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!

Are Glee Writers Using the Autism Community to Improve Ratings? 6

Read what one blogger said, crown_of_weeds: Sugar, Self-Diagnosis, Appropriation, And Ableism: So Here’s What You Missed On Glee. Do you think they really are using the autism community for ratings? Is this really what our society has come too? I hope not. I really hope the writer did not understand.

Here is an excellent summary of different views in the autism community Debate Heats Up: Is Glee Making Fun of Asperger’s? | Child Mind Institute. There are people within the autism community who do not understand Asperger’s and there are professionals like Allen Frances who make things worse with this What’s A Mental Disorder? Even Experts Can’t Agree : NPR. Is it any wonder that girls on the high-end of the autism spectrum do not get the support and understanding they need?

Here is part of a comment I left on a blogger’s post this morning, “The news media, celebrities and others fight for the rights of sexual orientation, color, religion and even more severe forms of autism and other disabilities including Down’s Syndrome. Most people know what Down’s Syndrome is and most have heard and some are even getting that sexual orientation is not a choice for many. Yet even members of our family fail to understand my daughter. I have left churches that condemned other religions or those who petitioned against same-sex marriage so while your assumptions are valid, you made a leap that missed the mark when you assumed ‘tolerance has to be tailored to fit YOUR PARTICULAR disability or challenge.'” I speak out about injustices related to Asperger’s because people with a diagnosis of Asperger’s are a minority within a minority and girls with the diagnosis are even more of a minority. I speak out because the diagnosis is relatively new (1994), and it will no longer be used in a couple of years therefore, it is misunderstood more than most. Taking such a vulnerable group and making any type of joke at their expense is just wrong.

Please join my e-mail campaign to make a positive change if you agree with me. Find out how in my previous post Glee Needs to Apologize to Autism Community for Recent Episode.

Glee Needs to Apologize to Autism Community for Recent Episode 22

I hope all of you will write to Fox: askfox@fox.com to request an apology from the writers of Glee.  They require the following: In order for us to quickly help you, would you be so kind as to email us with the following additional details:

Your City:

Your Fox Station:

Your Zip Code:

Actual Channel Tuned to:

Cable or Satellite or Antenna?:

–If cable or satellite, your provider?

Type of Set Top Box Used (Name and Model if available):

Are there other times when the problem happens (like during another show or during local news)?:

Here is my letter:

To Whom It May Concern,
I am writing because I have a sixteen year old daughter diagnosed with Asperger’s.  She was diagnosed when she was ten and experienced severe bullying at school in fifth grade.  She has never been initially rude to her teachers, she has near prefect pitch and she is unlikely to request any special privileges especially about something that would call attention to her.  Imagine my reaction to the most recent Glee episode where a character named Sugar, “self diagnosed” with Asperger’s, was rude to a teacher, demanding special privileges including the right to be rude to the teacher, and to join the Glee Club when she is unable to carry a tune.
My daughter recently left a school she loved and had attended for ten years due to an intolerant teacher not understanding how having Asperger’s and the long-term effects of bullying made one assignment impossible for her.  She is still trying to adjust to attending an on-line school.  She misses seeing her friends everyday and in case you are wondering, yes it is possible to have friends when you have Asperger’s.  Her friends are open-minded, caring, and wonderful people.
Imagine how seeing Asperger’s be the brunt of jokes would make my daughter and others feel.  I hope you can imagine and you will request the writers to offer a public apology for all the girls like my daughter who deserve so much more from a show that they love and that has previously shown tolerance for others.  Please help restore my faith in this show and in your network by responding.
Most sincerely,
Sue Kam

aka D. S. Walker
authordswalker.com
Delightfully Different Facebook Page
Twitter: @dswalkerauthor

Teachers Please Inspire and Support Our Children 8

I left a comment on a blog back in April about what I would want to tell the teachers of tomorrow. This is what I said:

“Please remind them that they have a responsibility to help our children and judging them does not help anyone. Remind them that they have a choice to be an inspiration or a detriment to our most vulnerable children. Advise them that even when children on the autism spectrum are teenagers they are not typical teenagers and asking them to write from a typical teenager’s perspective is ludicrous especially if a simple change in the assignment can avoid problems. Please beg them to assume the best rather than the worse about our children and to be aware that other things besides the class itself may affect our child’s ability to complete an assignment. Wrong assumptions can and do harm our children.”

Good teachers are the ones who are supportive of those who struggle either academically or socially without calling attention to the child. They promote kindness and tolerance and they avoid making assumptions. They realize each child is unique and they do not assume they know everything about a child on the autism spectrum or with any other diagnosis just because they have known other children with the same diagnosis. They realize past bullying can take years to overcome.  My daughter was fortunate to have a few of these teachers. 

Then we have teachers that bully our children as indicated in Teachers Bullying Your Child? Dealing With Teacher Problems.  Now, I cannot fathom a teacher intentionally harming a child, but I know many hurt my child whether they knowingly did so or not.  I believe they actually contributed to the bullying even if they did not knowingly bully her.  This has to stop!

One more thing that needs to stop is teachers who fail to recognize how long the effects of bullying last.  The teacher who ultimately caused my daughter to leave her school told me she did not see how bullying that happened over four years prior could still be affecting my daughter.  I have said it before and I am still saying it, the bullying caused more problems than Asperger’s traits and sensory sensitivity combined for my child.  My daughter’s school let us down by their lack of understanding.  Teachers, counselors, and school administration all need to read this, New Study Shows Long-Term Effects of Bullying Tied to Empathy « Bullying Stories and this, Long term effects of Bullying in girls and boys – Child Psychology and Parenting Blog: Child-Psych.org.

P.S. I have offered my services for free to my daughter’s former school, yet so far they have not accepted this offer. Maybe they think I have an agenda other than helping them, I do not know. I keep hearing stories about the same counselor making the same mistakes over and over again along with more bullying stories. I have to wonder why they are unwilling to accept help.