Allen Frances I Hope You Are Listening 12

The beautiful child who started me on this journey is fortunate to be very high on the Autism Spectrum, but that does not mean that she has had it easy. For years no one identified her sensory issues as causing any of her complaints about loud noises, strong smells, scratchy clothes, or bright lights hurting her eyes. No one understood how hard transitions were for her either.

We told her she was being ridiculous and made her feel guilty for things that she could not control on the advice of her doctors. Well-meaning teachers, friends, and even some family members did not understand her and some judged her and/or us harshly, so we do understand the isolation of autism and how it changes lives.

We are among the lucky ones, as we have a select group of friends who support us and who stuck by us during the difficult times. Our child is now doing well and I am sure she can accomplish anything she sets her mind to do. She has already overcome so much including bullying from a group of mean girls who did not understand her.

Therefore, I have asked myself if the upcoming change in the DSM, which is the diagnostic manual for diagnoses that are classified under mental health, really matters. Many of us are not even comfortable with autism spectrum being in the mental health manual at all since it is really a neurological diagnosis. Maybe all of this will one day be a moot point as doctors continue to try to figure out new ways to verify the diagnosis. Reference this article for more about this:
Researchers Discover Test That May Identify Autism Patients « CBS Boston – News, Sports, Weather, Traffic and Boston’s Best.

I seriously doubt that it matters much to us at this point. However, given how hard it was for us to get the right diagnosis, will removing Asperger’s Syndrome from the DSM make it even harder for others to get the right diagnosis? I hope not, but if Allen Frances had any thing to say about it, it may. See this synopsis from NPR’s “All Things Considered” for more about this: What’s A Mental Disorder? Even Experts Can’t Agree : NPR.

FYI: My child has not received any taxpayer-funded services and I know many others haven’t either, so Allen Frances is misinformed as to why families seek the correct diagnosis. I also know that my child’s sensory sensitivity is real because she can hear my conversations from two rooms away even with the doors closed and even when I whisper. People like Allen Frances make life harder instead of easier for those with loved ones on the high-end of the spectrum. Isn’t it bad enough that lay people already think Asperger’s is just shyness or social ineptitude without having people make things harder for us? I am fighting to get someone to notice my blogs and to understand and to help me fight intolerance, so children get the help and support they need. Yet, Allen Frances makes headlines and my little novel goes unnoticed.

God Bless All of the Delightfully Different Children of the World!

April 10, 2011 Update:
I finally got a chance to review the proposed DSM changes a couple of months ago. My daughter and Mia, the character in my novel both meet the criteria for level I autism under the new criteria. The best thing about the new criteria is that it includes sensory sensitivity traits for the first time. Still, it is unclear if doctors will continue to fail to recognize autism spectrum traits in girls. I hope they will not because I know the dire consequences of their mistakes.

The past few weeks have taught me that the effects of past bullying and years of being misunderstood before getting the correct diagnosis still linger. I have not felt as lucky although I know there is still hope. My wonderful husband is now fully on board to do whatever it takes to help our daughter. I ask that you help to educate others so other girls do not have to suffer the pain of being misunderstood by their families, by their teachers, by counselors, by doctors, and by their peers. We risk wasting the bright minds and talent of so many unless society changes to a place of understanding, patience and acceptance.

Do We Bully When We Strongly Disagree with Others? 3

People

I posted this on Facebook:

“I know many of my FB friends aren’t fans of President Obama, and he has let me down in some areas too. However, all of you have to admit that he and his family do seem to care. I love that he and Michelle instill the value of service to others in their children.”

Many of my Facebook friends are people I grew up with in the southern part of the United States, so I knew they did not like President Obama.  I expected some of the initial responses I received, but they were okay as I knew the sources and one of them was even able to joke about our differences of opinion.  She’s one of my best friends from high school, so it was all in fun and she even made me laugh.  I also knew the second person to shout out about my post well enough not to take it personally.  The third however I don’t know although we do have mutual friends.

Therefore, I was a little surprised by the post.  I’m not angry with her, on the contrary, I am grateful to her.  She allowed me to open up a dialogue that has been brewing for some time.  I really have a problem with the seemingly lack of attention that the bullying issue is getting in our country by the average person on the street.  Members of my family who know how important this is to me still don’t know how severe the bullying in our schools is today.   So when a relative stranger commented on the post about President Obama, it seemed like the perfect time to try again to get through to people.

I would be willing to bet that many of my friends and family aren’t even aware that my child has Asperger’s even though it shouldn’t be hard to figure out from my posts.  I also have not tried to hide, from my friends and family, that I wrote a book to teach tolerance of differences to try to prevent bullying.  Yet, only a few of them have acknowledged my plea for their help in getting the word out.

They are not alone; however, posts about anger at President Obama get more time on the live feed at Facebook than a plea for understanding and support to stop the bullying.  I think we need to really take a hard look at our values as a society.  Let me know what you think?

Unlike Life, Fiction Makes Forgiveness Look Easy 5

I love fiction because you can write things the way you wish they were.  You can create as much support as you wish were available for families struggling to understand a child’s differences.  Fiction also allows the child with autism spectrum to be presented in a positive light.  Too many times real life does not do this.  People judge harshly when they do not understand, and somethings cannot be taken back.  They can hopefully be forgiven, but forgiveness sometimes takes time.

Most people have trouble forgiving people who deeply wound them, but add the dimension of Asperger’s and multiply the time and effort it takes to forgive by ???  I really do not have an exact number, as like neurotypicals, every individual on the spectrum is unique.  The wounds are certainly deeper, but then I think bullying deeply wounds any child.  Yet, in my book, Delightfully Different, Mia forgives after a couple of years.  I want to be clear; I love fiction!!!

I put most of the responsibility for forgiveness on Mia in the book.  In reality, I know the child with Asperger’s has to see the parent forgive first.  This is not easy for the parent either.  When someone wounds your child how do you forgive?  It certainly is difficult!  That is why I really am grateful to Immaculee Ilibagiza for her example.

Time and infinite support help us to learn how to forgive.  It is not something that comes quickly.  It involves baby steps, three forward, five back, then three-step forward again for what seems like an impossible amount of time, if it happens at all.  It also involves love and patience and acceptance of why the process is so difficult.  Ideally, it involves the other person meeting them at least half way, if not three-quarters of the way repeatedly.  When this does not  happen the process can take longer.  There is still hope, but it does take time.

A friend once told me that it is too bad that we cannot have a do over with our first child, the way we can with a piece of pottery when it crashes.  I really do not want a do over, but I do wish I had done so many things differently.  I love my children the way they are, so I would not do either of them over even if I could, but I would do it differently with the knowledge I have now.

Delightfully Different is a work of fiction, so Mia’s mother did things differently than I did.  She also has two wonderful sisters, while I have none.  The point I am making is do not assume the book is about my family, it really is not.  There are similarities because I am the writer and we write what we know, but I can assure you none of the characters in my story exist in real life.

Therefore, this story is not like Look Me in the Eye or Running with Scissors.  It isn’t like The Curious Case of the Dog in the Night either.  Remember all three of these were about boys or men, not girls.  The only meanness is from the mean girls.  The only sadness is from “normal” life events and the frustration caused by misunderstandings.

The subtle traits Mia’s family and doctors miss are real traits of Asperger’s that are frequently missed especially in girls, the bullying Mia experiences really happens every day in our schools.  The rest is just a story that I totally enjoyed writing, and I hope you will enjoy reading.

I welcome your comments and after you have read the story, I welcome your reviews on the bookstore sites, as well as here.