Rachel B. Cohen-Rottenberg, Trail Blazer 4

Rachel, who runs the wonderful blog, Autism and Empathy, sent me a PDF copy of her latest book, Blazing My Trail: Living and Thriving with Autism to review a while back. This is Rachel’s second book about living with autism. You can view my review of her first, The Uncharted Path: My Journey with Late-Diagnosed Autism by clicking on the link. I knew I loved her second book after a quick look, but I wanted to be able to do a longer review and finding time has been an issue until now.

Rachel shares more of her adventures in self-advocacy, talks about harmful medications, and shares some adaptations that have made her life happier. This alone would make this book worth reading. However, the part of the book I love the most is the way she works to deconstruct cultural attitudes about disability and offers suggestions to our society at large about needed changes. Chapter six addresses this in detail although Rachel intersperses it throughout the book.

I love Rachel’s comment on page forty-eight, “I’ve come to understand that one of the primary reasons that disabled people are so ostracized and excluded in our society is that we remind everyone that life is a messy, fragile, difficult thing.” She determines that in many ways she is fortunate to face difficulties now as she believes this is better than having lived a charmed life only to find yourself disabled due to aging. She talks about life’s difficulties, but notes, “Difficulty is not the same as impossible!”

I found myself nodding my head in agreement many times as I read. Those of us who experience autism whether, as a parent or directly can tell you that naysayers are a part of life with autism. Another favorite comment is on page sixty, “There are people who will never understand that some things cannot be overcome by will power.”

Chapter five beautifully addresses the issue of asking for and receiving needed accommodations and the painful realities of abuse that some with disabilities also face. She quotes someone she met over twenty years ago at a support group, “There is no such thing as better or worse when it comes to abuse. Once someone forces us to cross that line, we’re all in this together.” Amen!!! Thanks Rachel for sharing this along with the Judaism teachings that we are all born and die pure souls and that our essential nature is not changed by events in-between.

Rachel addresses another conflict within the autism community too as she asks the question, “Do we focus on making autistic people ‘indistinguishable from peers,’ or do we work to build a world in which all the people who fall outside the realm of ‘normal’ have equal access and equal rights?” She is not saying do not help autistic children to find ways to communicate more effectively and to navigate the world, but rather that our attitudes about normality need to change too.

The final chapter addresses Rachel’s solitary path through life’s journey in a peopled landscape where at times we find support that strengthens us.  

Disclosure/Disclaimer: I reviewed this book from a PDF copy received from the author.  No other compensation, monetary or in kind, has been received or implied for this post. Nor was I told how to post about the book!

The Effects of Bullying: Robert’s Story 4

Join me in welcoming Robert to my first Effects of Bullying Series.

Robert’s Story

I’m convinced that schools and me were never meant to get on; my trouble with handwriting, spelling and mental mathematics caused a lot of grief. But there was something else present every day, which I detested more: break time.

For me, someone who likes to be forever mentally engaged, break time was the dullest thing ever invented. The other children would talk and play team games like football while I sat in an alcove in the corner of the playground, avoiding the missiles, waiting for the bell to go back inside.

Around nine at the time, an undiagnosed autistic, my interests lay in creativity and making things. I began bringing my creations along with me. So rather than hiding in the corner doing nothing at all, I would work on one of my projects. That’s when the bullying started.

I no longer remember many of the details, but a few students decided that it was a good game to steal and smash-up my creations. Or when they could not steal my stuff, like in class, they would threaten to smash-up my creations, doing hand gestures across the room, like snapping a ruler between clenched fists.

These things represented a great deal of time and effort and I was working with very limited resources and almost no money. Materials and tools were sacred, I worked mainly with what I could find around the house. Breaking, or threatening to break my creations was like breaking a part of me. None of these things could be easily replaced.

Like typical British primary schools, my school was very small; avoiding the bullies was not possible. Nothing the staff did made any noticeable difference and the only friends I had at the time, while great technically minded individuals themselves, were also targets and could do nothing to help. I felt trapped with nowhere to go.

A ray of hope I had been the move to senior school; a completely new set of people and nobody knows me, a chance to start over. The reality was the opposite, even though I had moved beyond lugging projects around a new set of bullies picked up my differences and the bullying started again, but worse.

Instead of focusing on my possessions, this new set of bullies started attacking me personally, kicking, punching and verbal abuse. I was terrified to go anywhere alone, hid in the Special Educational Needs room over breaks and lunch and refused to go anywhere without a support worker for protection.

Combined with the increased demand on handwriting, this meant I was always on edge, always looking for an escape route if something went bad and always ready to meltdown. Unfortunately the latter happened rather a lot, drawing more attention to my differences and making the problem exponentially worse.

These problems and the bullying continued relentlessly. Finally getting a computer eliminated my writing difficulties but the problems only really stopped when I eventually left school and went to college.

Anxiety, fear and constant observation of the environment; always looking for danger, are often cited as symptoms of mild autism. But my own experiences say something different, they are side effects of a difficult childhood.

I have never completely recovered from the bullying in my childhood. While I have been able to overcome my fear of going out alone, I am still very shy and have had no friends to speak of since primary school. My interests and current projects are kept to myself and I’m more likely to accept something as given, or just avoid it altogether, rather than argue.

It gets easier, slowly.

Coping With Emotional Scars of Bullying 1

Mia Lung is a character in the novel, Delightfully Different. ©D. S. Walker

Mia Lung is a character in the novel, Delightfully Different. ©D. S. Walker

The following is an excerpt from my book, Delightfully Different. Mia is talking as she tries to heal from the emotional scars bullying left.

Part of me wanted to become an advocate for all of the kids who were delightfully different like me. Delightfully different was what Mom called me. I still wasn’t brave enough to speak up. I didn’t trust people enough yet. I wanted to believe there were good people who would understand; unfortunately, our society seemed mean to me. There were TV shows where people ambushed their “friends,” so they could tell them how awfully they dressed. There were people who posted things on the Internet about my generation. They said, “This generation needs to get tougher. Their parents overprotect them. There has always been bullying of kids who are different.”

They said that those of us who were different just needed to learn to fit in, as if it were our fault that we were mistreated. They didn’t think that society should make accommodations for us at all. They implied that our sensory issues were something that our overprotective parents invented. They even blamed our parents for our sensory issues.

Our society was advancing technically, but it was returning to an age of barbarians in terms of the way we treated others. Honestly, what gave anyone the right to judge what I or anyone else wore? Why should I have to be just like everyone else? More important, why would I want to?

Mia’s mom explains to her that she has to learn to forgive to avoid becoming the mean one and I firmly believe this is true.  I hope once people are better educated about how bullying affects those on the Autism Spectrum, that others will come to the aid of the victims, and support them the way they currently support kids who have a physical illness or injury.  That is my dream for the future.  For with understanding and support, I truly believe we can eliminate bullies or at least eliminate any power they have to harm others.

Promoting Acceptance of Differences

Today I read an article from The Salt Lake Tribune about an amazing person named, Dora Raymaker who happens to have an autism spectrum diagnosis.  She gave insights as to how important the people in her life are to her, and she also noted that the misconception held by some, that those on the spectrum don’t have feelings, leads to a lack of accountability for atrocities committed against people on the spectrum.  See the link to this below:

http://www.sltrib.com/sltrib/home/50340283-76/autism-experience-autistic-relationships.html.csp

I hope to change these notions by educating people about how amazing those on the spectrum can be, and by emphasizing the importance of holding everyone accountable for their actions.

EarthMy ultimate goal is to change our world one person at a time to a place of acceptance of differences, so that all people can reach their full potential.  I know that just because someone expresses themselves differently, it does not mean they don’t feel just as deeply as those of us who cry openly.  Please help me to pass on the message of teaching tolerance.

Mahalo,

D. S. Walker