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Having spent much of my professional life working with individuals with autism or autism spectrum disorder, I can tell you from experience that this disorder affects far more people than just those with the diagnosis.I can also tell you that there are many myths about autism.
Myth #1 Many people think all autistic individuals have no capacity for affection. I have been blessed by the best hugs I will ever know from children and young adults with autism or on the autism spectrum. Some of these individuals demonstrate a desire to please and a true joy to just be with the people they love. I could only wish the love of life many autistic children have could be felt by those far more fortunate.
Myth #2 People with Autism cannot communicate. While not everyone with autism will communicate verbally, many can talk quite well and many others get their points across with a variety of mediums including communicating by signing, picture exchange or with an augmentative device. Many autistic individuals have strong opinions and know what they like and given the opportunity to engage through communication is critical.
Myth #3 Autistic individuals have lower intellectual skills. Some autistic individuals actually have keener skills in specific areas. (Think about Dustin Hoffman in Rainman). Some persons with autism have a natural curiosity to learn incredible details about certain topics. I worked with one youngster who knew so much about dinosaurs that he would've easily shamed a museum curator!
You can learn about the symptoms of autism at Autism Speaks . We know that autism has no cure although early intervention can radically change its course. We know that there has been nearly a 600%(yes 600) increase in the identification of autistic cases in the past 20 years, whether because research has become more sophisticated in identifying this mystifying disorder or because it truly is on the rise, autism remains a puzzle, a challenge and a disorder without a cause or a cure. Autism affects all races, both genders and knows no social, economic or cultural borders. It is a universal disorder, where there are people, autism can be present.
Many people with autism, children included, like the predictability of events. They often thrive in routine and in environments where they can know what to expect. But, life is not routine and predictable and a change in circumstances can cause chaos for those with autism and their families, educators and caregivers. Many with autism dislike noisy environments or unpredictable sounds, like the sudden whistle of a tea kettle, the buzzer at a basketball game, school lunchrooms and even babies crying. It's often difficult to know what will spur a behavior out of control and families with autistic children know they may not be able to enjoy an evening at a restaurant, a trip to an amusement park, or even a visit to a local shopping center because these places can often be more stimulation of sights and sounds than many with autism can handle. Autism is as unpredictable as the events that seem to bring out the worst behavior in those with the disorder, but one thing I know for sure is that families of children with autism are seldom given the credit they deserve trying to make the world a better place for the children with this disorder.
I know families who have sacrificed time, sleep, their own needs and all of their resources to make the world a better place for those with this disorder. I know families who spend their days not at the gym, or out to lunch with their friends, but who have arranged their personal lives and professional work schedules to accommodate all the therapies their child needs and I know families who wonder if life will ever be normal not for them, for they have already realized the new normal since their child was diagnosed, but for their children who are frequently misunderstood, avoided or singled out.
Autism comes in all shapes and sizes and it is easy to look at a mom trying to contain a child having a tantrum as simply unable to know how to discipline and to see a father holding the hand of an older child to keep them from bolting off as being too protective, but far less easy to see a family dealing with a disorder many of us might be hard pressed to adapt to if these were our circumstances.
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April is autism awareness month. You can help a family dealing with autism by learning more about the disorder and being less judgemental and more compassionate the next time you see behavior you might not understand, because another myth says autism is just a label and all these children need is better discipline. Learn the facts, and join me in offering kudos to the incredible children and families who deal with this disorder daily. I am humbled by everything you must go through to survive another day with a puzzling disorder that leaves a permanent imprint.
Autism does speak. It's up to the rest of us to start listening.
Image by Robbert van der Steeg via FlickrIn the previous post, I talked about how critical communication is in our society. Having worked with those who have communication disorders, I am constantly cognizant of the impact our words have.
I once heard that our tongue is the strongest muscle in our body for its size and of course there is that joke that this is true because we exercise it so much.
But we really do have incredible power just through our words. Everyone seems to be able to remember the impact someone's kind or not so benevolent words made on them. I often say that I never became a dancer, because my high school guidance counselor suggested I was "too short to be a dancer." I admired and respected her and despite the fact that I never questioned why a nun's comments about my disadvantaged size should even influence me,or how a religious knew what size a dancing career required, those words stayed with me forever...and I did not become a dancer.
Similarly, I remember other times when the words of someone made me think I could fly or at least levitate if I really tried. When they are said from our heart our words can make a difference in someone's life depending on how we deliver our message.
Words are so powerful that we now have a word for words which cripple someone's spirit...verbal abuse, and daily we hear of someone whose words, perhaps taken out of context or not, cost them a job, a family or a reputation.
Cover via Amazon Do you still remember someone's words to you?
Did they influence and encourage you or did they make you feel helpless and lose hope?
The Bible tells us: "Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear.(Ephesians 4:29) .
If you are wondering if you can make a difference today, start with your words...and see what happens.
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Yesterday was strange for me. Although I could have easily lived without Facebook or twitter just a little more than a year ago, I have become quite comfortable being able to communicate with friends and loved ones with a quick post or comment. Words have been literally at the tip of my fingers.But, I supported communication shutdown.http://communicationshutdown.org and as a result pledged to obstain from using either Facebook or twitter to communicate for 24hrs. I went a step further however, and decided for 24 hours not to take any phone calls that were not critical. By noon, I wondered what I had been missing going on in my friends' lives, by early evening I really began to feel left out and certainly by the time the day was over, I was grateful my communication fast was as well.
Granted, I did accomplish a lot yesterday. I understood why a friend attends "silent retreats" regularly to refresh her perspective on life and revamp her priorities, but I also knew that after 24 hours, I wanted to re-engage and be part of the groups I belong to, feeling comfortable exchanging information, opinions and commenting about our lives and what is important to us. 24 hours and I recognized what the lack of communication feels like in an interacive society. But, I chose to participate in the shutdown because I am fully aware of what it is like to be unable to communicate even your own wants and needs. While the shutdown was to support those with autism who can't communicate, there are many individuals restricted in communicating for physical, psychological and even cultural and religious reasons.
Working with individuals all of my life who have been impaired in the ability to communicate has made me realize how important having words and being able to get them across is. It is a thrill to watch someone's eyes light up when they are given a means to communicate and they realize another person "gets" the message they want to convey. I have witnessed the eyes of children and adults locked behind the inability to communicate pleading to help them open the pathways to express their needs, wants, opinions and feelings in some way. Communication is critical whether verbal, written or through any other means. These individuals must endure the "out of it" feeling I had for far longer than 24 hours.
We take speaking, writing, talking on the phone, even the ability to use sign language for granted but for those with conditions like autism, ALS, cerebral palsy, stroke, apraxia, brain injury and other neurological deficits, communication is gift. Imagine not being able to tell someone where something on your body hurt, what you needed, where something was you wanted or how you felt about something important. Being able to communicate is as vital as breathing and the impact of restricted communication limits the quality of life one has.
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Speech and language therapists are committed to helping individuals with communication disorders put their ideas, hopes, wants, dreams and feelings into "words" verbally or through many other means, recognizing that communication is as vital as breathing and the impact restricted communication has on limiting one's life. The American Society of Speech and Hearing (http://www.asha.org) mission is to "make effective communication a human right, accesible and achievable for all."
Today, stop and think what being unable to communicate in any form would be like. How different would your life be? Would you be able to continue in your same field of employment? Have the same group of friends? Be involved in the same extracurricular activities? Proceed with the same hopes and dreams?
Communication...be grateful for the "words" you were able to make known. And stay tuned for PART 2 about WORDS.
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