Hawaii Celebrates Girls’ Day 7

Hello Kitty - CopyYou can click on this link for a short explanation: Celebrating Girls’ Day in Hawaii by Chris Bailey | HAWAII Magazine | Hawaii news, events, places, dining, travel tips & deals, photos | Oahu, Maui, Big Island, Kauai, Lanai, Molokai: The Best of Hawaii

I decided Girls’ Day might be the best time to bring up a topic dear to those of us who are mothers of girls on the autism spectrum.  Why is it that girls on the spectrum are not getting equal time when it comes to studies, and why are some doctors still down playing or misinterpreting symptoms in girls?  Read more about this in an October 1010, article from Science Daily by clicking on this link:  Girls with autism or ADHD symptoms not taken seriously, study suggests.

Researchers in Boston have been studying electroencephalograms (EEGs) of babies and believe they can detect which babies are most likely to develop autism, but get this, they note that the accuracy rate for girls was only 80 percent at age six months and it dropped to 60 percent after that.  Whereas, the boys accuracy rates were not even significant at six months and were nearly 100 percent at nine months, dropping to 70 to 90 percent  by twelve months.  You can read about it at this link:  New test to detect autism in babies? – Daily Dose – Boston.com.

The above study seems to indicate studies done on boys are not valid for the girls.  So why aren’t more studies being done on the girls?

I find all of this worrisome.  How many girls are we preventing from achieving their full potential by denying them understanding?  What do you think?  Do you know of ways we can help to change this? 

Appearance on The Body Show – February 7 2011 6

The audio of the radio show I mentioned in my post earlier this week:

Overcoming Fear for a Cause | dswalkerauthor.

is now available.

The Body Show – February 7 2011.

FYI:  Try not to notice the fear in my voice in the beginning of the show.  It did get better thank God!  I was fortunate because Todd Addelson, M. S. , BCBA, who was also a guest, carried the beginning of the show with our wonderful host, Dr. Kathy Kozak while I reminded myself to breathe so I could actually speak.  I did get over this as we talked and I began to relax and enjoy our interaction.  Listen and let me know what you think of my first ever radio experience.

Addendum: The Podcast is no longer available.

News Media Reports Parents Blame Asperger 4

In the news today, is the story of a twenty-one year old male from Armstrong County,  Pennsylvania who the media reports had a radical Islamist online persona and videos suggesting paramilitary training for terrorist activities. During his arrest last week he is alleged to have bitten two FBI agents and reached for a concealed weapon. The reason I am posting this is the media also reports that his parents are saying he has Asperger’s and offering this as a defense. It is unclear if this is just a defense for the biting or for everything.

Dec. 2010 086

We have a friend who is a weapons trainer for the military who let my son shoot this gun once, but my son normally only shoots air rifles. My son is not the one with the diagnosis, but I don’t know why anyone outside of the military would need the type of weapons involved in this case.

Below is the news article:

FBI finds another alleged home-grown jihadi in Pennsylvania « Hot Air.

Here we go again placing the blame on Asperger’s! I don’t know if anyone remembers, but when the Virginia Tech shooting happened the first response from his family came from an Aunt in Korea who said he had been diagnosed with autism as young boy. It upsets me that the news media jumps on this and runs with it, but they at least are somewhat reasonable in the article listed above. It is the comments that follow that are really the concern and especially the fact that everything gets so twisted the more the story is told.

I personally think whatever is going on with this young man, it is more than Asperger’s.  After the Virginia Tech shootings, we learned that he was a victim of horrific bullying in high school. Now I don’t know that even that caused him to become a shooter and I don’t know anything about the young man in today’s story other than what is in this article.

However, I do know that with understanding and support children can overcome bullying. I also know that Asperger’s does not make someone a terrorist or a shooter. What our children need is what every child needs an environment of tolerance, acceptance, understanding and support to manage challenges that sensory sensitivity and literal thinking can cause. They certainly do not need to be lumped into a group that implies they have no morals or ability to make their own rational decisions anymore than they need to be told that their Asperger’s is not relevant or it is just a made up diagnosis by over-reactive parents.

My child knows that Asperger’s is not a “get-out-of-jail-free” card and from reading other blogs, I know most parents of those on the spectrum agree with me. I want the media to stop blaming autism spectrum every time the diagnosis comes up in these cases. I want our society to change to a climate of helping those on the autism spectrum and anyone else who faces challenges. I want bullying to stop, even bullying by the news media.

Please try to find out exactly why this young man decided violence was the answer to his problems, but don’t blame his diagnosis of Asperger’s unless you have facts to support this. There are many people on the autism spectrum who have endured enough abuse in their lives without you feeding into it. Many have grown into amazing adults against all odds. Just look at Temple Grandin or better yet take the time to read some of the blogs listed under Special Peeps. There you will find some accomplished people who happen to also have a diagnosis that places them on the spectrum. You will also find parents who are working hard to raise responsible and caring children who have a diagnosis that places them on the spectrum.

And parents, if you have a troubled child with any diagnosis don’t blame the diagnosis. Get help for your child and be there to help them through whatever is causing them pain instead of blaming them. It is your job to turn them into the best adults they can be, so you don’t get a “get-out-of-jail-free” card either.

Aloha,

Sue

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.