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.

Save Your Violins for the Orchestra 2

Save your violins for the orchestra.

Save your violins for the orchestra.

Please no pity parties for my family or Mia’s. We happen to know the wonderful traits of autism spectrum, and no it isn’t really a “disorder.” The only disordered group we know of are the bullies. They may not carry a diagnosis with the word disorder included, but they are the ones who have a disorder all the same. I say prayers that one day they’ll get that their behaviors are just wrong.

So, when you read Delightfully Different keep your violins in their cases unless you know the notes to Mia’s symphony or you become inspired to write one of your own.  Violins are for playing music not for pity parties.  We’re doing great here, but we would appreciate it if you shared our story School with others, so maybe it can help them too.

With much Aloha “from the land where palm tree’s sway,”

D. S. Walker

For Me, It Really Is about Forgiveness

©dswalkerauthor

©dswalkerauthor

I agree with Don Henley’s song, “The Heart of the Matter.”

The Mayo Clinic even agrees although in different words. You will find a total of 154 references to forgiveness, if you go to search their site. It is even part of a stress management and resilience program called SMART. Forgiveness is part of this structured program to develop a calm disposition. You can see two articles from the Mayo Clinic about forgiveness at the links below.

http://www.mayoclinic.com/health/forgiveness/MY01290

http://www.mayoclinic.com/health/forgiveness/MH00131

Harvard Medical School has an article about the health benefits of forgiveness.

http://www.health.harvard.edu/press_releases/power_of_forgiveness

You don’t have to look very far to see that most religions also talk about forgiveness. I’m not going to go into that here. You can look these up if you choose.

You may remember I mentioned Immaculee Ilibagiza, in my Lessons of Forgiveness blog on September 21, 2010. My point here is simply to point out that we are not the only ones who believe in the power of forgiveness.

I choose to continue to work to forgive, because I know holding onto anger causes me more harm than it causes those who hurt me in some way. Yet, as I said before, it is not easy, especially when people hurt my children in some way like the bullies hurt one of my children, and other children have tried to bully the other one. Don’t expect me to be a passive individual if you say or do something to harm my child, because remember that is when I am a lioness or grizzly bear.

Still, I continue to try to practice forgiveness in all aspects of my life, so I will forgive you just not right away. Hopefully, one day it will get easier to forgive the more I practice. Better still, maybe one day the world will be a place without bullies and where children on the autism spectrum, or with another type of difference are accepted, not mistreated.

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.