Guest Author - Bonnie Sayers
As the single parent to two boys on the Autism Spectrum I started out by teaching Nicholas, the older son who happens to be higher functioning, about autism. Since Matthew is non-verbal we started with books that depict children with similar behavior and communication issues as Matthew.
The idea was to help Nicholas deal with being the sibling to someone with autism, before even tackling the issue that he too is on the Autism Spectrum. I wanted him to be able to share his frustrations about his brother and open up about what might embarrass him when on school grounds with his brother or out in public places.
There are groups for siblings, but since both boys are on the Autism Spectrum we really did not fit that profile when in actuality they are both siblings of someone with autism while being on the Autism Spectrum themselves. Here is a book entitled, Sibshops.
Ian’s Walk is the best book I have found that shows what a walk around the neighborhood would be like for someone similar to Matthew. I liked that the book is from the perspective of a sibling, so Nicholas could relate to the same feelings.
Andy and his Yellow Frisbee also comes from the siblings point of view with the focus on issues taking place at school. I knew Nicholas could relate to this since Matthew attended the same school for five years.
I even chose books that were about other kids named Matthew. My Brother, Matthew. I also made a purchase of Matthew’s Box, a book about a boy named Matthew with autism.
Russell is Extra Special is a book filled with black and white photographs of the family’s childhood with captions. Although this book is older, it is very easy to comprehend for those that are not familiar with autism. The images still show living with autism and how siblings and a family made the most of it by capturing it in pictures.
Views from our shoes shares from many siblings on having a brother or sister who has special needs. This is very inspirational and good to look back on through the years.
My brother Sammy is also narrated by an older sibling who shows the difference between his day and the day of his “special” brother.
Autism Through A Sister’s Eyes is a book I have read through, but never shared with Nicholas. I have yet to write a review on this book because of the way Asperger’s Syndrome and high functioning autism are profiled. I personally felt it was not accurately described and do not want my son to be confused by the terms. I do plan on reading this again since the sister was ten at the time this was written, so this might offer some insight to Nicholas who is also ten years of age.
Joey and Sam: A Heartwarming storybook about Autism touches on accepting a sibling with a disability and the steps he goes through to get there.
All these books are geared and written for children with artwork and images that are perfectly suited for the subject matter. I also purchased My Friend with Autism: A Coloring Book for Peers and Siblingsbut felt it was too childish and not really suitable for Nicholas to read. I would say this is more geared for the smaller child.
We joined a support group that focused on the parents in one room discussing issues relating to parenting a child on the Autism Spectrum with the children in another room attending to tasks with therapists in training. The concept was great but since the families were encouraged to bring siblings it was really crowded at times, and I felt my children were no longer benefiting from this group. This did give Nicholas an opportunity to be in contact with children of varying degrees on the Autism Spectrum.
The next contact with children on the Autism Spectrum was at the summer autism day camp Children with Autism Making Progress known as C.A.M.P. Here Nicholas was in a classroom with children who were also nonverbal. Over the years while at camp he has been in contact with children that are similar to his brother and also those who are higher functioning and have issues like his own.
This past summer he encountered a girl who had a behavior issue and was removed from his classroom and camp. He would tell me she was worse than Matthew. There have been times over the years where Nicholas has stated he wished his brother would talk. Having been around other children who are older, he knows that might not come to be, and I think he is getting used to that concept. He has observed other kids having screaming fits and flapping their hands like Matthew does.
With his weekly Social Skills Group he is working on goals that are specific to his needs that are part of his autism. If we had never experienced these other services Nicholas might be confused about autism when I explained to him that he also is on the Autism Spectrum. By being in the company of others within the Autism Spectrum he is now aware of the varying degrees of the Disorder and can understand that he too has autism, but it affects him differently than it does Mathew.
There are a few books on the subject that are workbooks for children on the spectrum, but they tend to overlap with Asperger’s Syndrome making it not necessarily useful for Nicholas to comprehend. I have not approached the subject of Asperger’s Syndrome.
I had purchased through ebay What does it mean to me?: A workbook explaining self awareness and life lessons to the child or youth with high functioning autism or Aspergers, but ended up selling since I did not feel it fit our needs. It is out of print, by Future Horizons, so the place to search for it is on eBay.
I do suggest reading Health Care Transitions for Youth with Disabilities and Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum For Young People With Autism.
A few weeks ago before school started I had to file an appeal at the Social Security Office. This had to be done within ten days so both boys had to accompany me to the local office. While I stood in line Nicholas and Matthew waited on chairs nearby. Matthew was busily eating from a bag of goldfish crackers and crinkling some papers he found. The security guard approached Matthew to tell him eating was not allowed. Nicholas informed the guard that Matthew has autism and cannot talk.
When a new security guard was on duty at the local library Nicholas was the one to tell the guard that Matthew always screams and picks many videos, as well as shakes Magazines. He told the guard he does not talk and has autism. Nicholas does not divulge to anyone that he has autism, but he understands that he has issues impacted by Autism and is getting support services as needed.
It all depends on the family makeup on when it is time to inform the child on the Autism Spectrum that they have this Disorder. I highly recommend reading some of the books I listed prior to reading through with your child. Many will produce tears as you read the similarities of those within the pages with your own child. Take the time to read through a book and ask for feedback from the child, what did they like or dislike in the book. Did they recognize anything on the pages, take note of the images and use examples from their day that are like those described in the book.
I personally do not believe in keeping the diagnosis a secret from family, school or the child. It is all about awareness and making the person with autism understand more about themselves to help them as they grow and become more independent. This all depends on the level of the child. At this point in time it would not make sense to explain to Matthew, although I have read through books with him and showed him pages trying to get a response from him.
Good luck to all those in this task of teaching the child on the Autism Spectrum about their Disorder. You might find out your child wants to write about autism as well.
Some other resources to help you make the step and tell the child about their diagnosis:
Getting Started: Introducing Your Child to His or Her Diagnosis of Autism or Asperger Syndrome IRCA article by Marci Wheeler, social worker
Making and sharing the diagnosis
Telling your child about their diagnosis The National Autistic Society, UK
A letter to the teacher this is a great example to follow
Having Fun With Idioms
Sea World- Feeding Dophins