Wednesday, November 9, 2011

Sugar-coating

This past week, two reports in the national news regarding autism caught my attention. An article in USA Today entitled “Adults with Autism Speak Out” notes, “Today, as more children with autism enter adulthood, some are rejecting the idea that autism is a disease to be cured.” Not surprisingly, those adults with autism who vocally oppose the concept of curing the disorder are usually at the high-functioning end of the spectrum and are often categorized as having Asperger’s Syndrome. Some feel that the desire to cure autism means a lack of acceptance of the child as he or she is. As Cathy Pratt, director of the Indiana Resource Center for Autism, states in this article, “If their autism is part of their character, part of how they identify themselves, to say to them that we have to cure you now is really saying that we don’t accept who they are now.” Asserting that autism is not only something to be accepted but also a condition to be celebrated is Dana Renay, president of the Autism Society of Indiana. Ms. Renay, who is also the parent of a child with autism, is quoted in the article as saying, “People with autism can do anything they want to do. They should be given the opportunity to be whomever they want to be, and part of the greatness of who they are is their autism.” [To read the entire article, click here.]

Echoing this concept that autism offers certain benefits, a Fox News report, “Autism Can Be an ‘Advantage,’” points out that “scientists need to stop viewing the traits of autism as flaws that need to be corrected,” as explained in a recent commentary in the journal Nature. According to University of Montreal psychiatry professor Dr. Laurent Mottron, “Recent data and my own personal experience suggest it’s time to start thinking of autism as an advantage in some spheres, not a cross to bear.” Dr. Mottron supports his position by noting that people with autism often display extraordinary memories and special skills in auditory and visual tasks. On the other hand, Dr. Mottron also points out the realities concerning the challenges autism poses, stating, “One out of ten autistics cannot speak, nine out of ten have no regular job, and four out of five autistic adults are still dependent on their parents.” [To read the entire report, click here.]

As I previously explained in my blog entry “Curebie,” I am a parent who actively seeks and prays for a cure for autism. Perhaps my recent experience with Alex’s anxiety attacks over the weekend has made me especially frustrated with those who sugar-coat the realities of autism. After watching our nearly twenty-year-old son become so agitated that he hurled his six-foot frame at Ed and me, hitting, kicking, and biting, I fail to see how autism is an advantage. As he yelled about his obsessions, enhanced by his phenomenal memory, ranting repeatedly about exact gas prices on specific dates several years ago and frantically blurting, “I’m sorry!” and “Happy New Year!” over and over to make certain we knew how angry he was, we have trouble seeing these autistic behaviors as anything but flaws, “crosses to bear” for all three of us. Sadly, we’re not the only parents dealing with these upsetting behaviors that need to be eradicated instead of celebrated. Certainly, we love Alex unconditionally and know that he can’t help the way he behaves, but we hate what autism does to him. Just as my parents refused to allow me to walk around terribly nearsighted and made certain that I had glasses or contact lenses to help me deal with the limitations of my eyesight, Ed and I have worked to help Alex overcome the obstacles autism has presented in his life. While I always try to maintain a positive attitude, I refuse to look at autism through rose-colored glasses, and by sharing our experiences honestly, I hope that others are not blinded by those who present autism as something wonderful. Of course, those with autism deserve understanding and acceptance, but what they deserve most is to be able to live life to the fullest, happy and free of the limitations of autism—able to express themselves, hold down jobs, and live independently. Don’t all parents want that for their children?

“For they do not speak peace, but they devise deceitful matters against quiet ones in the land.” Psalm 35:20

4 comments:

farmwifetwo said...

Having been in autism-land for the last 5yrs, the group that doesn't want a cure hasn't changed any. Most members are still the same, the mantra is ongoing and in Canada those with children with Asperger's can no longer get the Disability Tax Credit for them.... something that group shouldn't be proud of.

Every day, I advocate for appropriate services, appropriate care. Every day, I mention the dangers that these people present to me and mine to those in my sphere. Ironically, most people in the real world don't know they exist nor care.

Autism is not wonderful, even with a high functioning one.... who freaked out last night b/c his Father had the remote in his hand and although was planning to put on the show he wanted, was looking for what came on after when they were in bed, while the commercial's were on.... then there's the nasty "Theory of Mind" which ironically our eldest (mild NLD) one has, not the younger severe end one does. My youngest has "normal" emotions, "normal" behaviour for his age... it's the mild elder one with the excessive issues.

Just ask younger bro. The more I teach him, the more he learns, the more frustrated he gets at the boundaries I have to set to protect him..... He doesn't think autism is "wonderful" or "glorious" or "a way of being".

K. C. said...

Well-written as always, Pam. The focus should be on education and not wishing things away.

Pam Byrne said...

Farmwife two, you know what the realities of autism are because you, like me, live them on a daily basis. If adults on the spectrum want to be left alone, I suppose that's their choice, but too many kids with autism need support and help so that they can function in day-to-day life. That's not wonderful or special; that's tiring and frustrating. Thanks for sharing your insights.
Take care,
Pam

Pam Byrne said...

Hi K.C.,
Thanks for the compliment and for the great comment. We can't just wish things away; something practical needs to be done to help so many kids!
Fondly,
Pam