Tuesday, April 27, 2010

Autism Awareness Guest Blogger: Christina Deanne

Bitterness and Truth

by Christina Deanne

When my son was in kindergarten, he was diagnosed with Asperger's syndrome. An autism specialist was called in through the school, she performed the standard ASDS test and drew her conclusion as a result.

My husband and I knew that Mark was special. He read when he was three years old. He could tell time at age 2 ½. He knew all the shapes in his Tupperware shape sorter, including “trapezoid.” When he was four, he read the words “drive thru pharmacy” at our local drug store. But something was off.

I struggled with the idea that something was “wrong” and that he was having meltdowns at school. I had to apply myself to get him to play with other children. It did not come naturally. I called and arranged and called and arranged. I read articles on how to help your child make friends. When I could bear it, I read articles on Asperger's and autism. And I did this all without internet and very little support.

At the time of his diagnosis, I had three children five and under. I was overwhelmed and under supported. When the kids were in bed, I cried in my kitchen and had it out with the Lord. I screamed silently in accusation and alternately asked Him to help me. I felt myself slipping away and I couldn't. I had two other small children who needed me.

I remember standing in my kitchen and I told myself, “I will be angry. I can hang on to that. I will be bitter.”

Hindsight is always 20/20, but at the time, I felt I could only cope and think clearly if I was angry. And I did. Anger helped me live and walk and shop and do laundry and read stories and make dinner and put kids to bed. But it scarred my soul.

Three years later. Three years of having my inside ground up and turned to dust. Of going to church and begging God for help and feeling utterly abandoned. Three years later, I turned to my husband and said, “I cannot fix this.” That statement was the beginning of my new life and hope.

It took another couple of years to go online and when I did, I found the community and support that I needed. It took those two years to work that anger out of my system. Even when I was feeling good, I could feel anger's cold tentacles gripping my heart.

Rick Warren in his book “The Purpose Driven Life” says in effect that your problems are your ministry. I believe that to be true. I wish that I could say that I run a great ministry for parents of children with autism. I don't. I'm a stay at home mother, who has a thirteen year old son with Asperger's. And he's doing well, not perfect, but good. But those ugly feelings did their work and God cultivated a heart of encouragement and mercy that I did not have before this dark experience.

What I have learned through all my anger is that God knows all about you and can take it. I was never dishonest with God about my feelings. You cannot be, even if you tried. I was always upfront with Him and never held a thing back. He bore it so patiently and met me with truth. Although I gave Him the dust and ashes of my soul, the Lord turned it into something beautiful.


Christina Deanne is a wife and stay at home mother who lives in the Chicagoland area. She went back to college and is pursuing an Associates of Applied Arts degree. She has written several articles about her experiences as a parent of a child with Asperger's.

Thursday, April 22, 2010

5 More Common Myths about the Autism Spectrum

In a previous post, I listed five common myths about people on the autism spectrum. Here, I’ll discuss five more common myths and their factual counterparts.

Myth 1: People on the autism spectrum cannot get married and raise a family

Fact: Many autistics are happily married and parents. While it may be more difficult for a person on the autism spectrum to maintain relationships and deal with the stress of raising children, there is no reason to believe they are incapable of living a normal, happy life.

Myth 2: People on the autism spectrum have excellent memories

Fact: This is a common misconception likely based on the seemingly endless streams of trivia some autistics can recite. However, not all autistics have the profound memorization skills often attributed to them. Some have above average memories, some have average memories, and some have memories that resemble a sieve: the information goes in and then goes back out just as quickly.

Myth 3: People on the autism spectrum are unhappy and miserable

Fact: While many autistics do suffer from depression, it is usually not caused by the autism itself. Instead, the depression comes as a result of the treatment of those around them and society as a whole, who look at the diagnosis of an autism spectrum disorder and immediately make assumptions about the persons abilities, or lack thereof, based solely on preconceived misconceptions. Placing limitations on an autistic simply because he is autistic is one of the worst things you can do. No one likes to hear he can’t do something because of something that makes him different; that’s what led to the civil rights movement of the 1960s. People on the autism spectrum who are allowed to be themselves, even if that self isn’t “normal,” tend to be much happier and more well-adjusted than autistics who are forced to conform or held back because of their autism.

Myth 4: People on the autism spectrum want to be cured

Fact: Although many people may call for a cure for autism, few of them are on the spectrum themselves. The majority of autistics are against a cure because they don’t feel they should be cured of who they are. Autism isn’t a disease; it is a way of life. To cure autism is to take away what makes the autistic who she is. Some have equated curing autism with genocide. In a way, that is just what it is, for autism cannot be separated from the autistic and to eradicate autism would eradicate one segment of society. Autism doesn’t need to be cured, it needs to be accepted and autistics allowed to be themselves without fear.

Myth 5: People on the autism spectrum are all savants

Fact: It is true that some autistics have special abilities, but there are no more savants on the autism spectrum than there are in any other group of people. Just like neurotypicals (people not on the autism spectrum), autistics have a range of talents, abilities, and deficits. To believe that every autistic must be an expert at something is to believe a lie. Most autistics are average at a variety of things, just like the rest of society. They may work to develop their talents and become impressive musicians or mathematicians, but the majority aren’t prodigies. They are just people who are good at some things and not so good at others.

The important thing to remember about people on the autism spectrum is that they are people who happen to be different. They aren’t a group to be pitied or looked down upon. Most of them would gladly answer the questions of anyone truly interested in learning about the realities of autism. Above all, treat autistics as you would anyone else and allow for the differences that are sure to make themselves known.

Tuesday, April 20, 2010

Autism Awareness Guest Blogger: Troy Corley

Yes, Your Asperger's Teen is Crazy!

By Troy Corley
Co-Founder of ASAP Asperger's Support for Adolescents Plus www.vcasap.org

Shocking to call your teen with Asperger's crazy? Not really. ALL teens are crazy when it comes to the perspective of parents, grandparents and other guardians of our emerging adults.

In fact, "Yes, Your Teen is Crazy!: Loving Your Kid Without Losing Your Mind," is the title of one of the best books on raising teens and young adults that I've ever read. Author Michael J. Bradley, a psychologist, details how the most advanced parts of the human brain continue to grow in sporadic spurts up until the age of 25 or so.

These spurts account for the often impulsive, unstable and unpredictable behavior of teens and young adults. And guess what? Teens with Asperger's are no different.

I credit Bradley's book for saving my sanity while raising my teen son with ADD. I credit his book for saving my soul while going through some traumatic times with my Asperger's daughter Em, whose anxiety over sensory issues, social situations and the school system, nearly sent us all over the edge of reason.

Raising a child with Asperger's is no picnic. But neither is raising any child in these times. What I learned from Dr. Bradley was to take a major step back in the middle of chaos and to see my daughter as a person with a teen brain first, and a person on the Autism Spectrum, second.

A key word here is not only "teen" but "person." Teens are people. They deserve the same respect you would give any person. Trying to communicate with a teen and especially inflexible Aspies with an authoritarian "it's my way or the highway" approach, simply doesn't work. In fact, it compounds an already contentious situation rife with anger that can explode into aggressive behavior.

Teens and young adults also need acceptance of who they are. And those on the Autism Spectrum not only need acceptance of who they are but acceptance of how they relate and experience the world around them, because it is different than neurotypical teens and young adults.

It took a crisis with my daughter for me to really get this message. I had to throw out my preconceived ideas about how to raise a teen and what to expect of my teen daughter with Asperger's. By wholeheartedly embracing the concept of "respect and acceptance," I dramatically changed how I related to Em. It not only brought a deeper understanding of who she is but the chaos that once governed our household has dissipated.

Is the chaos still there? At times yes, but these moments of confusion and anxiety for her have become less frequent and less intense. She has become more independent, allowing her step-father and I to be able to carve out time for ourselves as a couple, something we could rarely do before without meltdowns as a result.

With respect and acceptance as my mantra, I now not only love my daughter for who she is but I no longer focus on who she is not. I put my energy into her strengths and interests, which in turn has made her life richer and has encouraged her to pursue creative opportunities that otherwise would have been lost.

I've brought the philosophy of respect and acceptance to a social support group for teens and young adults with Asperger's and High Functioning Autism. ASAP Asperger's Support for Adolescents Plus (http://www.vcasap.org) is not another therapy group. It's an organization where young people on the high end of the spectrum can socialize and develop friendships.

Since our ASAP members come from a variety of family backgrounds, it's often a challenge to impart this philosophy of respect and acceptance to the parents, grandparents and other caregivers. Many are reeling from the impact of having a rigid relationship with their children, based on a lack of respect and acceptance. I try to quietly yet firmly get the message across.

When parents ruefully admit that their son loves to play a Pokemon card game, I tell them that's wonderful -- their son has an interest! Respect and accept this and find out who else likes to play and get a group together to play the game once a month. When parents heard the laughter from ASAP members playing a game of Taboo, they were surprised to find that it was their young adult laughing with friends and not the "normal" sister of one of our members. Respect and accept that your child with autism can have friendships and also respect and accept that using the world "normal" in reference to people on the spectrum is neither accurate nor helpful. Ashamed that your child on the spectrum is not attending college or doesn't have a career? Respect and accept that a college degree or a high-paying job does not guarantee a life well-lived.

So this April, Autism Awareness Month, celebrate your teen and young adult on the spectrum. Understand that while their brains are powered by a type of crazy growth that keeps them from effortlessly communicating with their parental units, that you can help them rewire their lives by showering them with the respect, acceptance and love they need to develop into happy adults.

You can contact Troy Corley, a mother of a teen daughter with Asperger's, at troy@vcasap.org.

Tuesday, April 13, 2010

Autism Awareness Guest Blogger: Mary Calhoun Brown

Guest post by Mary Calhoun Brown
Award-winning Author and Speaker
There Are No Words
Never will I forget the day the doctor looked me in the eye and used the word "autism" to describe my son. To say I felt hopeless and overwhelmed would be an understatement. The words "best-case scenario" were also uttered that day, although my memory of that time is a long tube with "autism" at one end and everything else faded around it.
The pity party was fabulous. You should have been there.
The following day I took one look at the most beautiful child who was ever born and decided to re-define "best case scenario." This is William's story.
Yes, I could go into chapter and verse about the games we played (staring contest, etc..), the methods we used (social stories, etc..) and the times we cried (leaving traditional school for seventh and eighth grades), but instead I'd like to tell you about his spirit.
If William has taught me one thing, it's expect the best.
Within a week of his diagnosis, we decided to tell William he was autistic. We felt he had nothing to be ashamed of, and he has never hidden this fact from anyone. Together we searched for famous people with Asperger's Syndrome (William's brand of autism) and found a list of role models that included Thomas Jefferson, Sir Issac Newton, Albert Einstein and Bill Gates. This is the foundation upon which my son built his self esteem. (Best-case scenario, indeed!)
In both elementary and middle school William gave presentations in front of his peers, disclosing his differences and taking questions. With this he began his love of public speaking. As often as possible, he would stand in front of groups of people and ignore the fact that he has a three-second auditory delay.
In his early teens William was invited to participate in President Eisenhower's People to People Student Ambassador Program. Who were we to hold him back? In seventh grade he visited England and France without us. In eighth grade he visited Italy, Spain, Monaco and southern France. And in ninth grade, we sent our Aspie to Russia, Latvia, Lithuania, Estonia, Germany and Poland.
This summer he is taking classes at Harvard University as part of its Secondary Schools program. He wants to attend Princeton or Brown after high school.
The truth is, everything I've learned about life has come from my autistic child.
Be who you are:
William has never pretended to be something he isn't. He tells people he is different. Why does everyone try to "fit in" when we were born to stand out? And he definitely stands out. At 6'3", handsome, faithful and highly intelligent, William never waivers from the truth of who he is and what he has overcome. He never fails to pray quietly over his meals. He stays late at school. He helps others even when it limits his own free time. He spends his weekends in retreat from other people (aka alone). When he's angry, he shows it. When he's tired, he shows that, too. William lives very happily in his own skin.
Say what you feel:
On his trip to eastern Europe, William traveled with a group of students who were very different from him. We live in beautiful, mountainous West Virginia, and the kids he traveled with were from cities in New Jersey. William reported to us that nearly all of those on his trip were either atheist or Jewish. He decided to share his faith with them. (Yikes, right?)
William's other passion is Lincoln-Douglas debate, and as a result, he has become proficient at arguing his case. With a wealth of knowledge on every topic you can imagine from the escalading Iranian/Israli conflict to compulsory immunizations, William can intelligently offer up the pro's and con's on just about every subject you can think of. Whether we like it or not, William always says what he feels.
Those who mind don't matter:
Ahhh, middle school. The bullying. The teasing. The social rejection and teenage angst. We all thought it was the end of the world. William caught the worst of it.
Middle school kids are always trying to avoid being the "freak," so quite often they point out someone who is "different" or "freaky" to improve their own odds. Naturally, my son (with an IQ one point less than genius) was re-named "Retard." He bore the brunt of the bullying and teasing and wore the "kick me" signs for those less different. Try as we did, including a trip in a hot air balloon with one particularly rotten kid, William never really connected with any of those children. As it turns out, their opinion of him didn't matter then, and it doesn't matter now.
Those who matter don't mind:
High school has been a blessing for William. His incredible focus and photographic memory, coupled with his love for research and public speaking have carved a niche for him on his speech and debate team. His peers respect him for what he can do, and admire his ability to get straight A's, even in Advanced Placement (AP) courses. People in our community can see that William is true to who he is. He tells the truth, even if it's not a popular truth, and that earns my son respect.
When I think back on those early days right after William's diagnosis, I remember wanting to cure him. I wanted him to be "normal." Then I read Temple Grandin's book "Thinking in Pictures," and I decided to love everything about William, including his autism. Without it, he wouldn't be the same.
Once after a tough day I asked my dear child, "If you could change one thing about yourself, what would it be?" confident I knew the answer. He said, "I'd like to be more organized." I smiled. "Yeah, me too," I said.
So, in the actions of my brilliant, faithful, handsome, autistic son and in the words of the late, great Dr. Seuss, “Be who you are, and say what you feel. Because those who mind don’t matter, and those who matter don’t mind.”

Thursday, April 8, 2010

5 Common Myths about the Autism Spectrum

Many myths abound about autism spectrum disorders (ASDs). Unfortunately, for those unfamiliar with ASDs, it can be difficult to distinguish between fact and fiction. Here are five common myths and the truths behind them.

Myth 1: People on the autism spectrum have no emotions

Fact: This myth is likely the result of many people on the autism spectrum expressing their emotions in atypical manners. Both children and adults on the spectrum experience the same range of emotions and depth of feeling as neurotypicals (people without an ASD). Autistics may laugh when others cry; they may cry when others are happy; they may show no outward sign of emotion, but the feelings are still there. Assuming they have no emotions is very hurtful to an autistic.

Myth 2: People on the autism spectrum are unaware of their surroundings

Fact: Just because an autistic is looking at the floor rather than the people around him doesn’t mean he is unaware of what is going on. Rather, he’s probably focusing on the conversation around him and absorbing every word. Many people on the autism spectrum have few or no filters when it comes to the information they take in. If they were to look at the people involved in a conversation while trying to listen to it, they would likely become distracted by the way a person’s mouth moves, the clothes people are wearing, hairstyles, etc. and miss every word spoken. By focusing on something bland, like the floor, or closing their eyes, it enables them to focus better on the conversation. You just might be surprised by what they have to add to the discussion.

Myth 3: People on the autism spectrum are either mentally handicapped or geniuses

Fact: In reality, people on the autism spectrum have the same range of IQs and in the same ratio as those not on the spectrum. You will find autistics with high IQs and those with low IQs, but the majority will fall somewhere in between.

Myth 4: People on the autism spectrum are lonely

Fact: While this may be true for some, not all autistics crave being the center of attention and surrounded by people most of the time. Many people on the autism spectrum like to be alone. They find it relaxing to not have to try to “fit in” or understand what the people around them might be thinking. It gives them the opportunity to let their minds wander and do what they enjoy. Most people think a solitary life would be torture, but many autistics enjoy it.

Myth 5: People on the autism spectrum cannot work

Fact: Many autistics can and do work. They may not function well in a highly social position, like a cashier at the local supermarket, but they are perfectly capable of working in the right environment. Autistics can be successful in a multitude of jobs, from working in a call center to being a research scientist. Each individual has his own unique abilities and interests which may lend themselves to a long-term career. Others work at whatever job is available that they can handle while looking for a career that involves their interests.

One of the worst things a person can do is to set limitations for people on the autism spectrum. Given a chance, autistics tend to surprise people with their abilities. Yes, autistics are different, but differences are what make the world the wonderful and diverse place it is.

Tuesday, April 6, 2010

Autism Awareness Guest Blogger: Rebecca West

The Gift of Autism

by Rebecca West
Special Needs Advisor for Indiana Home Education Network

Two of my five children are on the autism spectrum. Yes they are different, but they are wonderful vibrant people with a lot to offer. My son was diagnosed as a child with Asperger’s. My daughter was not diagnosed until this past fall, but we always knew she was different. The doctors were always coming up with some flakey excuse why they couldn’t diagnose autism and settled for saying she “exhibited autistic-like behaviors.” DUH! We have always treated them as normal and allowed them to be different. Rather than seeing it as a terrible fate and something to be eradicated if possible, we just accepted that was who they were and accepted the differences. They both grew up to be delightful people. Yes, they think differently and have some difficulty with social skills, but they both have a lot to offer.

My son often misses social cues and until you learn to think outside the box can seem somewhat illogical, but he has found his niche as a customer service representative for Verizon Wireless and is doing well. He has difficulty with social gatherings because too many people in a small space make him very uncomfortable and the concept of small talk totally escapes him. He can handle his job because he doesn’t have to deal with people in person and it’s all done with a computer and headset. He does have trouble if you spring anything new on him without warning or suddenly change plans. We learned a long time ago to always tell him in advance what was likely to happen and what to expect in any situation. We also learned to think outside the box in order to understand his perspective. There are times when he gets hung up on a minute detail. As a child, this might have led to a meltdown when we insisted he move on. As an adult he has learned to get past it and move on.

My daughter has difficulty going anywhere because crowds, florescent lights, noise, smells all bother her severely. She has found work online as an editor and final reader for a book publisher and is herself a published author. She is active in several online writer’s groups and has several blogs. She has always been dependable and willing to help in any way needed. She is an intelligent delightful person. Yes, she sometimes has difficulty expressing herself because the words get stuck, but be patient and she can usually manage to say what she is thinking and she is a prolific, gifted writer.

When all five kids get together there are noise, laughter, fun, and lots of philosophical discussions—basically a normal family. A diagnosis of autism is not a death sentence. Focus on what you child can do, not on what they can’t and don’t limit them. Allow them to be as normal as they can. Many autistics have trouble with verbal skills, but don’t assume they lack intelligence. Give them free access to a keyboard or pen and paper and you may just be surprised at what they have to say. Rather than behavior problems being an integral part of autism, they are frequently a symptom of frustration. Talk to your child and find out why they’re frustrated. Meltdowns are not the same as tantrums although they may look very similar.

Many autistics are very sensitive to tastes or smells or textures. They are not being deliberately difficult. They really are severely bothered and unable to cope with whatever it is. This is just one of the differences. Treat them as normal and allow the differences. If an autistic wants to be alone, don’t force them to be sociable. They probably can be made to act completely normal and interact for a prolonged period, but at tremendous emotional cost to them. Autistics can and do succeed and live rich full lives. They bring a fresh perspective in the way they view the world. Learn to listen to them. They just might have something of value to offer. Accept your autistic child, allow them to be who God meant them to be and embrace the difference.

Thursday, April 1, 2010

Autism Awareness Month

April first is more than just April Fool’s Day. It’s also the start of Autism Awareness Month. Therefore, I’m dedicating my blog to raising awareness of autism this month. In addition to some facts about autism and a bit about my own experiences as an autistic, there will be guest bloggers sharing their experiences with autism. A new post will appear every Tuesday and Thursday, and there might be a few random posts on other days, so be sure to check back often.

To kick off this month-long autism blog event, and because Easter is in just a few days, here’s a little information about autism and holidays.

Holidays can be stressful with parties, family gatherings, decorating, and travel. For an autistic it can be even more stressful. In addition to the usual stressors, the normal routine is upset, the house may look different, and being around relatives he hasn’t seen in a while can be overwhelming. But there’s no need to refrain from including an autistic in all of your festivities or change your holiday plans.

To make the transition from everyday routine to holiday festivities as painless as possible, try including your autistic child in the planning if you can. Now, she may not want to help or she may even seem uninterested, but give her the option anyway.

Go over the holiday schedule several times, starting a few days before the first change in routine. You may have to keep reminding the autistic of what is happening when, even in the midst of the holiday celebration.

If you’re going to visit family, talk about who you’re going to see. Reminding an autistic of past family gatherings and even using photographs to help refresh his memory can help make visiting family go much more smoothly.

If you have a special dinner planned, let the autistic help with it. Helping plan the menu or prepare the meal is a great way to help her adjust to the change in eating routine. Allowing her to help decorate for the holiday will help her feel more comfortable with the change in appearance of home.

With all holiday festivities, be sure there’s place for the autistic to escape and de-stress. Regardless of how prepared he is for the dinner, gathering, etc., the change in routine and number of people can still push him to the point of a meltdown. Knowing there’s a quiet place he can go to relax for a little while will go a long way toward helping him enjoy the holiday as much as the rest of the family.