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.

12 comments

    • It is nice to see your face on my blog. Thank you for the wonderful review too. I plan to write another gratitude post later this week. One of the things I am grateful for is your review of my novel.

  1. I hope your thoughts are heard. Your line ‘We risk wasting the bright minds and talent of so many unless society changes to a place of understanding, patience and acceptance’ relates to my situation so well I’m a mother of an autism child counting the days and hoping that a day would come when my society would understand or accept children with autism.

    • I hope your child does well. We all have to continue to do our part by educating others. Thank you for stopping by and commenting.

  2. You bring together many related facts very nicely without strong-arming a particular stance. Predicting the effects of a change in the DSM is dicey at best in my opinion. I suspect more direct intervention with those who would bully is more effective in preventing bullying than the change in the DSM – it’s a long distance to connect those two dots. As parents you afforded your daughter bully-prevention by understanding her better – no matter the names given her behaviors. Still, I see where having a language for the behaviors helps. (Seems I’m going in circles. I’ll stop here.)

    • Barbara,
      I don’t think you are going in circles. I think for us the diagnosis would have helped because we would not have followed bad advice that caused our daughter’s self esteem to suffer. We made her feel bad about sensory issues she could not control by telling her she was being silly. Two of her elementary teachers also unknowingly contributed to her low self esteem by treating her like she was a disruptive child because she was sometimes abrupt. Another teacher harassed her about a vocal tic repeatedly and made a point of telling her she was disturbing the other students. In fact, the tic was brought on by stress. So yes, the diagnosis would have helped in many ways. The lack of understanding made my daughter more prone to bullying by others.

  3. Very thought provoking. I think in the coming decades that many of the psychiatric disorders which we know to be neurological disorders will make that leap. As science advances, it should move more to neurologists to deal with. There’s a relatively new branch blending neurology with psychology, which makes complete sense.

  4. Hi.

    I like your blog and look forward to reading more. Your post is thoughtful and informative, and you sound like a wonderful advocate for your daughter.
    Diane

Comments are closed.