1. 3 Family
1.1. Travelling with a Child with Asperger's Syndrome
Angèle Desrochers: teacher and parent of a child with Asperger’s Syndrome

Traveling with a child can be a challenge. That challenge is multiplied when traveling with a child with Asperger’s Syndrome.  Planning is the key to preventing, or at the very least reducing, the child’s level of stress.  Here are a few ways of decreasing the stress and anxiety related to travel:

  1. Prepare a book with pictures of each step of the trip. Include a short explanation with each picture. This allows the child to read the book like a story and also helps ensure that every person who reads the book with the child uses the same language and presents the same details.
    • Review this book frequently before the trip.
  1. Navigate your destination’s Website so the child can ‘see’ where they will be going.
  2. Clearly communicate the beginning and ending of each activity (e.g. the flight, meals, performances, etc.)
    • Use different methods for illustrating the length of an activity. For example: a watch or a timer, the length of a television program or movie, a sand timer, etc.  
  1. Review the daily schedule every morning and allow the child to ask questions. This is a great opportunity to inform the child not only about the day’s activities, but also the order in which they will be occurring.  
  2. Bring along food the child likes, especially if traveling to places where the food is different.
  3. Maintain a certain daily routine.
    • Time for meals, rest and bed.
  1. Allow the child to bring an item that provides security or a few games or activity books.
    • Make sure the items chosen are permitted on board if traveling by plane.

The number of pictures to include in the book will depend on the activity, the level of detail the child needs and the amount of information they are able to process. If necessary, a book can be created for each part of the trip. This allows the child to review one part of the trip at a time, and for multiple reviews, as needed.

The following are examples of pictures to include in the book:

  • The airport: waiting area, baggage area, security procedures, and washrooms.
  • The plane and the flight schedule: seats, security procedures, and activities such as movies, music, snacks or meals that will be served.
  • Means of transportation once you arrive at your destination: bus, taxi, and shuttle service.
  • The hotel: lobby, elevators, and room.
  • The local area and activities: dining room, restaurant, beach, theatre, and pool.
  • Details about the return trip.

It’s understandable that a trip can cause anxiety for a child with Asperger’s Syndrome but it is important to provide the child opportunities to live new experiences.  In planning for a trip, it is imperative that the child knows as much as possible about the upcoming adventure.  


Key words: Asperger’s Syndrome, anxiety, travel, tips for parents

Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
1.2. When You Have a Child with ASD: Looking After the Rest of the Family

Tip Sheet

Susan Day Fragiadakis, M.A. Sc., ASD Consultant

Adapted from an article originally published in Autism Matters, Summer 2008, with quotes from Cindy Alves, Lisa Foxcroft, Anne-Marie Pap and Melanie Coulter.


When you have a child with special needs it is not uncommon for his or her needs to overshadow those of the rest of the family.  It is essential to remember that every family member has needs and to find ways to meet these needs.


  • You were a person with interests before you had a child with ASD and you need to find that part of yourself again
  • It is good for you and your family to realize they can survive without you for a few hours
  • You will be a better parent if you are happy and fulfilled


“I have been lucky enough to have the opportunity to act in our local community theatre. Taking on the personality of a totally different character has quite often given me a wonderful perspective on my own life. It is the classic example of ‘And I thought I had problems!’ ”

Keeping a Journal

  • A place to write your thoughts (ones you share with others, and ones that are just for you)
  • Your dreams, needs, wishes, hopes as a person
  • What you are thankful for, proud about from the day
  • It is not being marked so if you miss a day, don’t sweat it!


“Having a diagnosis of autism for my son has been a “blessing in disguise”.  It has truly changed my outlook on life. I had considered seeing a counsellor to help sort out issues with my personal life and the stressors of having a child with autism. Instead, I decided to compile a journal about me and my thoughts. 

Sibling Needs

  • All family members should have their needs met, not just the child with ASD
  • Siblings often feel guilty asking for undivided attention, but they need it and should have it
  • Many siblings become major supports for their sibling with ASD in adulthood, so it is important that they feel their needs were also met in childhood
  • Your other children can provide you with wonderful parenting experiences you do not want to miss!


“My daughter’s siblings have giant hearts and the patience of saints but they all need to have a day of what we call “special time” with one or both parents. Each year we take each child on an outing separately.”

Support from Other Parents

  • Professionals can be a great source of information, but other parents have real life experience 24 hours a day
  • Other parents can listen without judging since they have been there too
  • Parents can share positive experiences and honest opinions about services and professionals
  • You have someone who understands it is as important to celebrate the small victories as the large ones


“My suggestion to moms and dads would be don’t be shy. Find a friend who also has a child with autism and share your dreams, fears and hopes because we all have aspirations for our children. Let’s help them achieve their goals!” 

Maintaining Your Partnership as a Couple

  • Two heads (or set of hands) can make life easier - so if you have a partner it is important to keep your relationship intact!
  • You were a couple before children and autism entered your life, and you can be a couple still, you may have to sometimes make the relationship the top priority
  • If you are supported and happy it will help with the ups and downs of everyday life in navigating the world of autism


“As difficult as it is to not talk autism, the topic is off limits when my husband and I go out for dinner or an overnight stay.

Health and wellness are also important considerations.  While it may be a challenge, making an effort to get enough sleep, eat well, exercise and find ways to relax and de-stress are important for everyone’s well-being.



Keywords: Coping, Family, Parents, Siblings, Tips for Parents



Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
1.3. My Brother... Just Doesn't Fit In

By Michelle Tyler

My brother David is 42. He was diagnosed with Type 1-Juvenile diabetes when he was 2 or 3. Later on in his childhood he was diagnosed as “moderately retarded”, sorry for the non-pc term (this was the terminology of the time).

David has limited problem solving and decision making abilities and due to his health problems and autism he cannot live independently. He lived at home with our mom for all his life.

David has many lovely and positive qualities. He is very sociable, a sweetheart and has an enormous laugh. He loves cars and will remember what car you drove back in 1978 and all the cars after that. He also loves movies, Wii games, and Singstar. So, although he lacks important basic life skills; he can and will beat you in Wii bowling.

David is well known for his strict schedule. Trust me, you will be informed when it is breakfast, lunch, dinnertime and all snack times like clockwork. Briefly, when I was really little, I did not realize my brother was different. I thought everybody had a detailed list of instructions on how to use the toilet. Who knew the order of those steps was so important…! My mom would tell me that I would help direct David. I think that was code word for bossy! It really wasn’t until I was 9 or 10 going to summer camp that I realized how different he was. I hated summer sports camp. Instead of learning the fine art of T-ball I was fending off some serious bullies. I got my first taste of my role as the protector and really just how cruel kids can be.

So, as I progressed onto a lovely, thoughtful teenager, I dreaded family outings. I would try and hide if we all went to the grocery store. My brother was and still is quite loud, singing and yelling as we went down the grocery store aisles. I could not crouch low enough. That just wasn’t cool! I went to your stereotypical high school and my brother attended a vocational high school in a different city; which was great for him. He was still an outsider; but he graduated and went onto a work placement at a garage, which has turned into a permanent full-time position for 20 years.

Our parents divorced in the 1980’s. My mother continued as my brother’s primary care giver for all of his life. My mom took care of everything, from the mundane stuff such as balanced meals and hair cuts to outings with the group from Woodview Manor (for a respite weekend). My mother was the driving force behind my brother’s successes. She taught him as many life skills as he could absorb. My mother fought hard for many years for any opportunities David could have. She had the most patience of anyone I ever met. She unfortunately passed away suddenly in 2010. I was left with some very big shoes, which I could not fill.

I had to make many decisions. This was not the life I had envisioned. I thought one husband was enough to fill that criterion of 1.7 children! So, what were we going to do as a family? A lot changed for me when my mom died. I had to turn into a caregiver overnight; from sister to mother. I tried hard to keep my brother’s routine going; but I was slowly falling into a big dark hole.

One of my first concerns was to not kill my brother. This may sound like an obvious necessity but we had some issues with his insulin injections and poor David ended up in the hospital a few times. My mom knew how to tweak his diet and insulin just by looking at him. I did not possess these skills. So, after many painful finger pricks and swabs we got his glucose numbers under control. During this process I had been lost as a sister and became the primary care giver. My brother would try to communicate his needs but it always felt like an order. Some days I resented him; felt like his maid. I finally came to the conclusion I could not handle being a full time caregiver to my brother. I felt a lot of frustration, sadness and guilt. In the end we had to look into other living arrangements.

That is when we started our journey through Contact Hamilton (Children’s and Developmental services). There was hardly any paper trail. My mom was last in contact with them 10 years earlier.

We finally went for an intake evaluation, and even went through the painfully long new Developmental Services Intake Assessment. I thought I could take a breath. These people can finally help me. However after many tears and begging, we were still left with very few options. They were unable to place David at that time. He didn’t fit in.

We were instructed to look at nursing, retirement homes and secondary lodging homes. Nursing and retirement were out of the question; he was 40 and still working.

My husband and I viewed several lodging homes in Hamilton but these were not a good fit either. Most weren’t willing to take on someone with his diabetes, unless he was independent with his injections. During this time, my brother had to learn a lot of new skills. He now had mastered loading his insulin pens, delivering the correct insulin, and checking his blood glucose. These skills were all coming along but not enough for most of these facilities. And besides, I wouldn’t live in most of the places we looked at so there was no way I was going to let my brother live there!

Luckily, we were told about Dromore house. It is a special place in Dundas, Ontario that is a lodging home which is home to 6-7 other men with various disabilities. Most of the residents are dealing with mental health problems rather than autism disorders. They were willing to take on his diabetes and autism and work with me to find ways to help David continue some sort of routine, go to work and try to be happy again. We finally found a place where David fits in!

Now, this was a huge adjustment for him; he was leaving his home of 40 years. He would get angry, he would get quiet, he would slam his arms, slam doors at times, I think to express himself.

I begged for psychological counseling. The experts were all telling me due to his level of functioning it would be of no help. I was told it would really only benefit me. So, there was no help for helping my brother deal with his grief and coping with change. If he was higher functioning there might be a couple of programs but once again, he just didn’t fit in. I brainstormed with several other intelligent people and we tried a few things. One thing that helped was a photo album. We took pictures of the house, all the parts he liked and he could look at them whenever he wanted.

We had to pack up and downsize his things. This was a painfully slow process. We sat down and went through every car book, magazine, comb, and penny collection. I am no counsellor but I think it helped him have some sense of control and in the end we sorted it all.

One of the toughest situations was saying goodbye to his home he had known for 40 years. I started him off by walking around the inside of the house. We then followed it by pacing straight up and down the lawn saying good-bye to important items, e.g., “Good‑bye tree.” When David was done his ritual he came back to me, gave me a hug and asked why I was crying. He was perfectly okay; that process of letting go worked for him. I tried to follow his lead several weeks later but it did not work as well for me.

ODSP (Ontario Disability Support Program) and DARTS (Disabled and Aged Regional Transit) were other important issues that needed to be addressed. ODSP provides additional funding for David’s housing, diet, medication and transportation. Without this support the family is responsible for making up the difference or finding alternate funding. This process was pretty straightforward once I knew about the monthly paperwork and responsibilities.  DARTS is the transportation service out of Hamilton. David had been using this service for almost the entire 20 years he had been working. This is what enabled him to go to work. We were warned that changing his route to work might be difficult. Luck was on my side and they were able to change his route with little disruption in his schedule.

David did not possess a bank account. He is not a good money manager as my mom managed all his money. The bank eventually came back with an acceptable solution: a joint bank account. I now manage his money and his bills.

Ultimately my brother ended up with some support structures again. He was involved with Contact Hamilton again, social services, even had a bank account. He had more structures in place then he had had for over 10 years. Even though I had family and friend support, I felt really relieved that I wasn’t doing this alone as our mother did. Because, a lot of the time you do feel like you are alone and no one is listening. And if they are, they can only do so much.

I think my mom had given up on the system. I think she was still a fighter for his cause in the end; but did not know how to use what energy she had left. My biggest issue at the moment is working on my brother’s guardianship. Officially he does not have one. Originally a lawyer told me that this could be an expensive and long process. But since talking and listening to presentations at an autism conference I feel I can tackle this challenge. This designation will help me address his future healthcare needs. His diabetes will be an ongoing, progressive issue that I want to fully be a part of. I also cannot start an RDSP (Registered Disability Savings Plan) without this title. I want to secure funds for his future needs.

So, I guess the issues I would suggest to parents, caregivers, and others to think about are: what will be the future needs of your adult children be? How are you going to meet those needs? Where will they live? Are they going to be able to manage independently or dependently? Are their enough supports available and in place?

In my opinion, there are not enough appropriate living options for adults with autism and not enough social workers to go around either.

How to make it better? How to see those issues change? I am not sure. I think it starts with communicating. Discuss with the other adult siblings what your future wishes are and start to make plans. Set-up the infrastructure - continue to work on those important life skills, organize bank accounts, prepare your wills and prepare yours and your children’s Power of Attorney or guardianship.

I continue to be inspired by all the people who have helped me and continue to help me; friends, family and people who were strangers a year ago. People like Robin who works at Woodview, believes in everybody’s abilities and strives to see change happen and people like Josephine & Michael at Dromore House, who continue to monitor my brother’s day-to-day welfare. All these people continue to see people’s abilities and truly want to help.

As for my awesome brother, who didn’t fit in most places; now he is fitting in. I am so proud and amazed at how well he is adapting and coping and also of all the new skills he acquired. He may never be able to fully cope with all his losses but he continues to go to work, enjoy his new routine and be my brother again.


Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
1.4. Autism: A Sibling's Perspective

By Kathy Chorneyko


On April 3, 2012, my brother John and I had the great pleasure of participating in the sibling session of the 4th biennial Stages of Autism: Adolescence and Beyond Conference. We shared with the audience a bit of John’s and our family’s story which hopefully is summarized with some coherence in the paragraphs that follow.

Early Years

John was born on March 12, 1968, the third in what was to be a family of four children. At the time he had an older brother by twelve years, myself the older sister by five, with a younger brother to arrive two years later. My memories of John’s early childhood are somewhat hazy and as far as I recall nothing seemed amiss in the beginning but when John was around two, things started happening that weren’t completely usual. For example, he became particularly sensitive to loud noises and unusually frightened of seemingly innocuous things. There was one particular television commercial for laundry detergent that would send him running away in fear.

As John grew older other things became apparent: social interactions and the usual childhood group activities were difficult for him. On the other hand there were things he was spectacular at, like building with Lego® and remembering all sorts of minute details and facts. I recall a multitude of doctors and assessments and unfortunately a pervasive undercurrent of guilt put on our parents for John’s problems. To their credit, our parents weathered this well although I can only imagine now, after becoming a parent myself, the overwhelming stress and anxiety which they shielded us from. There was one particularly difficult family session where we were all observed from behind a two-way mirror. After a very short time, my parents packed us all up and left. In all likelihood these early encounters contributed to the very delicate trust they had for the psychiatrists, psychologists and social workers that were to come. It was the case also that there was a general lack of educational facilities/programmes for children like John. At someone’s well-meaning intention, my parents went to visit a suggested institute and while they never shared with us the details, my mother was particularly quiet for some days and finally made it clear to us all, that in no uncertain terms would John ever be in a place like that. It seemed to be a profound moment for my parents and I wouldn’t be surprised if it was then that they understood how they would have to closely organize John’s future.

So my parents spent countless hours and days investigating options for John, reading about different treatments and programmes, talking with a variety of professionals, non-professionals and basically keeping their eyes and ears open for possibilities. With their guidance and attentiveness, John completed high school, his last courses done in an adult school and by correspondence. They took him to the Mayo clinic for assessment and they have always credited the professionals there for finding, finally, a medication regime that seemed to work for John. To my knowledge, with some slight modifications, he is still on this combination today. My parents never gave up trying to help John in any way they could. During all of this, they involved us relatively peripherally and I suspect in many ways being busy with our own education and careers, we weren’t so interested to get more involved. However, the foundations of John’s care and the principle of how things should be in the future was communicated to us to some extent by their words but largely by their actions.

Adjusting to change

While our parents were still able, they felt that they should still look after things for John but age and illness spare no one. A number of years ago our father began showing signs of cognitive decline and our mother became his primary caregiver. Then she herself became unwell with a difficult to control cancer. She continued to want to do as much as she could for John despite all of these things and up until the last few months of her life, almost miraculously, she was able to do this. My parents had discussed with us arrangements for John and as siblings we had begun to think about what losing her would mean. Mostly though, we thought about financial/power of attorney/guardianship issues, which are tremendously important, but there are other things equally deserving of consideration:

Support for your sibling with autism as they struggle to deal with illness, aging and death. Seeing your mother or father very ill is not an easy thing for anyone and no less so for an individual with autism. How they come to terms with this and the grieving process may be different or the same but no less acute or deserving of a thoughtful, sympathetic and empathic approach. John and our family have been extremely fortunate to have the support of the Woodview Manor community.

Understand yourself in the context of your family. Taking on or feeling responsible for tasks that you don’t feel comfortable with might not go well in the long run. Up front, open communication about how you feel about issues with your parents and other siblings will help to alleviate pressures later on when the inevitable does happen. Also keep in mind that there are many ways to provide support within a family and no family is the same so what works for one, may not for another.

Make things fit for you as much as possible. Our parents did a great deal in organizing our brother’s disability benefits, drug and dental needs. After our mother passed away we had and still do have some homework to do about understanding how these things work, but mostly it has become a matter of making them work in ways that fit our routines and lifestyles which are substantially different from our parents. We can’t be our parents to our brother or sister, nor should we try to be. But we can aim to be supportive siblings in the best way we can.

In Conclusion

At the conference the panel was asked whether it would have been helpful to have other people to talk to who also had a sibling with autism. Certainly from my point of view this would have been very useful and hopefully the sibling panel is a small beginning in this regard.  



Keywords: Adults, siblings, planning


Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
1.5. A Good Life: Critical Success Factors for Adults with ASD

By: Christopher O’Connor and Patricia O’Connor 

In the next 5-10 years thousands of children with ASD will leave the school system and enter the world of adulthood. This should come to us as no surprise since the diagnosis has increased considerably in the past decade with the prevalence rate of Autism Spectrum Disorder (ASD) being 1 in 110. In Ontario, there are an estimated 100,000 individuals with ASD (Autism Ontario). The question in the minds of many parents and professionals now is how we ensure that our young adults lead a good life. The definition of a good life may vary from person to person and family to family, but most can agree that independence, meaningful relationships and employment would factor into the equation.

The following account/interview is from a middle-aged man with ASD that has been involved in life’s adult journey for some time now. It is the story of my brother and how he, with supports, has maneuvered life’s challenges in a formidable manner to experience an independent, dignified and meaningful life.

Background Information:

Christopher is 39 years old and he enjoys many different activities. His favourite foods are steak, spicy chicken wings, pizza, Chinese food and poutine and he likes to drink iced tea, Monsoon Mai Tai’s, Shirley Temples and beer. His schedule is a little different every day but usually involves sleeping in (since his job ends at midnight), seeing friends, doing household chores and taking part in some of his favourite activities: biking, fishing, swimming, computers, video games and movies. Chris loves dogs. He gets around by bike and by city bus.

Making his own choices is really important to Chris and he makes many of them every day. He decides who to spend time with and what they will do. He decides when he will do things and what food he is going to eat and how his day goes. He makes a lot of his own plans and decisions and that is the way he likes it.

Structured Schedule:

A structured schedule is necessary for all individuals leaving the school setting. Even though school may not have provided all of the skills that are necessary to undertake life’s next steps, it did provide structure. A schedule involving work, (volunteer, self-employment and/or competitive employment), community involvement, social relationships, leisure time and opportunities to reduce anxiety by being physically active are all necessary components of fulfilling lives. On many occasions, individuals across the spectrum transition from school into their parents’ homes full time. This can be devastating for all involved since apathy, malaise and idleness lead to depression and hopelessness. Once these patterns become the “new normal” they are difficult to change. It is essential that our young adults move into an active level of involvement outside the household with increasing steps towards independence. Chris has had this experience and it has been extremely beneficial.

Social Life:

Chris has 4 or 5 friends who he sees often. All of these friends have some challenges but they all live by themselves, in a supported living situation, except for two people who live with their parents. He sees one couple twice a week for supper and gets together with the others for biking, “hanging out”, going to the mall or going out for supper. He has known most of his friends since he was younger and he thinks friends are supposed to stick together, do things together and do favours for one another. He has had lots of disagreements with friends and he was not quite sure how they got resolved but they keep getting together.

He has had some bad experiences with people that didn’t turn out to be friends. Sometimes they borrowed money or his possessions and didn’t return them. He doesn’t talk to those people any more.


Chris has lived in 3 different places in his adult years. He has lived at home, at his “old place” for 13 years and in the place he is in now. He really liked his previous place since it was in a house and had lots of room: a kitchen, living room, bedroom, bathroom and a large porch. The landlord was good and Chris helped around the house with shoveling, garbage and odd jobs. The rent was cheap and he could walk to the grocery store and other stores, too. The new place is a bachelor apartment in a basement and is OK. It is farther from everything and really small but it is comfortable. He has had to store most of his belongings and would like to get them back. He does not want to move again because the last move was stressful but in the future he would like to get another place that is bigger and closer to work. He has been on a waiting list for subsidized housing for 4 years.

Community Involvement:

Chris has been involved in Special Olympics for most of his adult life. His main sport is Nordic skiing. He has competed at national and international levels and won two gold and two silvers in Saskatoon in 1992 and gold, silver, and bronze in Austria in 1993. He began skiing at the age of 6 and continues to ski weekly throughout the winter months. He loves to do it on his own and enjoys watching for woodpeckers and animal tracks. He also curls every Sunday during the winter months and sometimes the team competes out of town. Track and field, swimming and power lifting are other sports that he has been involved in.

Anxiety Reduction:

Medication has been part of his life for many years but the best things Chris does to keep calm are exercise, listening to music, seeing friends and sometimes being alone. He occasionally rides his bike for long distances. He is not getting any counseling at this point, but has in the past. He thinks that it is really important to keep a positive attitude.

When Chris was younger he had many sensory issues related to all modalities: sight, sound, touch and smell/taste. Malls presented huge issues with loud sounds, too many people and wide-open spaces. At 39, many of these issues have diminished but loud noises (such as babies crying) are difficult to cope with so he tries to ignore them and get away from the source of the noise. If he is at work, he leaves the room.


Chris has had many jobs since high school. These included: a convenience store where he stocked shelves; a restaurant where he washed dishes and cleaned; a police station where he worked as a janitor and was treated well by other staff; A truck stop where he washed dishes (he found this job stressful because it was very busy, never-ending and the people were sometimes hard to deal with); a pizza shop where he cleaned and made pizza dough and assembled boxes plus got a free meal every day and at a retirement home where he worked as a janitor and found the residents and staff friendly. Chris found all of these jobs through Community Living.

Currently Chris works as a janitor at the bus station. This is a regular job paying minimum wage. There are positive and negative things about the job. Some of the people can be very rude and he has to deal with mentally ill people and people who are drunk and stay there a long time. He knows some of them now and they are getting better but sometimes he has to get a bus driver/supervisor to help him out because he states that, “he is not great at dealing with the public issues”. Most of the bus drivers are nice and helpful except one that he has decided to totally ignore. Sometimes he has to clean up big messes as part of the job. There are lots of good things about this job. He gets to work on his own and he really likes that. He gets paid well and works part time. At a later date he may want to work full time, but for now part time work is OK. He likes his boss because she gives warnings about changes in the schedule and gives him really good holidays.

At every job, Supported Employment, through the Community Living Association has been available to help. The workers change frequently but if Chris has a work related problem he can go to them for assistance. Over the years, Chris has had some challenges in the workplace, but he has learned many social and communication skills. He is a hard worker, reliable and has a very low absenteeism rate all of which have contributed to his success. Other positive characteristics that Chris exhibits are determination, adaptability – now, courteousness, a friendly nature, honesty, optimism and sincerity.


Although Chris leads a very independent life, he has sometimes needed and received help from other people in a variety of ways. Mom helps him with lots of different issues that have happened over the years. She lives in the same town and Chris sees her every Sunday for supper. Chris likes to go on vacations to visit his sisters and brother and his niece and nephews. He texts them on a very regular basis. He goes to the cottage with his mom for two weeks in July and in August every year. Supported Independent Living (SIL) Program helps when finances, forms or household activities are causing difficulty. They come to the apartment once weekly to discuss and help him solve problems. Friends and people he knows will provide support if he asks for help.

Hopes and Dreams:

What are your dreams for the future?

“Maybe I’d like a full time job and a better apartment. I’d like to get a job fixing computers or something to do with computers in a computer store. I might want to get a scooter. I want to try scuba diving and see all the different kinds of fish, go swimming in the ocean and travel to some tropical place.”


After talking to Chris about his life it became evident that all human beings have the same needs whether or not we have ASD. We have a need to contribute to society, have friends and have fun. We have the need to be as independent as we possibly can and that makes us feel good about ourselves. The components of a good life for individuals with ASD are not difficult to understand but the supports and guidance required to ensure that this occurs is the key to success. These supports are often not available. As government supports diminish, and the number of individuals with ASD entering adulthood continues to increase, all sectors of society must find innovative ways to support this vulnerable population during this challenging transition. This will ensure that these capable individuals have opportunities to demonstrate their skills and live an independent, dignified and meaningful life.

“The best part of life is that I don’t have to worry about anyone but myself. I do what I want, when I want to and the best thing of all is that I am very independent.” Christopher O’Connor


Keywords: Adults; Job Skills; Siblings; Housing; Leisure; Strengths; Anxiety


Pat O’Connor has been involved in the field of ASD almost all of her life. She is currently focusing on consultation, coaching, advocacy, training and program development for young adults with Asperger Syndrome transitioning into life. Her company is Integrated Autism Consulting and she can be reached at patriciaoconnor@rogers.com.


Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
1.6. Tips for Coping With, and, Enjoying Your Kids

From a Mom with 5 Children on the Autism Spectrum

by Sylvie Charron

Sylvie, you seem uniquely qualified to address this topic. Please tell us a little about your family.

I have been blessed with beautiful, healthy children. My oldest daughter was born in 1998. She came as a surprise as I was still in university. She was full-term but needed some help coming out so she was born by caesarian-section. My second daughter was born 2 years later in 2000. She came to us at 40 weeks and had trouble breathing on her own at first. In 2001, at 18 weeks of pregnancy, I had a miscarriage. Fortunately I was blessed with another pregnancy soon after, so in 2002, I had my first son. He was born healthy but also by caesarian-section. In 2005, our 4th child, another son, was also born healthy although quite small.

In the spring of 2013 I had four children all of whom are on the autism spectrum ranging from mild to moderate. I felt very blessed.

In the summer of 2013 my husband and I decided to adopt another child on the spectrum. He came to us just before Christmas; a beautiful baby boy of 23 months. He didn’t have an official autism diagnosis but showed obvious signs. He currently receives a lot of therapy for his developmental delays. Now here we are with five wonderful children.

How would you describe your attitude or approach to raising five children on the autism spectrum?

Each has their own unique gifts and challenges and I wouldn’t change any of it for the world. Mostly, I see their ASD as a gift and, as their mother I make it my job to help them develop their gifts. It is not always easy for them or those around them. Sometimes that gift might look more like a curse but with a little time, some perseverance and a lot of patience, their gifts flourish.

The one thing I’ve never done for my children is to try to make them “normal”. For sure I want them to fit in and be happy, but as themselves. I always try to encourage their special interests by showing an interest in it myself. I also encourage all my children to show an interest in each other’s special interests. Usually, we all enjoy each other’s interests and develop a taste for a variety of things along the way.

The biggest rule in my home is respect. I taught them what it means to have respect for one another from a very young age and we are always working on it. By being respectful, they know that they can’t hurt each other physically or verbally. They also know each other’s sensitivities and quirks and so they work really hard to be mindful of them.

What are some other strategies that you have found helpful?

Something I’ve done in terms of their “stimming” (repetitive) behaviours is find ways to fill their need in a more acceptable way. For example, my son likes to rock himself and although this isn’t a “bad” behaviour in itself, my other children thought it made him look weird. To help him with this behaviour, we purchased a swing, which we put up in the house to help him get this sensory need met. It was an easy solution that worked immediately. Another example is for my two younger sons who like to spin themselves in circles. We found a large lazy Susan that we put in the middle of our living room. They love to lie on it to be spun or they sit and spin themselves. Again, this is an easy solution with immediate results.

I also try not to burden my children with unnecessary stressors. By that I mean no extra-curricular activities when they are young. Going to school is stress enough for them. They need down time to focus on their own needs and interests.

With children on the spectrum, routine and predictability are very important. It makes them feel more secure and calm. They also like to know ahead of time what to expect in order to be prepared mentally. In my home, I always tell the children ahead of time that a certain event will be happening. For example, even for mealtime I warn them at least 5 minutes in advance. When we need to go out for any reason I tell them at least a day in advance, and then provide reminders on the day of the outing. Whether it is a trip to the grocery store, the doctor or a museum, they all get advance notice. I find that the older a child gets, the more warning time he or she needs.

Can you explain a little more about how you do this?

In my house, there are calendars everywhere. The children all have their own where they mark down all their activities. They also mark their achievements, such as having a dry pull-up in the morning. We also have a family calendar posted for everyone to clearly see. It is a good visual strategy with the weekends clearly marked in a different colour. All events and outings are posted on this calendar. Also, after a day has passed, we cross it out. This helps with understanding the passage of time.

Something else I’ve always done with my children is to give them a run down of what is to be expected during a specific outing. For smaller outings, like going to church or grocery shopping, I usually do this while in our vehicle once we reach our destination. I make sure they understand before leaving the car. For a bigger outing, like a trip to another city, I go over it at least a month in advance, sometimes verbally, and sometimes with pictures. It all depends on the outing and which child I’m dealing with.

Limiting my children’s “screen time” is another strategy I find helpful. Their limits are clear and consistent so there is no room for confusion. Children on the spectrum seem to like logic and reason, so I explained to my children why there is a need for these limits. They might not necessarily be happy with the limits but they accept them.

Have you ever tried adjusting their diet?

I find it extremely helpful (and it makes our lives less stressful) to limit all refined sugars in our diet. When all my children were younger, we went completely refined-sugar free. It was very difficult at first but once I knew how to live without it, things changed for the better. We saw a noticeable improvement in the children. There was a dramatic decrease in meltdowns and aggressive behaviours. They seemed more in control of their actions and were more pleasant to be around. After approximately six years of being refined-sugar free, we started to reintroduce it slowly. The children are now a little older, except for our new son, and they seem to be able to handle it better.

Other things you have found helpful?

The children all have their own little place to hide or to escape to when they need time by themselves. My daughter has a little pop-up tent in her bedroom. My son likes to go in his closet. No matter where their spot is, I encourage it. When we go out of town, whether we are staying with relatives or in a hotel, I always try to find a couple of quiet spots for them to use if they need to. This helps everyone to stay calmer.

I also try to be prepared for the unexpected whenever I leave the house. I make sure to bring enough snacks and drinks, as well as some fidget toys. I’d rather be safe than sorry.

Where do you get support and help?

As for the role my husband plays in all this, well he is my friend. He lends an ear when I need to talk or vent. He loves his children but doesn't play a big role in the child rearing. When the children were smaller he was often away on business. Now he doesn't travel as much but he isn't around much to help out. He is always happy to do what I ask him to do but basically the children are my responsibility. This is fine with me because I was born with enough patience for both of us. I am always doing research to learn to be a better mother and better person. I attend workshops and courses to learn from and share ideas with other parents. My husband provides for us and supports me though it all.

Do you have some final words?

Finally, the last bit of advice I have is to enjoy your kids. You might be surprised at what you can learn from them. Just don’t sweat the small stuff!

Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
1.7. How do I explain autism to a sibling?

By Maureen Bennie, Autism Awareness Centre Inc., autismawarenesscenter.com

Siblings of children with autism play a unique role in the family. Important as that is, they are often the ones who get less attention, alone time with parents, and adjustments to make in their lives due to the demands of the child with autism. The key to family harmony is fostering an understanding of autism and the importance of the role a sibling plays in a child who has autism.

How to explain autism to a sibling is a question I am asked frequently. The answer to this depends on the child’s age and explanations will need to change as the child ages. Jean Piaget, a Swiss developmental psychologist, identified 3 stages in the development of concepts:

1. The Preoperational Stage – until age 7. Children do not use logic to formulate their thoughts but draw on their own experience to form an idea. Telling them theoretical information may not affect the concept they have formed in their mind.

2. Concrete Operational Stage – ages 7 – 11. Concepts still grow from direct experience, but varied experiences may be linked together because logical thinking is emerging. They can see they are variations on a basic concept.

3. Formal Operational Stage – 12 years and up. The child thinks more like an adult and they have the ability to use abstract reasoning. They can think about hypothetical events and information that they have not directly experienced or perceived.

Keep these stages in mind when discussing autism. Too often, we want to introduce information about autism to young children before they can process the information in a meaningful way. Here are some tips for telling your child about autism:

Early Childhood


  • You can’t catch autism.
  • It’s nobody’s fault.
  • He hasn’t learned how to talk yet.
  • I will keep you safe.


I think a good place to start an introduction to autism is through books about differences like Todd Parr’s It’s Okay to Be Different or Special People, Special Ways.

Middle Childhood


  • Autism occurs before birth or when they are a baby.
  • It is a problem in the brain.
  • It causes problems with talking, playing, and understanding other people’s feelings.
  • People with autism can learn but it takes a lot of work.
  • If your brother/sister is aggressive, it is my job to help, not yours.
  • You can help by playing and showing how to do things.
  • If your friends have questions, I can help you figure out what to say.


Good books for middle childhood are All About My Brother, Can I Tell You About Asperger Syndrome,This is Asperger Syndrome, Can I Tell You About Autism, My Best Friend Will, and Everybody’s Different.

The autism discussion should be an on-going one and not a one-time big discussion. Because of the 3 stages mentioned earlier, the sibling’s view of autism will be changing and new questions will emerge. I like these tips for autism discussions from the Siblings of Children with Autism:


  • Hear your child out before correcting errors.
  • Stay neutral and try not to judge your child’s answers.
  • Praise your child for sharing feelings and acknowledge that you understand where misconceptions about autism may have come from.
  • You want your child to feel comfortable speaking with you again.
  • Be prepared for intense emotions ranging from sympathy to guilt or anger. Try to remain neutral as a parent. Your child is allowed to have these feelings. Open communication will encourage more positive emotions.
Here is an idea on how to get the autism conversation started. “I realize we have not talked about John’s disability. Since he’s important to both of us, I thought we should learn about each others thoughts and feelings. Do you know what his disability is called?”


A thought about the adolescent years – the challenge will not be explaining autism because teens will do much of their own reading and research through the internet. What influences their understanding of autism is their own feelings around it. The challenge for parents will be helping the teenager understand what autism means for himself, his sibling, and dealing with the feelings that knowledge brings. One book I like for teens that is a positive read is Asperger’s Syndrome and Self-Esteem which is about historical figures who have been on the autism spectrum.

A final thought on this topic – if family difficulties continue to be a problem, consider family counseling. The sibling may require one on one counseling as well to help them through their struggles. Also look for sibling workshops.

1.8. Five Things To Do For a Family Dealing With Autism

By: Jonathan Alderson, Autism treatment specialist, founder/director Intensive Multi-Treatment Intervention, Harvard grad and author of the book Challenging the Myths of Autism

This article first appeared on HuffPost Living Canada online on 06/24/2014

 Your nephew, grandchild or work colleague's son received a diagnosis of autism and now you feel uncomfortable talking with the family about it? Or maybe your neighbour's daughter is autistic and you aren't sure what exactly you could do to help.

Believe it or not, it's fairly common for family and close friends to pull away. Whether because of discomfort or simply not knowing what to say or do, many parents caring for a child with autism feel isolated from people they once thought cared. Ironically, friends and family explain they are acting on their best intentions to "give the family space" and to "not impose" because the parents seem so busy.

You're probably right that they're completely consumed by the world of autism, but they still want to know that you're there. Forget the formalities. Reach out, communicate, and support them. An email, a voice message, or a text to say "I'm here and sending you love," even if unanswered, can be supportive in and of itself, more than you might ever imagine.

Keep in mind that on the other side of your voice message or text, these parents face incredible demands within a society that isn't designed for special needs. They weather inconsolable tantrums; they fight school system inflexibility, and act as interpreters to decipher their autistic child's language delay. It's extremely hard to find babysitters who can manage the different autistic behaviors. Toddler-parent-drop-in centers are often too loud for their sensory disordered children. Along with routine parent duties like changing diapers and cleaning up the daily breakfast tornado that hits the kitchen, many parents of children with autism also have to cope with sleep disorders, bed wetting into the teen years, and cooking special diet meals. This becomes their life. On top of earning a living, they coordinate intensive therapies that can run up to seven days a week. They pay for many of these therapies out-of-pocket which adds financial strain. It's exhausting.

But you can make a positive difference. Understanding more about their situation is a good first step. Don't be shy to ask the parents directly to explain more about the diagnosis and what kinds of challenges and triumphs they are dealing with. It's better to ask than to assume or to ignore. Online resources abound and I also recommend my recent book Challenging the Myths of Autism (Harper Collins) specifically because it provides research that cuts through negative stereotypes to offer a practical and hopeful reframing of this misunderstood disorder.

Over the past two decades I've had the honour to educate and train hundreds of parents of children diagnosed with autism. I think of them as all-star parents. There are hundreds of thousands who care for children with special needs around the world and at least a few in your very own neighborhood; each family has different resources, varying levels of support, and some are in desperate situations.

Here are some concrete actions that neighbours, friends, and family can confidently take to give these parents a boost of support.

5 Ways to Help and Be Supportive

1. Listen 

Much of their time with other adults is spent explaining about autism and their child. There is almost never time to chat about the latest movies, fashion, and other frivolous news. More importantly, with so much focus on their child, there is often no space for them to talk about what's going on for themselves. Spend time just listening, without an agenda, without giving advice, and without feeling sorry for them. Create space for them to let their thoughts and feelings out and to chat about whatever they need to express.

2. Let Them Sleep

Years and years of broken sleep because of their child's bed wetting, sleep disorders, and hyper-activity can have a serious negative effect on physical and emotional health. Offer to babysit for an hour or two at a time so they can just nap. Turn the TV down, close the bedroom door, and anything else you can do to create an environment for the parents to have a restful sleep.

3. Don't Judge

Have you ever thought to yourself that a parent you know should stop giving her child certain foods or that she should not let her child cry for so long? Like any parent, the moms and dads of children with autism are trying to do their best with a very challenging situation that they themselves are still learning about. They are doing their best to allocate limited resources. Everyone has an opinion looking from the outside in. These parents have almost always done endless hours of research and consulted professionals. Better to bite your tongue and give them the benefit of the doubt.

4. Be a "Typical" Friend

Over the years I have heard from so many moms that as soon as their child received a diagnosis many of their friends disappeared. Friends who used to call several times a week just to check in and to invite them for a movie or to a party stop calling. Friends assume these parents are overwhelmed, emotional, and don't want to be bothered. Even long-time friends can feel uncomfortable not knowing what to do or say about a child with autism. Instead of retreating, continue being that old familiar friend. A glass of wine with a friend and regular check-in phone calls can be just the right trick to balance the intensity of raising an autistic child. It's nice for a parent to know you are there to help when times get rough. But don't wait for rough times. Simply be a regular presence of friendship in their lives. If they need more or want less, trust that they'll tell you.

5. Be a Cheerleader for Even Small Steps

Cheerleaders encourage their team throughout the game and cheer even louder when the team scores points. Put your advice for an autistic child's parents aside and instead pick a project they are working on for their child and become the world's most enthusiastic cheerleader. It is reinforcing to be acknowledged for accomplishing a goal, but for many parents of children with autism the steps toward goals are mini and slow. Take the time to let them know that you notice their parenting efforts and the positive development you see in their child. In other words, be a cheerleader of the process not just the end goal. Call them or write a note and share a specific example of what they should feel good about. Maybe you notice their son is talking a little more or you notice their daughter is more attentive and listens better. Whatever the accomplishment, it can be reason to celebrate!

1.9. Making the Most of the Holidays for Your Family and Your Son/Daughter on the Autism Spectrum

Contributed by Cathy Pratt, Ph.D., BCBA-D, Director, Rachel Hopf, M.A., Graduate Assistant, Kelsey Larriba-Quest, M.Ed., Graduate Assistant, Indiana Resource Center for Autism

While many happily anticipate the coming holiday season, families of sons/daughters on the autism spectrum also understand the special challenges that may occur when schedules are disrupted and routines broken. Our hope is that by following these few helpful tips, families may lessen the stress and anxiety created by the holiday season and make it a more enjoyable experience for everyone involved. The following tips were developed with input from the National Autism Society, the Autism Society of Indiana, Riley Child Development Center, Easter Seals Crossroads, LOGAN Autism Learning Centers, and the Indiana Autism Leadership Network and are updated annually.

1. Preparation is crucial for most individuals. At the same time, it is important to determine how much preparation a specific person may need. For example, if your son or daughter has a tendency to become anxious when anticipating an event that is to occur in the future, you may want to adjust how many days in advance you prepare him or her. Preparation can occur in various ways by using a calendar and marking the date of holiday events, or by creating a social story that highlights what will happen at a given event.

2. Having decorations around the house may be disruptive for some. It may be helpful to revisit pictures from previous holidays that show decorations in the house. If such a book does not exist, use this holiday season to create a picture book. For some, it may also be helpful to take them shopping with you for holiday decorations so that they are engaged in the process. Or involve them in the process of decorating the house. And once holiday decorations have been put up, you may need to create rules about those that can be touched and those that cannot be touched. Be direct, specific, and consistent. We also realize that with some individuals, decorations may not be feasible. Create a visual schedule for decorating and other holiday events. See examples of numerous visual supports on our website at: https://www.iidc.indiana.edu/pages/visualsupports.

3. If your child has difficulty with change, you may want to gradually decorate the house. For example, on the first day put up the Christmas tree. On the second day, decorate the tree, and so on. And again, engage them as much as possible in this process. It may be helpful to develop a visual schedule or calendar that shows what will be done on each day. At the same time, it may also be helpful to inform them of the process for removing decorations. This process may be disruptive for some individuals as well.

4. If your child begins to obsess about a particular gift or toy they want, it may help to be specific and direct about the number of times a child can mention the toy. One suggestion is to give your child 5 poker chips. They are allowed to exchange one poker chip for 5 minutes of talking about the desired gift. Also, if you have no intention of purchasing a specific toy, it serves no purpose to tell the child that maybe they will get the gift. This will only lead to problems in the future. Always be clear and concrete about your intentions.

5. You and your child can make a list of what he or she wants for the holiday. The list could include the website where the gift can be purchased, the price, and other critical information. This list should be organized with a small box at the end or beginning of each item. The list can be shared with family members or friends who want to “register” to purchase gifts by putting their initials in the box.

6. Teach your child how to leave a situation and/or how to access support when an event becomes overwhelming. For example, if you are having visitors, have a safe/calm space set aside for the individual with their favourite items/toys available. The individual should be taught ahead of time that they should go to their space when feeling overwhelmed. Practice this strategy often throughout the year and when the individual is calm. This self-management tool will serve the individual into adulthood. For children who are not at that level of self-management, develop a signal or cue for them to show when they are getting anxious and prompt them to use the space. For children with more significant challenges, practice using this space in a calm manner at various times prior to your guest’s arrival. Take the child into the room and engage them in calming activities (e.g., play soft music, rub his/her back, turn down the lights, etc.). Then when you notice the child becoming anxious, calmly remove him/her from the anxiety-provoking setting immediately and take him/her into the calming environment. Make sure others respect your child’s need for space and do not intrude.

7. Teaching your child how to use a break card or some other signal by modeling or directly teaching this approach in advance may help your child communicate the need to leave when situations become overwhelming.

8. If you are traveling for the holidays, make sure you have the child’s favourite foods, books, or toys available. Having familiar items readily available can help to calm stressful situations. Also prepare them via social stories or other communication systems for any unexpected delays in travel. If your son/daughter is flying for the first time, it may be helpful to bring your child to the airport in advance and to help them become accustomed to airports and planes. Use social stories and pictures to rehearse what will happen when boarding and flying.

9. Know your child and how much noise and activity they can tolerate. If you detect that a situation may be becoming overwhelming, help your child find a quiet area in which to regroup. And there may be some situations that you simply avoid (e.g., crowded shopping malls the day after Thanksgiving (United-States) or Boxing Day (Canada). Again, a break card may be helpful.

10. Prepare a photo album in advance of the relatives and other guests who will be visiting during the holidays. Allow the child access to these photos at all times and also go through the photo album with your child while talking briefly about each family member.

11. In preparation for the holiday season, you might want to practice opening gifts, taking turns and waiting for others, or giving gifts to others. Use a visual turn taking card to help with this process. Role-play scenarios with your child in preparation for them getting a gift they do not want. Talk through this process to avoid embarrassing moments with family members. The New Social Story Book by Carol Gray (2010) contains a number of social stories on gifts.

12. If planning to attend a religious service, pre-exposure to the environment can be very beneficial for your child. When previewing the environment, practice routines that your child will likely encounter, such as kneeling, taking shoes off, sitting on benches, singing songs or praying. Religious services also mean having to sit for an extended period of time. It may be helpful to provide your child with a picture or written schedule of the program of events that you or your child can check off after each event is done. Fidgets and other quiet toys may be helpful to bring along to the service.

13. You might also choose to practice certain religious rituals throughout the holiday season. Work with a speech language pathologist or other professionals to construct pages of vocabulary or topic boards that relate to the holidays and family traditions.

14. It may also be helpful to prepare family members for strategies to use to minimize anxiety or behavioral incidents and to enhance participation. Help them to understand if your son/daughter prefers to be hugged or not, needs calm discussions, or provide other suggestions that will facilitate a smoother holiday season. If your child becomes upset, it might also be helpful to coach others to remain calm and neutral in an effort to minimize behavioral outbursts.

15. If your family member is on a special diet, make sure there is food available that they can eat. And even if they are not on a special diet, be cautious of the amount of sugar consumed.

16. Since holidays may place extra stress on a child, this may not be the time to introduce them to new demands. Your son or daughter may need the comfort of their routines. For example, try to maintain a sleep, meal, and other important routines.

17. Above all, know your child. Know how much noise and other sensory input they can take. Know their level of anxiety and the amount of preparation it may take. Know their fears, and know those things that will make the season more enjoyable for them.

18. During dinner, it may be a challenge for your child to eat at the same table as the entire family. Have options available. Realizing that the holidays are stressful, make sure that some of your son/daughter’s favourite foods are available during dinner. Again, this may not be the time to force them to try new foods.

19. If feasible, hire a respite provider or babysitter to be available during a section of the holidays so that other family members may be able to enjoy the day.

20. In preparation for the family holiday event, rehearse conversation topics in advance with your son/daughter. Develop a signal to help them understand when they should shift topics. Make a list of acceptable topics and a list of those they should not discuss. Practice this list in advance. Equally important is to prompt family members about topics of discussion that they can engage your son/daughter in and those they should avoid.

21. Holiday shopping may be stressful for your child with ASD when stores are crowded and noisy. You may enlist your child to be in charge of the list of presents or groceries, and have them help you find the items and check them off. As a reward, the last item on the list can be a preferred item, such as a candy bar from the checkout aisle or their favourite food from the mall food court.

22. Holidays are a time for the whole family to enjoy, but it can be tricky to keep everyone happy. It is important to make sure that siblings are aware of how the holidays can be stressful for their brother or sister with autism. Parents can remind their child of their sibling’s sensory issues, communication difficulties, or frustration tolerance and discuss with them how they can avoid potential triggers. While much of parents’ attention will be focused on having a successful holiday for their child with autism, parents can ask siblings about their favourite holiday traditions to ensure that these activities are special for them.

23. Adults with an ASD may want to purchase gifts for family members, friends, and co-workers. Some individuals may need guidance in determining preferences of their family/friends in order to decide what would be an appropriate gift. These individuals may also need help budgeting for gifts and planning out the steps to purchase the gift, wrap it, and deliver it appropriately.

24. Parties are frequent during the holiday season and involve many social (and unwritten) rules. As such, it may be important for adults with an ASD to review social etiquette when invited to another person’s home. For instance, perhaps he or she will need to check to see if they should remove their shoes at the door, or if they need to bring an appetizer, dessert, or any other small gift for the hostess. If the party is at work, some conversational topics might be off limits, and the expected dress code may be more formal. Therefore, it may also be beneficial to review what is appropriate for discussion or attire across different social settings.

25. Adults with an ASD may have certain food sensitivities. If so, it may be important for these individuals to remind families or coworkers what foods they find tolerable. In situations where these individuals have no control over the menu, it will be important to plan ahead by either eating before a social gathering or packing a snack.

Most important, remember to relax and not get unduly stressed. Your son/daughter may in all likelihood react to that stress. And most of all have a wonderful holiday season!

Hopf, R., Larriba-Quest, K., & Pratt, C. (2016). Making the most of the holidays for your family and your son/daughter on the autism spectrum. The Reporter, 21 (9). Retrieved from https://www.iidc.indiana.edu/pages/making-the-most-of-the-holidays-for-your-family-and-your-son-daughter.

1.10. A Perfect Square that Cannot be Broken

By Bill Gingras

When I met my wife Anne 26 years ago, it was an occasion that really should not have led to us being together all these years. I am 6 years older than she, I liked to partake in activities with alcohol, had a tremendous social life, large enough network of friends…all things Anne did not seem to have or do. And yet, it wasn’t long before we became an item, and both of our lives changed. I calmed down, she opened up a bit. We met, if not in the middle, then close enough not to matter.

I look back at the last paragraph, and knowing all the things I know now, I realize there were signs in abundance that I was in for a ride, had I the wit to know it. Autism, ASD, Asperger’s, all were words not even on the horizon of my mind. For me, I was with someone quirky, someone who draws outside the lines in life, even though on paper she could not do so. It wasn’t long until, as a couple, we realized our social life was going to change. When together, Anne and I craved our alone time, avoiding family functions when it was possible. But to us, this was typical, right?

We married in July 1992, and one year later had our first son, Alexandre. What a joy!! From the age of 10 I had always dreamed of being a father. A pirate, drag-racing, karate champion and secret agent father, sure...but ‘dad’ nonetheless. And I was living the dream. Having this child changed everything for us. Our focus was on him, and we became secondary.

And like most parents I know that have had to face up to the unavoidable initial terror and confusion that an Autism diagnosis brings with it. We stood like deer caught in the headlights of life.

Thankfully, Anne is an educator. Without her training, instinct, courage, and tenacity, there is no way our son Alex would have come as far as he has. The countless hours of therapy, of ‘good cop/ bad cop’ routines by Anne and me, she doing the dirty work on the floor day in and day out, performing IBI when there was no such thing, I being the guy who came home and tagged into the ring, Anne collapsing in fatigue while I got to do all the fun stuff, pretty much oblivious to what went on most days.

We were fortunate to have awesome schooling for Alex. He was educated in a caring, loving environment, one which worked effectively with us, that gave him the chance to grow, that brought him socially out of his shell. Enough so to become class president for grade 8. He inspired others with ASD to do things they were told they couldn’t. ‘If Alex can, we can!’ This continued through High School, then now College, a place we surely never dreamed he would go, given the severity of his first 6 years.

His brother Mackie, born 5 years later, was tremendously important in this catharsis in Alex. Mackie helped Alex retrace the steps of babyhood, we think helping rewire many a path and moving him along at a quicker pace. He has been an unwavering supporter of Alex, and we are very thankful to have him.

Lost in all this….is Anne. She is drawn to work with children with Autism. It is her gift. She has a patience for these special, wonderful people. And it is because of this and the contacts she has made in the Autism community that led her to get the best gift for herself: her official diagnosis of Asperger’s Syndrome.

I am not sure how much of a difference it would have made in our lives had we known sooner, although I am sure it would have been different. Not necessarily better. It took her 19 years of marriage to get this diagnosis, and on that day, it’s like all the pegs in our lives that did not quite fit in their holes shifted ever so slightly and dropped into place. We had answers to unasked questions. We now had the ‘why’ to many of the ‘wtf’s?’.

Four years have passed since this fateful day. Our lives are more complete. We give each other space, and I really have come to understand her in a way I may never have. Her anxieties, her social hindrances, her differences are no longer so. Because we now live our lives knowing what we know, we flow with the Universe instead of against it. Like-minded people in our lives have certainly helped the process, and helping others has kept us grounded.

We no longer fight for Autism Awareness. We now push for Autism Acceptance. My family, two with autism, two without, form a perfect square that cannot be broken. I wish this kind of acceptance on everyone!

1.11. 10 Ways to Make a Difference for Your Grandchild with Autism

By Jennifer Krumins

You are a grandparent! Nothing can compare with the boundless love that a grandparent feels for their grandchild. No longer limited by the need to juggle work, home, school and raising children into mature, self-reliant adulthood, the gift of grandchildren is one of life’s greatest blessings. But life doesn’t always deliver its blessings in the package we expect. The diagnosis of autism is for many a jolt into a new world; one that many have not even heard or at least have no knowledge of. Autism is a mysterious and heartbreaking neurological (occurring in the brain) disorder that occurs in 1 in 68 (CDC, 2015) children. It shows itself most prominently in impairments in language, communication, behavior and social relationships. For parents, the diagnosis tears at our hearts and brings the future crashing down, at least for a time.

This is where grandparents come in. You have awaited the news of your grandchild for months, maybe years and now the gut wrenching truth is almost too painful. Your children are suffering. What could be worse?

I know you want to help because you are reading this. You want to find a way to ease the pain. Your adult children need you. You cannot cure the autism or somehow make it disappear, even though you would love to. But you play a role that is critical and you have the power to make life more manageable for your children and your grandchild or you can undermine their challenges and exacerbate an already fragile situation.

Autism is not yet curable. But, time will show that it is not a “death sentence.” Life will find a “new kind of normal” and life will take on new meaning. There are therapies, education programs, and dietary considerations that will make life much more controllable for a person with autism.

So, you want to play a positive role in the life of your grandchild with autism? Here are a few tips that will certainly get you started on the right track:

1) Avoid judging or blaming anyone or anything for your grandchild’s diagnosis

When a negative experience befalls a person seemingly randomly, it is only natural for one to want to attribute the unfair event to a particular source or individual. In the broader picture of your grandchild’s emotional, physical and intellectual growth, however, negative energy is simply wasted energy. On the flipside, positive energy encourages one to learn about, understand and accept one’s reality, which can only help your grandchild to grow and thrive. Support your children in their efforts to come to terms with and negotiate this challenging path.

Listen, affirm and avoid offering quick judgments and /or solutions. What parents need most is to be supported and to feel affirmed that they are good parents and they will be able to cope; they are not alone.

2) Remember to view the disability in perspective

Your grandchild’s diagnosis is only one facet of her. True, it does impact the way that she learns, views the world and perceives herself in relation to others. But it does not define the whole child.

Your grandchild has a unique personality and abilities, strengths and weaknesses that are hers alone. Your ability not only to view your grandchild as a whole person but to validate her worthiness via your actions and relationship with her will also do wonders for her self-esteem, which is largely contingent on the reactions of others and the ways in which they relate to her.

3) Respect boundaries as a grandparent and remember that you are not the child’s primary caregiver

Support your children in their efforts to come to terms with and negotiate their challenges and offer an attentive ear. What your children need most is to feel encouraged and validated in their roles as parents. Accordingly, do not offer them unsolicited opinions, research or advice. Trying to convince your children to follow a certain therapy, forwarding links to various websites, or pointing out potential treatments for your grandchild’s condition may be interpreted as a lack of faith in their ability to raise their child and find the necessary resources and solutions that he needs. No matter how well-intentioned, offering unsolicited parenting advice will only undermine their authority and cause them to feel increasingly frustrated and insecure at a time when they are already quite vulnerable.

4) Adhere to the limits and schedules established by your children

While many grandparents are quick to throw routines out the window as a treat for the children in their care, raising a child with special needs often demands strict adherence to structure and routines which are essential for the proper functioning of both the child and family. Children with disabilities may have trouble coping with changes in schedules, food, sleeping arrangements and toileting, for example, particularly when they are away from home. Follow dietary restrictions, bedtimes, communication guidelines and other routines enforced by the parents, no matter how odd or tedious they may seem.

5) Don’t play therapist

While it is tempting to use the time spent with your grandchild to hone a specific skill or introduce a new intervention, your role in interacting with the child should be strictly that of grandparent. Chances are that your grandchild already has a variety of therapists committed to addressing her various needs. Trying to be both grandparent and therapist compromises your unconditional relationship and communicates to the child that you are not accepting her current reality. Your grandchild should look forward to time spent with you, rather than equate it with aversive feelings. Moreover, various physical therapies can pose potential injury risks if not performed by skilled professionals.

6) Encourage your grandchild’s independence

Help foster your grandchild’s self-esteem by providing opportunities for him to do things for himself, with your guidance. While the temptation is to want to facilitate everything for our children with special needs, being overly nurturing can sabotage a child’s chance to learn independence and feel the senses of accomplishment and pride inherent in mastering a goal on one’s own.

7) Provide your children with respite opportunities

Offer to watch your exceptional grandchild for a few hours in order to afford your children a chance to unwind and reconnect with each other and/or their other “typical” children. Your children may have unwittingly placed their marriage and mental health on the back-burner for a while in order to respond to the full-time demands of raising a child with special needs. Opportunities for relief contribute to the entire family’s well-being. A homemade meal or a house cleaning can also go a long way to ease stress and free up a bit more unscheduled time.

8) Offer financial assistance where possible, if you think it will be accepted graciously

The education savings plan that you may have begun for your grandchild may need to be used earlier than expected. You may wish to defray some of the exorbitant costs related to the child’s care, including therapies, programs, resources and respite care. Gift certificates for movies, dinner, spas, and fitness clubs are also a creative way to “force” parents to take time for themselves.

9) Spend time with the siblings of the exceptional child

So often, home life is centered on the child with special needs, causing siblings to get lost in the shuffle. Special days away or planned activities with you will give siblings the relief they need from a busy household and communicate the importance of taking time for oneself. Your undivided attention will also validate feelings of self-worth and highlight the fact that they are equally as special and loved as the exceptional child.

10) Communicate to the child with autism with short direct sentences and use written words or pictures when possible

If you want your grandchild to do something, it is best to state it specifically rather than ask a question. For example, instead of asking, “Do you want to rake the leaves with me?” it is more likely that you will get a positive response if you say, “Come rake the leaves with me. You can help me.” Avoid being loud, talking quickly and giving multiple steps. Your grandchild will most likely not be able to process all of your verbal instructions and they may ignore you or become very agitated. Pictures, lists and diagrams are often far more meaningful to most people with autism than are words. If your grandchild is upset or seems to lack understanding of something, it is useful to draw a picture/diagram, list the steps that will happen or use a picture schedule. For example, a list might say: 1) Play at park. 2) Snack. 3) Brush teeth. 4) Bedtime. OR even more specific: 1) Eat snack. 2) Brush teeth. 3) Read story. 4) Sleep.

While learning that your grandchild has special needs may initially evoke natural feelings of loss and helplessness, trust that you can have a deep and life-changing impact on your grandchild and his or her family, by offering the support that all need. You have the potential to make a huge difference whether you are physically near your children or not. Support, affirmation and love are what will get your child’s family through the challenge of raising a child with autism.

Jennifer Krumins is a parent, teacher and the author of three books:

Been There. Done That. Finally Getting it Right. A Guide to Educational Planning for Students with Autism: Lessons from a Mother and Teacher.

One Step at a Time: ABA and Autism in the Classroom; Practical Strategies for Implementing Applied Behaviour Analysis for Student with Autism

Autism and the Grandparent Connection: Practical Ways to Help and Understand your Grandchild with Autism

Please feel free to visit Jennifer’s website at www.autismaspirations.com or email her at krumins@autismaspirations.com.

1.12. When Living with Your Parent is No Longer Enough

Sometimes, in spite of our wishes, parents face a complex reality that lead them to make one of the toughest decisions they will ever make. I share with you my account of having to place my son in a group home.

A little background:

My son M. has needed a lot of support from a very young age. He was born with a cardiac malformation for which he underwent surgery the day after he was born. He developed epilepsy at six months of age. Delays in his development were evident around one year of age and he received a diagnosis of autism when he was three and a half. It goes without saying that M. required ongoing medical follow up. M. began showing aggression from two and a half years of age, in large part due to the fact that he could not communicate his needs and the seizures he experienced (many per week).

From a very young age, M. received services from many agencies, Surrey Place Centre, Geneva Centre for Autism, Holland Bloorview Kids Rehabilitation Hospital and a variety of disciplines, occupational therapy, speech and language, physiotherapy, specialists in behaviour and Applied Behaviour Analysis (ABA). He was also one of the first children to receive Intensive Behavioural Intervention (IBI).

It was evident very early that M. required a specialised classroom to meet his many complex needs. He was in the same special education class from junior kindergarten to grade 6. Aggressive behaviour increased significantly in grade seven and this class could no longer meet his needs. At this point, we made the decision to change schools. M. transferred to a specialised class in a treatment centre, which was not only a change of schools but of language as well, from French to English. M. is still at that centre and will be until age twenty-one.

Moving to a group home:

By fifteen and a half years of age, M’s aggressive behavior became increasingly difficult to manage, in spite of all the support he received at school. Discussions were focused on whether M. could remain a student at the school. I was asked to connect with a local agency to explore additional support at the school. Eventually we (parents) were encouraged to consider placement in a group home and advised to explore the process involved. My first reaction, as M’s mother, was total refusal. I explained that M’s father and I had no intention of entertaining that option until M. was twenty-one. We were then strongly encouraged to start the process immediately given that it is a very long process and spaces are very limited, even more so in adulthood. Reluctantly and with heavy hearts, we started the process all the while telling ourselves it would take years and the situation could possibly get better. I communicated with the Special Needs Team at Delisle Youth Services, Toronto, where the social worker began compiling the file. All the while, many serious incidents occurred which put my safety at great risk. This sped up the acceptance of our case. Within six months, a placement was offered in our own city. This is unusually fast! As a mother, the idea of my son leaving our home and having to admit that the situation was not only complex but potentially dangerous tore a hole in my heart. After visiting the group home and many meetings with the director, we accepted the placement. M. was only sixteen when he moved out. Without a doubt, this would be a very difficult move but with a good transition plan and lots of communication, M. coped with this change well.

Important to know:

Documentation is key to preparing a case for placement. It is imperative to keep all reports and communications about services received from the beginning, in chronological order. The social worker will need all this information when compiling a file.

It is normal to resist the idea being presented because, as parents, we hope to be able to care for our children ourselves and for as long as possible. For me, it was not natural that a child be raised by someone other than his/her parents and in a setting other than the family home.

The guilt is very intense and this is normal. As I put paper to pen to share my experience more than three years later, I still feel the guilt. I have adjusted to the situation but there remains a constant tug on my heart strings, in particular on Sunday night when I drive him to the group home.

Children in residence remain our children! Decision making power remains yours. You are involved at all steps along the way. It is important to stress this from the beginning. I continue to go to all specialist appointments, school meetings, etc. I get calls on a regular basis asking my opinion about various matters. No decision is made without our approval. It is up to you to remain involved in your child’s life.

No one knows your child more than you! It is important to share the strategies you use with your child, strategies related to how to calm him or her, their nutrition, sleep habits, sensory needs, etc. What really helped was the “How To” guide I created, full of details and strategies related to all aspects of M’s life.

Become an intricate member of the transition plan. It is essential to speak for your child. Explain the pace and frequency you envision for the visits to the group home. You know your child, what they can handle and how long it may take to adjust to a new environment. Take the necessary time.

In our situation, M. comes home every weekend. We pick him up on Friday evening and bring him back on Sunday night. He spends holidays, school holidays and many weeks in the summer with his parents.

Some highlights:

  • M. has made great gains in terms of his independence.
  • He eats a greater variety of food, due to eating with others at the residence. Nice influence!
  • His behaviour has improved significantly, in particular tolerance related to transitions and changes.
  • He has the opportunity to socialize and learn to live in the community through the many activities organized for the residents.
  • M. receives constant supervision, even a night (due to his epilepsy), which is something I could not offer him. This allows me to “recharge my batteries”, have more energy for the weekends and appreciate our time together.
  • Having a whole team care for my son during the week has helped to significantly reduce my level of stress. I go to work without the dread of waiting for the urgent calls at all times of the day. My quality of life has improved and I am able to pursue some of my own interests.

When M. turns twenty-one, is no longer at school and facing a very limited number of day programs, he will be able to remain in the residence during the day while waiting for a spot in a program able to meet his particular needs. Without this support, I have no idea what we would do without access to programs.

In conclusion:

In spite of the very difficult moments we lived throughout this process, today I am confident that we made the right decision.