The Voice of Autism
From: Dr. Chun Wong
Every time I watch the scene from Rain Man when Dustin Hoffmann’s Autistic character, Raymond has a meltdown, I cannot help but to feel sorry for his new-found brother and caretaker, Charlie (played by Tom Cruise). As Charlie stands by and watches his brother have a meltdown in a crowded airport, he looks helpless, confused and scared.
We often sympathize with the parents and guardians of autistic children and people because its difficult to imagine being in the overwhelming position of caretaker. We put focus on advocates of Autism, giving them thanks for raising awareness and funding for the cause. We praise the doctors and researchers who are studying this neurological disorder in hopes to find new causes, links and treatments that can help us to better understand Autism. We often wonder how all of these life-changing individuals get through each and every stressful day.
Parents. Caregivers. Advocates. Doctors. Researchers.
We’re forgetting someone. Actually, we’re forgetting thousands of people; those who are living with Autism. Of course, I say this more figuratively than literally as we all know that the people who are suffering from this disorder are never forgotten. However, they are often overlooked on the list of people who we wonder “how they have the strength to do it.”
In the years that Autism has been under the microscope, we’ve discovered how it affects the brain, what types of medications help to treat it, what types of things are linked to it, etc. It’s generally known what the symptoms are and what they look like as these are things that can be researched and proven. There are some things that you unfortunately cannot put under a microscope, particularly emotions and feelings. So, we’re left with the often unanswered question: What does it feel like to be autistic?
14 year old Carly Fleischmann was once assumed to be mentally retarded because she was unable to speak. She was diagnosed with Autism and 2 years ago began interacting with people via keyboard. The words that had been caught inside her for years were starting to come out and now she communicates very well using moderm technology.
Carly describes in detail how she feels both physically and emotionally, like no one else other than she would be able to do:
“It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can’t speak…It feels like my legs are on first and a million ants are crawling up my arms……Our brains are wired differently. We take in many sounds and conversations at once. I take over a thousand pictures of a person’s face when I look at them. That’s why we have a hard time looking at people. I have learnt how to filter through some of the mess.”
Carly also “speaks” about the things that any 14 year old girl does, like her fustrations with her siblings and her interest in the opposite sex. She has already inquired about when she will be allowed to go out on a date.
Carly has a website, Carly’s Voice, in which she shares more of her feelings and experiences, and also reaches out to other people living with Autism. She uses her website, Twitter and Facebook to answer readers’ questions and to provice a first hand account of what it’s like living with Autism.
“I am autistic but that is not who I am. Take time to know me, before you judge me. I am cute, funny and like to have fun….I think the only thing I can say is don’t give up. Your inner voice will find its way out. Mine did.”
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People need to be educated. We’ve watched kids with Autism and may have a foster boy with it. People either feel sorry for the kid and give them special treatment or judge the parents as doing a bad job.
I have helped out a girl at my school with autism and people dont realize she cant help it when she gets like she does. Her mother who I call my adopted mother says its weird that Im able to realte to her the way I do and she listens to me and calms down around me. I’ve never fully understood Autism but I love to help them out and i understand they cant help everything they have that goes wrong. And people who make fun of them are horrible people, they need a walk in their shoes it wouldnt be easy being autistic
I want to help out!
How inspiring.
Yep, people with Autism and those who support them are strong. It makes one impassioned…
My experience working (for over 25 years) with children and adults who are unable to communicate verbally, those with autism and not, has been like Carly’s. Generally folks who are not able to communicate verbally are considered to be mentally challenged and treated as if they were too – in the community, in schools, in residential institutions for those with disabilities). In the school system, and elsewhere, this would then be supported by the results of psychological assessment that would indicate the person was intellectually disabled. Of course the assessment tools require verbal responses and also have time limits on responses! Even for someone who had verbal abilities but needed more time to process the language first would fail the test item if they did not respond in the required time! The results of this assessment is then used to develop IEPs or IPPs!
It is marvelous that someone found a way to give Carly a voice. Imagine what we are going to learn from her. Why did it take until she was 12 years old to do this? Why can we not do this for the many others, children and adults who have a voice that needs to be heard?. In many cases it would not take rocket science to do this! The rocket science we can do, can’t we; there’s lots of funding for that. We have the technology, the therapies to give folks a voice but the funding is missing to make it happen. WHY?
It’s so easy to get caught up in our own struggles and forget what it’s like for the people we’re trying to care for. Great post. Thank you!
Worth Repeating: Yeah, Carly!!!!!! http://carlysvoice.com/?p=247
I thought about this this morning when Daniel was fist pounding his legs and yelling “Oh, Mama! Mia!” Obiviously not a great moment for him and it made me wonder what was going on in his head while trying to help him through his angst. How pained is a person who tries to hurt himself. For people who can talk about their feelings, it is a cathartic release. For those that can not, let’s hope they find an effective outlet and let’s pray that those around them are observing intently.