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Kirkus Book Review: A Full Life with Autism

A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence is my latest book co-authored with my son Jeremy (foreword by Temple Grandin) that was published on March 27 by Macmillan. The book has received many excellent reviews. Here is one by Kirkus Book Reviews, whose reviewers  are known as the world’s toughest book critics:

For readers already knowledgeable about autism and Asperger’s syndrome, a hands-on approach to transitioning into adulthood.

Sicile-Kira (41 Things to Know about Autism, 2010, etc.) and her autistic son, Jeremy, join forces in this guidebook to help parents and their autistic offspring move beyond childhood and evolve into an adult life. Although special-education services exist for children with autism spectrum disorder, once a child reaches adulthood the lack of adult services becomes apparent. As the mother of a severely autistic child, the author understands the needs of caregivers and children on the spectrum alike to shift to a quality of life that provides independence for all parties. “To create the future that you and your adult child envision will take perseverance and work,” she writes. “But good quality of life and peace of mind is worth it.” Based on her research, Sicile-Kira has compiled the majority of available resources into an accessible handbook that provides information on topics such as romantic and sexual relationships, finding appropriate living arrangements for true self-sufficiency and acquiring and keeping a job. The author breaks each large, seemingly overwhelming undertaking into small, doable tasks. Bulleted lists sum up each chapter and help readers remain focused and on-track. Equally as effective are the short essays and “top ten tips for parents,” written by Jeremy. His voice gives a personal, honest perspective on the daily life, expectations and hopes of someone with special needs who wants to become as integrated into adult society as possible. Additional resources include reading material and websites for care providers and people on the spectrum.

A proactive method for raising an adult child with special needs.

 -Kirkus  Book Review

Questions from a Dad re Transition Services. Any Thoughts?

Here’s a few questions from a reader of  A Full Life With Autism.  Anyone wish to answer or comment? Please do so in comment section below.

Dear Chantal,
I have just begun reading your new book, A Full Life with Autism and am really appreciating all of the information that you have given.
My daughter is 19 years old and has Asperger’s syndrome.
We live in Eugene Oregon.
She is in a program that teaches living skills and work experience which has been excellent thus far.
She has only 1 more year after this one.
From what I was told, in Oregon, high school goes until 21.
She graduated from regular high school at 19 and this is the post education program.
You mentioned in your book that there are some states that offer educational services beyond 21.
Is there anyway that I can contest what the law has in effect for her in Oregon?
I feel that it would be so helpful if she could have at least one more year beyond next year before she heads into employment and life in general.
Also, I was wondering what states do provide services that go beyond 21?
Thank you and much appreciation for writing a book such as this for us parents and our children.

Expressing Gratitude

Melissa Crothers, Shapar Ostovar, Steve Crothers, Chantal

Recently I had a discussion with my family doctor about keeping good mental health in general for all types of people (college students, parents) and  she mentioned the usual items : regular exercise, good diet, and plenty of sleep. But then she mentioned another item that research shows is important to good mental health : having gratitude. Each day spending a few minutes acknowledging what you are grateful for, can improve your mental health. Interesting concept, right?

I know there are days when that “gratitude list” seems pretty short. For some the list consists of being thankful they got through a day of  not having to  call  the doctor,  or being grateful that the respite worker showed up so they could leave the house to do the shopping.  But really, every day there is something to be grateful for, and our children (on and off the spectrum) can learn to focus everyday for a few minutes on what they have to be grateful for – it could improve their mental health.

Right now, I would like to express gratitude about all the people over the years who have shown interest in my son, or who have helped him become the person he is today.  Many of these people were at the Poseidon Restaurant in Del Mar on Monday night to help celebrate the release of Jeremy’s first book, A Full Life With Autism. We are grateful to be surrounded by such wonderful people and to be part of this local community. I’ll be posting more photos as time goes on; I’ve put a few here.

So tell me, what can you express gratitude  for today?

Dr. Carl Hillier's Team

Join the Conversation – A Full Life With Autism

Jeremy and I wrote A Full Life With Autism in order to empower families. We hope that our experience – from the point of view of both a  young man reaching adulthood, and  a parent helping to prepare him for the future – will help you think about all your child needs – no matter his age- to prepare for the adult years down the road.

We’ve also highlighted the experiences of others,what organizations are doing to help prepare a brighter future, and what life skills a person needs to be successful as an adult.

We’ll be writing here often and we hope that you will join the conversation about creating a full life with autism. Your comments, questions and suggestions are most welcome here.

If you’ve read any of my books and articles, or Jeremy’s, then you know about us. Tell us your story. You are not alone, and we want to hear from you!

It takes a village to raise a child, and a community to make an enjoyable life.

Together, we can make a difference. Join the conversation!

Q & A Webinar: Temple Grandin, Chantal & Jeremy Sicile-Kira : A Full Life with Autism

Temple Grandin and Claire Danes

On Saturday, April 7 th from 8:00am PST to 9:30am PST (11:00am EST to 2:00am EST), Visiting Professor Temple Grandin will answer questions with Chantal Sicile-Kira  moderating. Then, for those who want to stick around,  from 9:45am PST to 11:15am PST (12:45pm EST to 2:15pm EST) Chantal and Jeremy Sicile-Kira will be answering questions in regards to their new book, A Full Life With Autism for which Temple wrote the foreword.

This is an opportunity to ask Temple Grandin questions, and get insight as to what is important for preparing our children for life as successful adults. Chantal and Jeremy will answer any questions you may have about raising a child with autism, and the transition to adulthood.  Register for our newsletter to sign up. (If you are already signed up, you will be receiving instructions shortly).

What questions do you have? Let us know, we’ll answer them!

Temple Grandin, PhD, is a doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestock industry on animal behavior. As a person with high-functioning autism, Grandin is also noted for her work in autism advocacy and is the inventor of the squeeze machine designed to calm hypersensitive people.  Grandin is listed in the 2010 Time 100 list of the 100 most influential people in the world, and the subject of the Emmy award winning  HBO documentary, “Temple Grandin.” Temple is the author of many books including, The Way I See It, Developing Talents, and Animals in Translation.

Chantal and Jeremy Sicile-Kira

Jeremy Sicile-Kira was diagnosed severely autistic as well as mentally retarded when he was born in 1989. In 2010, he gave a commencement speech at his high school graduation.   Jeremy  co-authored a book A Full Life with Autism ( Macmillan, March 2012) as a  guide for parents and educators helping those on the autism spectrum transition  into meaningful and independent lives.  Jeremy writes for  autism magazines, and his new website, www.JeremySicileKira.com.  He is one of three national Youth Advocates of the Autistic Global Initiative, a project of the Autism Research Institute. In 2007, Jeremy was highlighted on MTV’s documentary series True Life in the episode, “I Have Autism,” which won a 2007 Voice Award. Follow him on Twitter.

Chantal Sicile-Kira is an award-winning author, columnist, and autism advocate, as well as the founder of of AutismCollege.com which provides practical training  to parents and educators. Her latest book, is  A Full Life With Autism, co-authored with her son, Jeremy.  Their  story has been covered by a wide variety of media, including NPR, PBS, MTV, The Chicago Tribune, Newsweek, and Fox News.

 

13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

 Often I get emails from parents who  think their child is getting worse when they hit the double digits.  That’s what it seems like when puberty hits!  So I’m reprinting this article I wrote about adolescence that  first appeared in the Autism – Asperger’s Digest. The article appeared a few years ago, but the worries and challenges faced by parents are the same as they were when I wrote it. I hope you find it useful.

As well to provide an opportunity for parents and educators to have more in-depth information, I’ll be giving a course on Adolescence and Autism here in the  Autism College Classroom on September 10, 17, 24  from 6:00 pm to 8:00 pm PST  (9:00 pm to 11:00 pm EST)   Participation is limited so that participants can have time to ask questions and get advice.  Click here for a description,  Click here forpricing and to enroll. Questions? Email me at Chantal@AutismCollege.com. 

 13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

0009Living with a child on the autism spectrum day after day, parents often miss the little changes that are so typical of all kids’ development. One day I looked at my son, Jeremy, and realized he was already up to my chin. And what was that – facial hair? His behavior started to change as well. As a young child he’d always been compliant; we spent years trying to teach him to say “no” and mean it. So I was thrilled when he just didn’t want to do what we wanted him to do anymore.

Autism and adolescence: each on their own can be interesting and challenging, to say the least. Together, they form a volatile mix that can arouse daily anxiety in even the most prepared adult. If you live with or work with a pre-teen with an autism spectrum diagnosis, attention to the following 13 points can help you and your child navigate those years a little more smoothly. One caveat: it doesn’t matter the functioning level of your child with autism or Asperger’s; everything here applies. You’ll work them out differently depending upon his or her cognitive, emotional and/or communication abilities, but don’t overlook them, thinking they don’t relate to you child. They do!

  1. Noncompliance: it may not be autism, it may be adolescence. Whether or not they have autism, there’s a definite ‘shift’ in behavior and personality when children turn into teenagers. Wanting your attention changes to wanting their independence. For kids on the spectrum, this behavior change may look like non-compliance; they don’t follow through on your requests as before. But it’s actually a normal part of their development, entirely aside from their autism. As a parent it’s important to support your teen as he struggles to become his own person, and even though it may be hard to appreciate, this is a positive development. After years of being taught to do as he is told, your teen needs to start learning that it is acceptable at times to say ‘No,’ or he might find himself in dangerous situations with peers or others looking for an easy victim to prey upon.
  2. Teenagers need to learn to make their own choices. Giving choices to your growing teen will teach him about decision making and accepting the consequences of his choice (good and bad), as well as help him realize he will eventually have more control over his own life. This applies no matter what the functioning level of the child. Offer him choices, regularly, and abide by the choice he makes. Remember, as he gets older he will want and need to be more involved in his life and his transition planning. By letting him make choices now (within your parameters at first) you are teaching him valuable life skills.
  3. Chores teach responsibility. At any age, it’s good to teach children that being part of a group (whether it is a family, a work group, or a community) brings with it a certain level of responsibility. If your pre-teen has somehow been exempt from chores and group responsibility, let this slide no longer. Teens need to learn that living in a house with other people entails responsibilities as well as pleasures. Chores teach the teen to be responsible for himself, to live independently, as well as foster self-worth and self-esteem. ALL individuals with autism can be taught to contribute at some level. Do make sure your child has opportunities to do so.
  4. Watch out for seizures. One of every four teenagers with ASD will develop seizures during puberty. Although the exact reason is not known, this seizure activity may be due to hormonal changes in the body. For many the seizures are small and sub-clinical, and are typically not detected by simple observation. Some signs that a teen may be experiencing sub-clinical seizures include making little or no academic gains after doing well during childhood and preteen years, losing behavioral and/or cognitive gains, or exhibiting behavior problems such as self injury, aggression and severe tantruming. (Read my post about a useful book here).
  5. Talk to your child about his/her changing body. Imagine how scary it must be to realize your body is going through some strange metamorphosis, you don’t know why and there is nothing you can do about it. Whether your child has Asperger’s Syndrome and has sat through hygiene classes at school, or he is more impacted by autism and you’re not sure how much he understands, it is important to discuss the changing male and female body in a simple way he can understand. Otherwise, your teen may be overly anxious and agitated when she starts menstruating or when he has wet dreams. Visuals that include photos or drawings and simple words may be helpful, especially at the beginning. Be concrete and don’t overwhelm – this is certainly not a one-time talk!
  6. Masturbation: a fact of life. Let’s face it; masturbation is a normal activity that almost all teenagers engage in. Once discovered, it is an activity hard to stop, especially for individuals who enjoy self-stimulatory activities and can be obsessive compulsive, as are many people on the autism spectrum. The best approach is teaching your teen that this is a private activity to be done only in private at home, in a designated place such as his bedroom.
  7. Relationships and sexuality: topics that need to be discussed. Sexuality is a topic that most parents are not comfortable discussing with their children, even their neurotypical teens. However, it is necessary to talk to your teen on the spectrum about sex and the many types of relationships that exist between people. It is naïve of parents to think that because their child has autism s/he won’t need this information. Teens talk, and invariably your child will be hearing about it from their NT peers at school. Whatever the functioning level of your child, he needs to be taught about appropriate/inappropriate greetings, touch and language when interacting with members of the opposite or same sex. Don’t leave this important part of his social-emotional development to locker room education.
  8. Self-regulation is important for life as an adult. An important skill for every teen to learn is the ability to control his or her reactions to emotional feelings and sensory overload. Hopefully, by the time they are teens your child or student has learned to recognize their feelings and impending emotional or sensory overload, and ways to handle the situation. In school this could mean practicing self-calming techniques or signaling to the aide or teacher they need a break and having a ‘safe place’ or quiet room to go to. At home, teens should have their own quiet spot to retreat to when overwhelmed. And parents: respect their need to do so!
  9. Self-esteem is the foundation for success. While children are young, start building this foundation by emphasizing strengths rather than weaknesses. If your child with ASD, no matter what his age, has low self-esteem pay attention to the messages he is receiving from people around him at home, at school and in the community. In all likelihood, the message he is hearing is that he can’t do anything right. Teens need to be told when they are acting, responding and communicating appropriately, as well as that their (considerable) efforts to do so are appreciated. Where there are challenges, it is up to us, as the adults in their lives, to help them find strategies to be effective. Teens can be at high risk for depression. Parents should ensure their teen knows they are valued and loved under all circumstances, not just when they ‘get it right.’
  10. Self-advocacy is required for independence. Eventually your teen will be living away from home and will not be under your protection. He needs to know how to speak up for himself. Start this training while he is in school. IDEA 2004 mandates that students be invited to participate in transition planning and this supportive environment can be good ‘training ground.’ Make sure your teen is aware of his strengths and weaknesses and how he is different from others. In this way the teen can gain a real-life understanding of areas he may need to improve upon or that require assistance from others, and areas in which he is proficient, or that are his strong points to build upon.
  11. Bullying is a serious problem and should be treated as such. Bullying can range from verbal taunts to physical encounters. At any level it is not an individual problem, but a school problem. Unless your child’s school strongly enforces a no-bullying policy from the principal on down, your teen may have a difficult time. Teens on the spectrum are poor at picking up social cues, understanding ulterior motives, sarcasm, and predicting behaviors in others. As such, they unknowingly put themselves in unsafe situations. At other times their unconventional grooming or dress, often stilted language and rule-bound obsessions can render them targeted victims. Ensure your teen learns the meaning of non-verbal behaviors and the hidden curriculum (i.e. the unstated rules in social situations). Enlist the help of a neurotypical teen or sibling when shopping for clothes or getting a new hairstyle so your teen has at least a semblance of ‘fitting in’ with his peer group.
  12. The Individualized Transition Plan (ITP) is your teenager’s business plan for the future. Second only to the early intervention years, the transition years in high school are the most important years in your child’s educational life. Skills your teen needs to learn to survive and thrive as an adult, in adult settings, should be the focus of this time in school. The ITP, mandated through federal special education law, is the roadmap for your teen’s future. Once your child graduates or ages out of high school, mandated services are few and programs have waiting lists that extend into years. Spend time (and include your child as much as possible) thinking about what he wants to be doing when high school ends, and 5-10 years from now. Then plan how he will get there and what skills will be needed. This “futures planning” should drive the goals written into his IEP.
  13. Parents, you need to take time out for yourself; it’s good for your child too. With all the responsibilities you have as a parent of an adolescent on the spectrum, you need to take some time out for yourself. Whether it is a short break you take every day to go for a walk, exercise or engage in a favorite activity, or a weekly evening out with your significant other, you need to recharge your batteries. This is also positive modeling for your pre-teen and teen. It teaches that life can be stressful and overwhelming at times for all of us, and that we need to develop ways to manage our stress, and enjoy life, not just l

Just the other day I was looking around the house for Jeremy. I knocked on his bedroom door. He opened the door a crack, one of his Guitar World magazines in hand. I could hear Dave Matthews playing in the background. “Go away, Mom,” he said, and I did, with a little smile on my face. Jeremy is significantly impacted by his autism. Yet moments such as this remind me that he is first and foremost a teenager, with his own personality, his own wants and wishes. He’s on the road to becoming his own person, figuring things out in preparation for adulthood. I wouldn’t have it any other way.

For more information on Adolescence and Autism, sign up for my on-line course.

Replay: Autism Safety and Crisis Prevention Conference (free and online)

For those that missed the Autism Safety and Crisis Prevention interactive conference on AutismCollege.com, it is being replayed for free on Saturday, March 10th, from 8:00am to 5:00pm PST (11:00am to 8:00pm EST).

AutismCollege.com in partnership with the National Autism Association (NAA)  presented a series of free webinars on Autism Safety and Crisis Prevention. This online conference was sponsored in part by The Social Express. Due to requests from people who could not attend, it is being replayed. (Note that listeners will not be able to send in questions to be replied as for the live event).

Topics and presenters on Saturday March 10th, are as follows:

  •  8:00am – 9:30am PST, Dr. Nora Baladerian, Ph.D. – “How Can Parents Reduce the Risk of Sexual Abuse of Their Child or Young Adult?”
  • 9:45am – 11:15am PST, Dr. Lori Ernsperger – “The 3 R’s to Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report”
  • 11:45am – 1:15pm PST, Dr. Joshua Feder – “The Problem of Depression and Suicidal Ideation in Autism and Related Disorders”
  • 1:30pm -3:00pm PST,  Wendy Fournier, NAA – “The Scope of Wandering, Prevention Strategies, and Resources”
  • 3:15pm to 5:00pm PST, Pat Amos, M.A. – “Preventing and Eliminating the Use of Restraints and Seclusion”
To register for free, go here. For a complete  description of the presentations, and bios of the presenters, go here.
Transcripts of the conference may be pre-ordered here.  A portion of the profits will be donated to the National Autism Association for their Safety Programs. Delivery may take up to three weeks. Thanks for your patience.

Autism in the House? Keep Calm and Carry On

“ I am frankly not acting nicely to new support staff.”

When it comes to autism, some things get easier and some things get harder as they get older.  Neurotypicals at 23 can be ornery, and so can 23 year olds on the spectrum.  Some things don’t change.

Although the transition to the teen years can be difficult; the transition to adulthood can be even more challenging. It’s a balance between giving them the freedom to make their own decisions, and providing the familiarity of structure  they seem to need.  Some days can be tough. On those days, I think of the British war poster given to me by a friend that I have hanging in my office.