stated sensory processing challenges as the number one difficulty for them, regardless of where they were on the spectrum.

Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by  people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion.

For those interested in knowing more about auditory processing, Autism College will present a free live Q & A on the topic on Tuesday, July 19, 2011 from 6:00 to 8:00pm  PST with visiting professor Terrie Silverman, MS, and with Chantal Sicile-Kira moderating. You may sign up here.

Sensory processingmaking sense of the world – is what most adults conveyed to me as the most frustrating area they struggled  with as children, and this impacted every aspect of their lives – relationships, communication, self-awareness, safety and so on.  Babies and toddlers learn about the new world around them  by using their senses. At first they put everything in their mouths, they grab your finger with their little fists, then they start using their eyes to look at all those cute baby mobiles hanging over the crib. They learn to recognize the sound of their mother and father’s voices and  other noises.  They start putting meaning to what they are hearing and seeing. The lesser known senses that have to do with balance and body position (vestibular – where are heads and bodies are in relation to the earth’s surface;  and propioceptive -where a certain body part is and how it is moving) are also necessary in order to making meaning of the world around. If  these  are not working properly and are not in synch, they acquire   a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can effect learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated  and far reaching than that. For example, Brian King, Ph.D, a licensed clinical social worker who has Asperger’s, explained that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Temple Grandin, Ph.D, (Thinking in Pictures, Animals in Translation) is an animal scientist, and successful livestock handling equipment designer. Temple designed and built a deep touch pressure device ‘squeeze machine’ when she was a teenager as she needed the deep pressure to overcome problems of oversensitivity to touch, and helped her cope with feelings of nervousness.

Donna Williams, Ph.D, bestselling author, artist, musician, had extreme  sensory processing challenges as a child and still has some, but to a lesser degree.  Donna talks about feeling a sensation in her stomach area, but not knowing if her bladder is full, or  if it means her stomach hurts because she is hungry.  Other adults mentioned that they share the same challenge especially when experiencing sensory overload in crowded noisy areas.  They shared that they set their  cell phones to ring every two hours, to  prompt them to use the restroom,  in order to  avoid a potentially embarrassing situation.

Many adults on the spectrum find it difficult to  tolerate social situations. Meeting a new person can be overwhelming –  a different voice, a different smell and a different visual stimulus – meaning that difficulties with social relationships are not  due to just  communication, but are about the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

Many difficulties shared to varying degrees include:

  • Many  on the spectrum are mono-channel – meaning that they can only process one of their  senses at a time. This means that if they are listening and processing the information through their auditory sense, they cannot ‘see’  or process what they are looking at,  and vice versa.
  • Being overly sensitive to noise is a common feature. A baby or toddler may not respond to voices and other sounds or cover his ears every time there is a sound. Parents or the doctor may think the child is deaf and request hearing assessment. Other challenges include the inability to filter what is being heard so that if a person is speaking to them, they are unable to focus  just on the voice.  They hear all the background noise (ie, the hum of the refrigerator) at the same level as the voice.
  • Lights may be too bright to the point of being painful, especially fluorescent lights.  This effects the  visual processing of  what  they are looking at in that they may not see the whole picture, but pieces – kind of like some of the portraits painted by Picasso. A child may be looking intently at a book cover, but actually only ‘seeing’ the tiny little flower in the grass and not the whole scene of the farmhouse setting.
  • The feel of anything on the skin may be irritating to the point that it feels like sandpaper to some. Clothing and tags and socks and shoes can be unbearable for some; others may be able only to tolerate loose clothing made of really soft cotton. For some, brushing up against another person in the street or school hallways can be excruciating.
  • A heightened sense of smell can be a problem for some. Smelling something unpleasant and strong with no knowledge of what it is or where it is coming from can be very scary.
  • Overactive taste buds or underactive taste buds can create challenges in getting a child to eat. Add to that  the inability to tolerate certain foods because of the sensitivity to texture in their mouths, and you can imagine why many on the spectrum start out as picky eaters.
  • Many children on the spectrum have  challenges  in coordination and motor planning  tasks in one area or another, such as tying their shoes, or playing sports.
  • When there are too many sensory challenges at once, the person can  experience sensory overload, resulting in a behavioral meltdown. For some this may mean running away to escape for others, for others a tantrum, and still other extreme rocking and self- stimulatory behavior.
  • Many see the detail, but have a hard time seeing the whole. First example, they may see the eyes, nose and mouth like a Picasso painting, but not see the whole face.
  • Some may crave spinning and / or rocking,   the vestibular system that has to do with balance.
  • Some adults report that they do not have awareness of where they are in space and need to look constantly at the ground  in front of them to keep their balance even when walking.
  • Adults have described how many of the problems they face such as social relationships to be in large part due to sensory processing.