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

Review of A Full Life with Autism by Dr. Joshua Feder

This marvelous book lays out in plain and readable language the challenges of transition to adulthood for persons with autism and offers practical advice from the inside perspective of a mom and her adult son teamed as partners in the enterprise of helping him achieve a meaningful life.

It is inspirational, almost a parable, in its effect of drawing you into their story and teaching important principles, and yet it is also comprehensive in the executive task of helping us think about our values, goals and objectives in our mission to give a real life to our adults with autism and related challenges.

Perhaps one of the most important messages: behavior is a form of communication, and it is incumbent on the people around the person with autism to work to understand what that behavior is communicating without merely consigning it to a category of something to be gotten rid of.  Jeremy states: “I have oftentimes been the victim of ignorance.”  We must not be party to what Jeremy has suffered.  We need to be humble and helpful, persistently curious and ever respectful.  We cannot presume to know what we do not.  We must take the time to get to know the hopes and dreams of people whom we do not yet understand.

I was also intrigued by the undercurrent discussion of relationships that runs through the book in sections on friendship, sex, love, and support staff, as they all revolve around the quality and character of relationships.  How can we support, for the person and people around him, the development of more meaningful communication, relating, and problem-solving.  To the many thoughts already included I would add that it is often very helpful to support the person and caregivers by carving out regular reflective time to think through how things are going  – what is working, what isn’t, and what to do to try next to understand the situation better and try something different.

In all, this is a compelling, thoughtful, comprehensive and inspiring bible that belongs on the shelf of everyone who strives to help people with autism build a life in a complex world.

Joshua Feder MD, Director of Research of the Interdisciplinary Council on Developmental and Learning Disorders

1001 Tips for Parents of Autistic Boys and Autistic Girls.

Those who have heard me speak at conferences or who read my books know that I love information that is usable. When it comes to books on autism, practical rules. Two books have just been published that are full of useful tidbits that parents will appreciate, and these are 1001 Tips for Parents of Autistic Girls by Tony Lyons, and 1001 Tips for Parents of Autistic Boys by Ken Siri.

Like any book on autism, some of the tips in these books will apply to your child and your situation, and others may not. But with 1001 tips there are many to choose from. The book for parents of autistic girls is a great resource, as lately there have been a few books published on Aspie girls but nothing really for those on the other parts of the spectrum. When it comes to puberty and the teen years, parents of girls need information about how to handle the changes puberty brings (I think you get the picture).

On Thanksgiving Eve, I am grateful for the autism community of parents, professionals and support staff who have shared their wisdom as we search for enlightenment. In honor of the release of these two 1001 Tips  for Parents, I’m sharing my favorite tips for making it through the holiday season from my recent Psychology Today blog. Parents, you may find these useful in making it through the upcoming month and a half. I know how difficult it can be.

(If these tips don’t work, remember the three V’s – valium, vodka, vacation, but not if you are driving and certainly not for your child. – Disclaimer: The information appearing between these parenthesis was written to incite laughter, and is not to be taken as medical advice, please check with your doctor before self-medicating).

Why the holidays are so difficult for families with autism and what can help

Often parents in the autism community will joke that we become more religious during the holiday season that begins with Thanksgiving: we pray our children will behave while we are visiting relatives, we pray they will show interest in their gifts (and not just the ribbon), we pray they will sit at the dinner table, we pray they won’t hit the relative who tries to kiss them, and above all – we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving’ children.

Here are some areas of difficulties for children on the spectrum and their families during the holiday season, from my book, 41 Things to Know About Autism, published earlier this year :

The stores are full of noise, lights, lots of people, and winter holiday music that can create major overwhelm for those with sensory processing challenges.
• Social requirements such as relatives wanting a hug or a kiss that can fell painful.
• Holiday dinners where they are expected to try foods or sit for long periods of time with so many people and so much commotion.
• Many children are mesmerized by the colors and textures of the ribbon and wrapping paper and do not open the present but stim (get engrossed and play) with the wrapping
• The child does not understand personal space or have safety notions and so may run around the house or try to play with something breakable.
• Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can’t help it, and that discipline is not helpful when it comes to sensory overload and high anxiety.
• Parents have a difficult time because they know there are certain expectations of behavior that relatives and friends have and that the child cannot fulfill.

What can you do? With some preparation, planning and information sharing, the holidays can be less stressful and more enjoyable. Here are some tips on how to prepare your friends and relatives whom you will be visiting:

• Explain the difficulties your child has with the holiday dinner environment, decorations, noise etc.
• Let them know he is not just misbehaving, and that he is learning little by little to handle these situations
• Explain about dietary challenges so they don’t expect him to eat what everyone else is eating.
• Ask if there is a quiet room (child -proof in terms of décor) where your child can retreat for some quiet time to escape the commotion and noise.
• Send them a short but sweet letter or email ahead of time explaining why your child acts the way he does and the difficulties of the holidays form his point of view. They will have a better understanding of why she won’t wear a dress or he won’t wear a necktie, and why as more and more people start arriving, he tries to escape the room.

To prepare your child:

• Make a social stories book about what will be happening and the behavioral expectations. If possible include photos of who he will be seeing, the house  decorated during last year’s holiday season. If he is going to church, do the same for that environment.
• Play some of the music he may be hearing at this holiday season.
• Practice unwrapping presents – wrap a bunch of boxes up with favorite treats inside and have him open them to get to them.
• Practice a handshake if he can tolerate that.
• Write rules together – ie how long he thinks he can tolerate sitting at table, and the expected behavior.

On the day of the holiday celebration:

• Remind your child of the agreed upon rules
• Pack some little toys he can play with in his lap at the dinner table
• Bring some foods he can eat, especially if he is on a specific diet.
• Arrive early so that the noise level builds up slowly for him.
• Do not let the expectations of others ruin your day. Do what you need to do to make it as comfortable as possible for you and your child.

Holidays can be difficult because of all the expectations, as well as the sensory challenges, but with planning and information sharing the holidays can be more enjoyable for all.

“THE STATE OF THINGS” North Carolina Public Radio station WUNC

Click here for a link to the radio show

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

Autism: It’s A Family Thing

The Sicile-Kira Family

Autism: It's A Family Affair

This article was posted on my Psychology Today Blog, The Autism Advocate , on March 26, 2010.

A couple of years a go I was asked to write an article on The Affects of Autism in Families and in Partner Relationships,  for the May/June 2008 issue of  Family Therapy Magazine.  Lately I have been getting emails in regards to autism and marital stress, and I thought I would reprint part of the article here, since the information is still valid. If you are interested in this topic, you may wish to read the chapter on  the financial and emotional stresses of autism on the family that appears in my new book 41 Things to Know About Autism (just published by Turner Publishing).

Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations. Continue reading »

Temple Grandin: The HBO Movie starring Claire Danes

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.