Attitude is Key

July 25, 2018

Rebecca and Jeremy Sicile-Kira, high school graduation, June 2010

 

“Tell him every day that you love him, and that you know he is smart.”

This is what Jeremy, my then 21-year-old son, responded to a mother asking for his advice. She wrote to Jeremy, telling him she had a non-verbal 12-year-old, and she was worried about what he was thinking and how he was feeling. She wanted to know what she could do for him until he was able to communicate his thoughts.

Reading Jeremy’s response brought back memories. Every night for many years, while tucking Jeremy into bed, I would tell him those two important facts.  I never realized the positive impact repeating those words to him every night would have on his self-esteem. I just told him how I felt, just as I would tell his sister, Rebecca.

Jeremy is now 29, and communicates mainly by typing or points to letters on a letter board.  Despite his challenges, Jeremy graduated 8 years ago from high school with a full academic diploma (watch his  commencement speech). Jeremy’s success is no miracle; rather it is a story of hard work and commitment on the part of many people. The one who has worked the hardest is Jeremy. My goal for him was to reach his potential – whatever that was – and to be able to communicate with those around him.  Since graduation, Jeremy has co-authored the book  A Full Life with Autism (Macmillan) and is a gifted artist.

When Jeremy was little, we lived in France and in the UK. We had no early intervention; we had very little help or encouragement from the powers that be. Basically, I was on my own and I had to figure out how to help him. At first I just read to Jeremy and showed him pictures and tried whatever I could to reach him; then I tried different methods I heard about that made sense for him. But I always presumed competence and spoke to him as if he understood everything. I was convinced he did.

For the past 15 years  Jeremy has been able to  type and communicate about his life and what he experienced as a child, what  autism felt like to him, and in what ways the different therapies helped (or didn’t).   I have found out more about what was really helpful to him. Some of his comments are very specific, others are general such as this:

My mom saved me from a life of despair. Her attitude is the key to my success. She made me feel like I could be a success no matter my challenges. Basically, if it was not for my nice mom and great teachers, my life would not be worth living. They believed in me and that has made the biggest impact—more than the type of teaching methods used.

As parents and educators, we spend a lot of time talking about educational methods, but not much about attitude. Yet, when I interviewed people on different parts of the spectrum for my third book, Autism Life Skills, they, like Jeremy, often discussed the importance of their parents’ attitude to their success. Daniel Tammet, author of Born on a Blue Day, has this to say about his parents:

In spite of all my many problems, they loved me unconditionally and devoted themselves to helping me – little by little, day by day. They are my heroes.

The message is clear. Yes, we need the right educational environment for our children. And unfortunately, many children on the spectrum do not get much positive feedback at school or in the community on a regular basis. But if you are a parent, take heart in knowing that your child’s self-esteem benefits greatly from your loving and positive attitude. Knowing his parents are there for him, that they believe in him and in his ability to learn, can make a world of difference to a child’s state of mind.

Praise for A Full Life with Autism

May 20, 2012

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

May 13, 2012

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

May 9, 2012

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

May 5, 2012

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

Autism in the House? Keep Calm and Carry On

February 20, 2012

“ 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.

Johnny Depp and My 2012 Goals

January 9, 2012

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

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

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

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

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

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

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

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

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

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

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

What are you focusing on this year?

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

Best wishes  to you and your family for 2012!

Asperger’s Syndrome and why some adults may not have been diagnosed

May 26, 2011

This was first published in my “Ask Chantal” column of the Autism File.

Dear Chantal,

I am currently reading your book Adolescents on the Autism Spectrum,… I have a son who is 27 and throughout his entire life he has been different… Recently I have come to believe he is autistic. My girl friend who has a 13 year old autistic son, says she has always wanted to tell me that she feels the same way in the belief that he is of the autism spectrum, possibly Aspergers. He has almost all the symptoms. I am now in the process of trying to get my son into some doctors in Melbourne, FL who are specialists… He has been a struggle to raise with all of his illnesses and challenges. He has been with disabilities since he was 4. We have been seeing the same psychiatrist for 22 years and were going to the same pediatrician for 17 years. …Why has no doctor been unable to suggest this diagnosis? Help me please. I am very interested in knowing if you have any other books out for adolescents and young adults with autism and/or Aspergers?

Jamie in Florida

Dear Jamie,

It wasn’t until 1994 that Asperger Syndrome was added to the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) which is used for establishing diagnoses. It is only in recent years that Asperger’s Syndrome (AS) has become more understood and recognized by professionals and parents. That is why many adults with AS were actually misdiagnosed as children, often with bipolar, schizophrenia, OCD, and so on. You are right to look for a specialist experienced with Aspergers to ascertain if your son falls on the spectrum. Being properly diagnosed is useful for knowing why someone is the way he is and what strategies can be helpful in the areas in which he may have challenges.

My latest book, Autism Life Skills, based on interviews with adults on the spectrum may be helpful to you and your son to find out what many people on the spectrum say has been helpful to them. As well, you and your son may find GRASP a useful resource for more information.

Chantal

 

What IQ Tests Really Tell Us About Children with Autism

March 20, 2011

How to better administer psychological assessments to children with autism

This blog was first published on PsychologyToday.com on  March 19, 2011

In the past nonverbal children with autism were considered mentally retarded, and those who had difficulties in communication were considered intellectually slow. Now it has become more widely recognized that autism has nothing to do with intelligence.

Studies show that often children who are performing at grade level or above in school, have IQ scores that show them to have below average or even mentally deficient intelligence levels. IQ scores of children on the autism spectrum may not be accurate reflections of their innate intellectual potential.

For a child to perform to their ability on a standard IQ tests such as the WISC-IV and the Stanford-Binet, they must be able to quickly respond to verbal questions and have well developed motor skills. However, these are areas that are difficult for those with autism. In effect, these IQ tests do not tap the true cognitive ability of many children on the autistic spectrum, but rather tell us more about their communication and motor difficulties.

Children and teens with autism spectrum disorders are impacted by sensory processing challenges, and this as well can effect test results. A student may not be able to respond in a room with bright fluorescent lights or in an environment not conducive to someone with sensory processing issues.

Another reason why it is hard to know how much a person on the spectrum understands is that many with Asperger’s Syndrome may do well in answering test questions, but not necessarily realize how the information relates to them personally. For example, a middle school student may be able to tell you what he heard in health class, but he may not not understand or realize how this information (ie sex education) relates to him personally. For this reason, it is important that parents and educators ensure that students really have processed the information on a personal level.

It is important to remember that just because a person cannot talk does not mean that they are not understanding what is going on around them, what they are hearing in class, or reading in books. Conversely, just because a person sits in a class and can repeat to you what was said, does not mean he has internalized and learned it.

Joshua D Feder, MD, Child and Family Psychiatrist has these suggestions to make about administering psychological assessments :

• Think of all the sensory processing difficulties a child may be experiencing. For one-on-one testing, make sure that the room is quiet, has few visual distractions, and is not too brightly lit.

• Consider the difficulties of transitions for those with autism. Sometimes, clear explanations of what you will be doing together, what comes next, and what comes after, makes a big difference. Frequent breaks may be needed.

• Pay attention to regulation and co-regulation issues. Do testing with the child not to the child. Pay attention to joint attention and engagement, and find the balance between having expectations and trying to build rapport.

• Recognize that one-on-one testing may not show a child’s difficulties with same tasks attempted in the classroom. Children with an ASD may have been taught the ‘right’ answers, but ability to utilize the information may is limited. This is especially true with tests of pragmatic language that ask about what to do in social situations. Careful classroom and recess/lunchtime observations are an essential part of the evaluation.

• For younger or nonverbal children, it is important to observe what they chose to play with, and what they initiate in their actions. This initiation is often the key to finding what motivates them and what we can capitalize upon to help a child co-regulate and connect and move forward in social and cognitive growth

• For more verbal children, we often do not do projective testing with these children, however, the rates of depression and other secondary mental health problems are very high, and projectives often give us a way to understand the child’s experience of the world.

• There may be a lot of scatter in the subtests, so that more refined neuropsychiatric testing may be needed

The reality is, It’s hard to know how much a person on the autism spectrum knows because of the communication, motor, and sensory difficulties they may have, as well as the ability some have to repeat information that has not been internalized. All these things need to be considered when doing psychological assessments.

For more general information on Autism, read 41 Things To Know About Autism, and visit Autism College.

New to Autism? How to Cope

March 16, 2011

Recently, I posted a blog on the Autism College website entitled : “My child has just been diagnosed with autism, how do I cope with this?” Parents new to the world of autism usually have a tough time after getting the diagnosis. Parents learning to cope  may find the following tips helpful:

• First, acknowledge your feelings, and allow yourself to feel the emotions that are there. These emotions, may come back time and again, but you will learn to cope.

• Know that the emotions you feel as a parent of a child with autism, has been compared to the stages of grief that  person goes through when mourning the death of a loved one.

• Recognize what you are feeling and try to use those emotions to your benefit. If you are angry, use that energy to find out all you can and advocate for your child (just be careful not to take out your anger on those that are there to help you). If you are feeling isolated, join a support group. If you are feeling powerless, go on the internet and do some research to learn about what options you have for your child, or which advocacy group exists in your state (every state has one) for the developmentally disabled community.

• Keep in mind you are not mourning the death of your child, you are mourning the loss of your expectations. The child you have may not be the child you were expecting, but he still needs you and loves you.

• Reach out and find an autism support group in your area that can help you feel less isolated and can help you with information.

• Find out all you can that can help your child so you can make the right choices. Empower yourself with the knowledge you need to help your child the best way that you can.

• Take care of your self. Just like in an airplane where the flight attendant instructs you in case of an accident, to put the oxygen mask on yourself before you help your child; you come first. If you don’t take care of yourself, you won’t be able to help your child.

At Autism College, we can help you as we help other parents coping with autism. Our Parent Empowerment Course can assist with some information such as how to know what will help your child, and the affects of autism on siblings and grandparents. Our free Library will  grow and we are adding information you can use. Two of my books might be really helpful to you at this time: Autism Spectrum Disorders (an  ASA Book of the Year) and 41 Things to Know About Autism.

 

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