What is Sensory Processing Disorder and How Is It Related to Autism?

March 3, 2010

Earlier this week,  there was an article in The Boston Globe about sensory processing disorder. It stated that a group of researchers, families, and occupational therapists is aggressively lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders, which is currently being drafted.

Many readers may wonder, what is a sensory processing disorder?

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.

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Modern Love

February 9, 2010

My son is pining for a girlfriend. He’s on Facebook.

Relationship Status: Single
Interested In: Women
Looking For: Friendship, Dating,  A Relationship, Networking.
Political Views: Go Obama!
About Me:  I like to listen to music and walk on the beach. I can type with one finger. I have autism.

Jeremy is quite a catch – he’s buff from working out at the gym,  has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series.  Never mind that he is autistic,  and  needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress).

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds.  I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50’s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

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One Small Step Towards Self-Regulation

February 6, 2010

How to teach your teen with autism to request a break

Self –regulation is a needed life skill  not practiced  by most teenagers. Often teens on the spectrum need sensory breaks to help them self-regulate, yet some are unable to communicate the need for one. If you are a parent or an educator, you may want to consider teaching the teen to request a break using a “ I need a break” card.

Let’s  say you have a student that you work one-on-one with for a one hour slot of time. Every time you sit down to work with him, after about 20 minutes he gets up and leaves the worktable and there is no holding him back.  What you need to do is teach him to communicate to you when he needs a break,  and allow him  to have  those needed breaks within reason.   Here is one way to do that: Continue reading »

One small step towards self-regulation

February 6, 2010

How to teach your teen with autism to request a break

Self –regulation is a needed life skill not practiced by most teenagers. Often teens on the spectrum need sensory breaks to help them self-regulate, yet some are unable to communicate the need for one. If you are a parent or an educator, you may want to consider teaching the teen to request a break using a “ I need a break” card. This may be helpful in preventing meltdowns or compliance issues. Teenagers need to be given more control over their time and need to be able to request necessary breaks  in an appropriate manner.

Let’s say you have a student that you work one-on-one with for a one hour slot of time. Every time you sit down to work with him, after about 20 minutes he gets up and leaves the worktable and there is no holding him back. What you need to do is teach him to communicate to you when he needs a break, and allow him to have those needed breaks within reason. Here is one way to do that: Continue reading »

Autism study retraction opens conversation

February 6, 2010

Autism study retraction opens conversation

by Jackie Johnson on February 5, 2010

in Children & Families,Health & Medicine

A medical journal this week retracted a study it published in 1998, saying indications of a link between the MMR vaccination and autism were false. Autism author Chantal Sicile-Kira reacts to that retraction, saying it’s kind of a setback and a disappointment, but it doesn’t answer any questions.  Sicile-Kira says the back-pedaling highlights the fact that more studies and research needs to be done to find out what causes autism. She first looked at this issue very closely when she wrote her first book, Autism Spectrum Disorders, which won the outstanding literary award from the Autism Society of America in 2005, at which time she says there were relatively few people talking about the connection between vaccines and autism.The autism expert, parent of an autistic child, and author is in the Milwaukee area presenting a workshop on what to expect during an autistic child’s adolescence.

NOTE: The session will be from 9 a.m. to 3 p.m. Friday at Country Springs Hotel Conference Center, 2810 Golf Road, Waukesha.

NOTE: Chantal Sicile-Kira has a book coming out “41 Things About Autism” in March-April 2010 that will answer the most common questions that people ask her about autism and having a child with autism. She’s also promoting a new biographical HBO movie about her close friend Temple Grandin, who is a very popular autism activist, who also has the disease.

I am an adult and I think I may have Asperger’s Syndrome (AS). How and why should I get diagnosed if in fact I do have AS?

February 2, 2010

This article originally appeared in The Autism Advocate blog at PschologyToday.com

Usually I write mostly about children or adolescents on the autism spectrum. However,  I’ve been getting quite a number of emails lately from adults wondering if they have Asperger’s Syndrome or not, so I decided to share some information from my book to be published March 25, 41 Things to Know About Autism. Asperger Syndrome (AS) is a high functioning form of autism that has only been an official diagnosis since 1994. Adults with AS who seek help with challenges they face are sometimes misdiagnosed with depression, bipolar disorder, or other mental illnesses. It is important that adults questioning whether or not they have AS, seek the services of a professional experienced in assessing AS in adults (see resources below).

If you are an adult with characteristics resembling AS, why does it matter if you get a diagnosis or not? If you are functioning well and have a job, and are happy with the life you have, then there is no reason to get a diagnosis. On the other hand, if you are struggling in important areas in your life, a diagnosis can provide a framework for understanding and learning about behavioral and emotional challenges that have seemed unexplainable until now. Although challenges in sensory integration (the ability to organize sensory information for use by the brain) are not considered diagnostic criteria, I have yet to meet a person with Asperger’s who does not have a sensory challenge of one kind or the other.

Some areas of difficulty where Asperger’s Syndrome could possibly be a factor:

  • Do you have a tough time making and/or keeping friends, and don’t understand why? Or perhaps your friends are only interested in you when you’re engaged in an activity or interest that you share, but you have not built a personal relationship.
  • Are parties not your thing because you feel uncomfortable or overwhelmed? Social events are a great way to meet people and they can be essential for business, dating, and even marriage. But if you are uncomfortable because you are unsure of what to wear, how to start conversations, you have a hard time reading body language, then these supposedly fun events can be torturous.
  • Do you avoid social events because you can’t hear the person next to you over the hum of the crowd, you don’t like the touch of shaking people’s hands or having people pat you on the back? Do you a problem focusing on what people are saying while looking at them?
  • Have you ever met someone special that you wanted to get to know better, but didn’t have a clue as to how to go about asking him /her out on a date?
  • Has someone you are very fond of pointed out certain behaviors that drive them crazy and suggested that you might have Asperger’s Syndrome. Maybe there is something to their suggestion.
  • Do you have a passionate interest in a certain subject or topic? Perhaps you’ve been called obsessive but you think you’re just very interested in one incredibly fascinating subject matter. This passionate topic could help you in other areas of your life, if only you knew how to use it.
  • If you are a college student , do you have trouble keeping up with coursework and finishing a degree? Perhaps you could use some help in getting and staying organized and planning your time.
  • Do you have trouble in getting and keeping a job that reflects your abilities even though your credentials look great on paper? It could be that you are very talented but don’t have a clue as to how to do the sell your self during an interview. Maybe the office politics are just something you don’t get, so you are routinely passed up when it comes to promotions.

Why you should get a diagnosis, if indeed you do have Asperger’s Syndrome:

  • You can begin the process of learning to live more adaptively with an Asperger’s brain.
  • Getting a diagnosis may help you find the strategies you need to be more successful in the areas where you are facing challenges
  • It may also help others in your life understand why you are the way you are, and respond to you differently.
  • There is a whole community of people who get who you are, how you think, how you feel, and that you can share experiences with.
  • There are autism and AS support groups out there (on-line as well as in person) who can help you in many ways so you don’t have to feel isolated and figure everything out for yourself .
  • You may be eligible for service services in areas of need thanks to having a diagnosis – perhaps help with finding a job or a place to live.

How to find out if you have Asperger’s Syndrome or not:

  • Typically you need to see either a clinical social worker, a licensed professional counselor, a psychologist, a psychiatrist or neuropsychiatrist. It is important to see a professional who specializes in autism spectrum disorders or Asperger’s Syndrome, who is familiar with Aperger’s Syndrome in adults.
  • One way to find the right person in your geographical location is to contact The Global and Regional Asperger Syndrome Partnership (GRASP), http://www.grasp.org/and the Autism Society of America (ASA). These organization may have chapters in your area. If not, they can provide you with the names of professionals who would know someone to refer you to, in your geographical area.
  • if you know parents of children with autism, ask them about the professionals in your area familiar with autism. If those professionals cannot help you, they will refer you to someone in your area familiar with AS in adults.

To find out what some adults have to say about growing up with AS, read Autism Life Skills.

I think my child may have an autism spectrum disorder (ASD). What do I do?

January 21, 2010

This article originally appeared in The Autism Advocate blog at PschologyToday.com

Getting a diagnosis – if indeed a child has an autism spectrum disorder (ASD) – as early as possible is important because research shows that early intervention is the best intervention. Yet, not all pediatricians recognize the early signs of a possible ASD.

Although diagnosis rates of autism are up, this does not mean that all doctors or medical professionals are aware of the different signs of autism in different types of babies and toddlers. A diagnosis is made by observing the behavioral characteristics in three areas : communication, social interactions, and imaginative play or thought. As there are no physical characteristics that are shared by those in the spectrum, and there is a wide range of abilities and disabilities – it is not always easy to identify.

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Temple Grandin: The HBO Movie starring Claire Danes

January 13, 2010

Temple Grandin, a world-renown designer of livestock handling facilities and a professor of animal science at Colorado State University, is arguably the world’s most famous person with autism. Temple has written many books about autism, others about animals, and even more about both. Last week I called Temple (who wrote the forward to my first three books) to get her input on my latest book, 41 Things to Know About Autism. Temple told me that the long-awaited “Temple Grandin” directed by Mick Jackson is finally premiering on HBO on February 6. The screenplay by Christopher Monger and William Merritt Johnson is based on Temple’s book “Thinking in Pictures,” as well as “Emergence” by Temple Grandin and Margaret Sciariano.

For Emily Gerson Saines, Executive Producer, this movie has been a labor of love for nne years. A parent of a child diagnosed at three, she was given Temple’s autobiography, “Thinking in Pictures,” by her own mother. The book became a source of inspiration for her in raising her own child.

Temple is well-known for her ability of thinking in pictures, and I was therefore curious as to how she would react to seeing her life in images created by others, not necessarily the same pictures she has in her mind about her life. Temple discussed her thoughts with me about the movie.

How much input did Temple have on the making of this movie?

“I gave input into the screenwriting, spent a good amount of time, four days, with the writers and two days with the director. I think they did a great job. They built a cattle dipping vat based right on my original, off of my drawings. My drawings are all over the movie; I really liked that. In a scene near the end of the movie, I am selling a job to one of the meat plants, my drawings are out on the conference room table. Well, not my originals, I copied them at Kinko’s! They did really cool animations of the conveyor system for handling cattle at the slaughter plant from those drawings – really cool animations taken form my drawings – they really emphasized my projects. The cattle stuff was very accurate. They showed all the sexual discrimination I had to put up with in the livestock field. Women did not work in the yards back then just the office. It’s a lot better now.”

What was it like for Temple to see Claire Danes playing her?

“Weird. It was weird to see me on the screen. It was like going in a weird time machine, going back in a time machine into the 60’s. They put a wig on Claire and dressed her up in clothes and she had to wear these ugly false teeth apparatus. She looked like me, except she was shorter than me and we couldn’t do anything about that, but she sounds and moves just like me. She does accurately portray how I would act in the 60s and 70s. Claire did a great job.”

How did Temple help Claire prepare for the role?

“We met in New York for a half a day and I gave her all my tapes of me, of old lectures from the late 80’s, early 90’s and an old Larry King show I did. I only had still photos from childhood; they didn’t take video in our house then. Claire had a voice and movement coach.

Did the film attempt to portray how Temple’s mind thinks in pictures; and if so how did they do that?

“The movie is great. They really showed how my mind works. They have a neat scene where they show how I think in pictures, very effective. I love how they showed that. They showed sequentially pictures of ‘shoes’ that is exactly how I think – like snapshots of different types of shoes: high heels, flats, all different types and shapes and colors.”

What was Temple’s favorite aspect of the movie?

“The visualizations and they way they used my drawings. They showed the optical illusion I built, the science teacher challenged me to do that, the Amesʼ “Distorted Room. They built a working squeeze machine I designed and the gate at my aunt’s ranch.”

What was it life for Temple being on the movie set, watching them put her life story into pictures?

“I only watched a small part of it being filmed. I watched it through a monitor because I didn’t want to make Claire nervous. What really interested me was the number of people on the set that had Asperger’s Syndrome. Smart people. Let’s just say they weren’t sweeping the floor. They are all part timers. There are a lot of technical jobs in production and it was like a big construction project.”

What message does Temple want people to take away from seeing this movie?

“I hope one of the things they get from it is the importance of a good teacher and mentors. Mr. Carlock (David Strathairn) saw that I had some areas of strength and he developed that. He spotted my ability with science; mentors are attracted to ability. Sometimes you find the mentors in the oddest places. In fact, the first meat plant I ever went to, I got in because I met the wife of their insurance agent, because she liked my hand embroidered shirt.

People are going to hire you because of your skill not your personality. You need to have a portfolio to show them what you can do. When I first went into the American Society of Agricultural Engineers, they thought I was weird, they didn’t even want to talk to me. Then I whipped out the cow dip vat drawing and that made them respect me.

Also, it’s important for people with Asperger’s to understand they need to make things that people want in order to make a living. Like the opening gate at my aunt’s farm – I would get upset at my aunt, but I ended up building the gate my aunt (Catherine O’Hara) wanted. I figured out how to open the gate without getting out of the car. This gate – it solved other’s people’s problems. That’s something you can make money from. The gate was an early project at age 16 before I made the squeeze machine. I hope this movie inspires a lot of parents.”

What is it like for Temple to know that there is a movie of her life out there?

“Well, I’ll never get a fat head. I’ll go on the movie tour, and go on my book tours, and then I’ll come back here. I never forget what my real job is, which is my livestock stuff. Today, I’m having lunch with one of my students to discuss a project we are working on together. That’s my real job.”

A few days after talking to Temple about the movie, I was given the opportunity to see it. I have to agree with Temple. It’s a great movie and not just for people interested in autism or cattle, because It’s a wonderful, inspirational, and entertaining story. The messages that Temple hopes people will take away are true for everyone, not just those with Asperger’s, especially in this economy. As a friend of Temple’s I was impressed with Claire’s interpretation of her: she really sounds and moves like Temple. As a former production professional, I appreciated the effort and care with which they took words on a page and translated them into sounds and images that accurately portrayed a person who is a hero to many of us – not an easy thing to do. As a parent of a child with autism, I could not help but relate to Temple’s mother, Eustacia Cutler (Julia Ormond), and was moved to tears during the final scene. Watch this movie, you’ll be glad you did.

This article was first published on HuffingtonPost.com, January 13, 2010.

New Year’s Resolutions

December 30, 2009

Seven tips for a more livable New Year

If you are like me, you’re happy to see the back end of this year and are looking forward with renewed hope to the New Year just round the corner.
Here are  some tips for a more livable New Year  that  don’t  need to cost  you money, and if practiced regularly  may even save you som, because you will feel less stressed, and require less self-medication or visits to the doctor. These tips are useful for everyone, not just for people with autism in their lives either as parents or professionals, so feel free to pass them  around. I hope you will adopt one or two of them as your New Year’s Resolutions:
·      Practice self-care.  Even if it is just for 15 minutes a day, take a breather.  Just like the flight attendants on airplanes instruct you to put the oxygen mask on you before helping a child, you need to take care of yourself first to be able to take care of  others.

·      Acknowledge what you have accomplished. Too often, at the end of the day, people think about all the things on their to-do list that they have not gotten done.  Do yourself credit – think about all that you did   accomplish that day. You will be amazed at how long that list is, and you will sleep better at night.

·      Focus on the positive. Nothing in life is perfect. Every situation has appositive and a negative aspect to it.  Focusing on the negative will leave you spinning your wheels. Focusing on the positive will give you the energy you need to  move forward.

·      Remain true to your life goals and values. If you know what you want, keep your eye on the ball. Evaluate the opportunities that present themselves and ask yourself, “Is this is line with my plan for myself, my family, my community? Is this in line with my values? ” If yes, accept. If not, decline.

·      Forgive yourself. We’ve all done something or said something we’ve later regretted, or perhaps not behaved or worked up to our usual high standards. Learn from the experience, but don’t dwell on your mistakes.

·      Forgive others. No-one is perfect, and as you wish to be forgiven by others, you must forgive those around you.

·      Practice wisdom, serenity, and courage. A wise man once prayed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” No matter your religious beliefs, we all need that kind of wisdom.
Best wishes to you and your family for a happy, healthy, and wealthy New Year.

First posted on Examiner.com December 30, 2009

Dear Santa

December 24, 2009

Dear Santa,

This year, I am not asking for a cure for breast cancer, or cures for world hunger, ignorance, the crappy world economy, homelessness, the negative aspects of autism, greediness, war, global warming, or any other crisis facing the world today.

This year, I am being purely selfish and asking for fulfillment of a few basic needs for my family. I realize that compared to others, we are a very fortunate family because we have a roof over our heads, and my husband and I still have work (although we are making only 2/3rds of what we were making the year before and the cost of living is way higher, but why quibble?).

At the risk of appearing greedy, here is my wish list for what I would like to find under the tree this Christmas :

1. $100,000 for a college education for my daughter, Rebecca. She is graduating from high school in June, and according to the local papers, she will be lucky if she graduates from a state college or university in 5 or 6 years, if she gets in at all. Our beautiful state is broke, so there will be less students admitted to the colleges in fall 2010. Rebecca is applying for scholarships, and working some, but it’s not going to be enough. There is not much in the way of student loans anymore. We have equity in the house, but we need to save it for real emergencies, like if our income continues to spiral downward (oh, and our son requires 24 hour support, and how are we going to pay for that?). Please, can you help us here? We’d be grateful even for a quarter of that amount.

2. A bigger iPhone for my son, Jeremy. I know this may sound like a weird request, but he can’t talk very much due to his autism, and Apple has this great program called Proloquo2Go which can give him a voice. Problem is, the iPhone keys are really too tiny for him. Jeremy uses another assistive technology device, but it is heavy, hard for him to push the buttons, and frankly looks very ‘special ed.’ Not only that, but it costs a small fortune compared to the iPhone, and breaks down often. Communication is key to being an active part of society, and looking cool is important at his age. Please tell me you agree and grant this wish.

3. If you don’t have any pull with Apple re: the iPhone, another wish high on my son’s list is a girlfriend, because besides communication (and $$$) what is life without love or a warm body to hug? I’m sure living at the icy North Pole, you and Mrs. Santa can relate to that. Seems like something a mom shouldn’t have to ask for her son, but although my Jeremy is buff from working out at the gym and really cute, he’s not typical boyfriend material what with his autism and all. Funny thing is, Jeremy doesn’t understand why I just don’t run out to Costco and get him a girlfriend – I’ve been getting him everything else he needs all these years like occupational therapy, speech therapy, physical therapy, vision therapy; why not a little massage therapy? Maybe you can help with this one?

4. For my husband and I, my request is not that you give us anything, but we would like you to take back the 15 extra pounds each that we have put on stressing out on #s 1,2,3 above on our wish list. Feel free to re-gift them to someone else who could use a little fattening up. We would be happy to know that we are helping a family in need.

5. Last, but not least, For our dog, Handsome, and our cat, Gabe, a year’s worth of food would be helpful. We’ve had to start rationing and Gabe keeps trying to get outside to hunt for her dinner, and we really like the birds in the area – we don’t want them to end up in Gabe’s tummy.

I guess that’s it for what we’d like to see under the Christmas tree this year. I know there are people worse off than we are, and I feel guilty even sending you this letter. I hope you understand.

Thank you in advance, Santa. We wish you and Mrs. Claus, all the elves, and the reindeer, a very Merry Christmas and a Happy New Year!

Sincerely,
Chantal

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