I cherish this flower
Recently I was invited to speak in Sarnia, Canada – which is across the border from Detroit. The conference organized by the Jumpstart Lambton Kent Teen Transition committee was entitled “Clarity, Please!” and was about the transition to adulthood. They launched a new website which has lots of relevant information and will make it easier for families and teens with special needs to find the help they need. As well, there is a partnership with Ability Online, a free monitored, supportive, online community for kids, teens and young adults of all abilities.
I love presenting at different conferences around the planet as it gives me the opportunity to hear the experiences of different families, organizations, and the young adults who are on a mission to create the life they dream of. I presented on Autism Life Skills and A Full Life with Autism – information that is valid for any person with a developmental disability. At “Clarity Please!” There was a panel of young adults and their families who talked about their transition to adulthood and how that was going. Although all the stories were different, there were some traits that all the families shared. These were:
- the parents were strong advocates
- they raised their children to have good self esteem
- they made connections in the community
- they partnered with helpful agencies
- the young adults had learned to be advocates for themselves
- they encouraged their young adult to work towards creating the life they dreamed of, even if it was different from what the parents had imagined for their adult child.
Karen Holland and David Schaller of Pathways Health Centre
At each conference there are always some touching and funny moments. My most embarrassing moment at the conference was when I mistook the mayor of Sarnia and a member of parliament (who were sitting at the presenter’s table with me) as upcoming members on the family panel. I thought it was funny when Dave Schaller, Manager of Family and Community Services at Pathways Health Centre for Children recapped the day saying my talk was “at times funny but always real.” That’s how I feel about trying to access services for my son, Jeremy!
The most touching moment for me was at the end of the day. A father walked over and gave me a flower – fashioned from pipe cleaners that had been placed on each table along with other fidget items. “Here,” he said “My son made this for you.” Instances like this make the traveling to share information all worthwhile.
I received the book Silently Seizing a while back and only recently found the time to crack it open – and I’m glad I did! Most people recognize grand mal seizures. However not many know how to recognize an absence seizure, a partial seizure, or a complex partial seizure – they may interpret the odd behavior as a characteristic of autism. Recognizing possible seizure activity is only one of the areas covered in this book which was the winner of the prestigious National Parenting Publications Award. (I like this book so much I also posted about it on Psychology Today).
This clearly-written book is by Caren Haines, RN who is not only a registered nurse, but also the mother of a 24 year old son diagnosed with autism who suffers from seizures. Caren makes the important point that often times medical professionals analyze the behavior of a person with autism as just being part and parcel of autism, when in fact most of us parents and wise educators have figured out that all behavior is communication. In some cases, a child or teen may be having subclinical seizures and instead of treatment is given a behavior plan.
Caren shares not only how to recognize possible seizures, but describes the helpful data for parents to collect for the neurologist looking to see if a silent seizure disorder is present. As well, Caren shares her son’s experience as well as that of other families, which helps the reader understand more about life with seizures. Dr. Nancy Minshew and Dr. Darold Treffert provide valuable information as well. Also included in the book is a very helpful chart of medical tests to identify underlying causes of autism that may influence the ultimate prognosis of autism.
An important fact that I always tell my audience when I present on the topic of Adolescents and Autism: Many teens on the spectrum who have not been diagnosed as having seizures earlier, develop (or are identified as having) seizures during the teen years – probably related to puberty.
Parents should read this easy-to-digest book to understand more about seizures. It might make a big difference in your child’s life!
Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how, what and when to explain puberty to your growing child? Are you wondering what an ITP is and how to best prepare your child or student for adult life? Or do you just think his or her autism is getting worse? Then this three-part series taking place on Tuesday evenings September 10, 17, 24; at 6:00 pm – 8:00 pm PST (9:00 pm to 11:00pm EST) is for you. This on-line series, will be available from the comfort of your own home (no matter where you live).
Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this three-part interactive series on Adolescents on the Autism Spectrum costs $99 and includes:
- 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.
- 6 hours of training
- PowerPoints provided before the live training to help with note taking.
- BONUS: Opportunity to watch replay of training at a later date (convenient if you miss a session).
- BONUS: Opportunity to take part in Google+ hangout discussion with Chantal following the series.
Here’s what some past participants have to say about this online course:
“This was so informative. Thank you so much for sharing your knowledge and experiences. I’m looking forward to hopefully meeting with you in the near future.” – Danielle (educator)
“I just have to say that I’ve attended your classes before and I always leave with great information.” Rachel (parent)
“This is really informative and has just given me lots of things to think about and do.” Linda (parent)
“ I’m really enjoying these classes. They’ve been very informative. Thank you.” – Erika (parent)
To attend this class, register here.
September 10: Adolescence 101: The Teen Basics : Everything you need to know (but don’t know who to ask)
Topics to be covered include:
- 13 things every parent or educator needs to know about teenagers;
- 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, self-care, masturbation.
September 17: Adolescence 102: Relationships: It’s Complicated
Topics to be covered include:
- The notion of privacy and consent;
- Relationship boundaries;
- Introduction to sexuality;
- Self awareness;
- Self- regulation;
September 24: Adolescence 103: The Transition Years : Plan, Prepare, Practice for the Real World of Adult Life
Topics to be covered include:
- Preparing the transition to high school;
- the ITP- Individual Transition Program and IEPs;
- Teaching life skills needed for work and / or college including:
- Self-esteem; Self-advocacy; Executive functioning, Self-reliance;
- Building on strengths and the use of mentors.
The cost is $99. To register, go here.
The teen years
In early October I was invited by the Family Resource Network in Oneonta, New York to present for six hours on A Full Life with Autism: Preparing for the Real World. It was a pleasure to meet everyone there and I promised to post some resources here in regards to puberty, hygiene and sexuality. I have added a few in regards to bullying and abuse as well.
For those unfamiliar with my book on adolescence, there are many resources listed in it on a variety of topics. You might find it useful as a general guide: Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, And Transition Needs of Teenagers With Autism Spectrum Disorders (Penguin).
Please read descriptions of the following books on-line so you can decide which of the books would be appropriate for your tween, teen or students.
- Autism – Asperger’s and Sexuality: Puberty and Beyond, by Jerry and Mary Newport
- A 5 Is Against the Law! Social Boundaries: Straight Up! An honest guide for teens and young adults
- Taking Care of Myself – A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel
- The Girl’s Guide to Growing Up
- The Guide to Dating for teenagers with Asperger Syndrome
- Intimate Relationships and Sexual Health
Here are some resources in regards to bullying and abuse:
Hope you find these resources useful!
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.
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.
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
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
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
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
Living 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!
- 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.
- 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.
- 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.
- 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).
- 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!
- 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.
- 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.
- 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!
- 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.’
- 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.
- 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.
- 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.
- 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.