As I was listening to Jenny McCarthy last night on Larry King Live, I was struck by the huge communication gap between parents and physicians. I can't imagine how these two groups will ever learn how to communicate without an interpreter.

The panel included 3 physicians and Jenny McCarthy. It was a battle of sorts, between  the professional, medi-lingo-savvy, detached physicians, and a passionate, angry parent of a child with autism, who believed her child was hurt by vaccines. In the end, neither party heard the other at all.

The problem is that both sides have almost totally different priorities. Both parents and physicians want the best for the children, but that's where the similarities end. Physicians want hard evidence, supported by a formal study before making a move. Physicians don't take the sequential anecdotal evidence that parents bring as significant evidence. Parents are motivated to protect their children from  harm, and aren't willing to wait for the bureaucratic glacier to move while their children become statistics- this is where the problem lies.

So where is this glacier? It's the CDC. Some say the CDC is prioritizing protecting our children from acquiring infectious disease at the expense of causing autism in some individuals, some say the CDC is protecting the vaccine manufacturers from litigation and the resulting fallout for the drug companies, but the CDC says that it just doesn't think there's sufficient evidence to support that vaccines can cause autism. Until there's a different global viewpoint at the CDC, parents will have to continue to push for vaccine reform.

What do I think? I think that autism may very well show up in some individuals as a result of immunization injury. I don't think that happened to my son, as he was showing signs of autism very early on, before he had any vaccines. However, I think that it's entirely possible that vaccines could trigger autism in some individuals, especially with all the vaccines our children have to take early on. I'm not 100% positive, but it seems like the evidence is certainly pointing in that direction.

The vast majority of children who are vaccinated don't become autistic, which is the main reason why the CDC states that vaccines don't cause autism. But there's one theory out there that could burst that belief bubble... The theory that there may be a genetic predisposition in some individuals to develop autism, much like the genetic disposition to develop cancer. And it goes like this...

We all know people who have smoked like crazy, lived to 100, and haven't developed cancer. Yet others get cancer at 30, smoking or not. With cancer, we all know that it's a question of genetic disposition. For instance, if you possess a genetic predisposition for cancer (like a lot of people), you can set it off really easily by smoking. If you don't have that particular predisposition, you can smoke like a chimney all your life, and you probably won't get cancer. Likewise, if you have a genetic predisposition for autism, you may set it off with a vaccine, and if you don't have that disposition, you probably won't.

Is this theory correct? I don't know, and even all the people who've convinced themselves that it's true (like Jenny McCarthy) still don't unequivocally know either. But it sounds quite feasible to me, and I think that in time we'll all find out-  sad but true, that vaccines can indeed, cause autism in some people.- Sandra Sinclair

www.autismvoice.com

One of the more difficult parts of parenting a child with autism,
and something that can be hard to talk about, is the embarrassment you may feel about your child's behavior. As parents, we're not supposed to feel embarrassed about our children, yet we're also taught that children should behave, and if they don't, it's probably a result of faulty parenting.

 

 

This belief system can be very disempowering, especially for a
parent of a child with autism, because it's impossible to control
everything your child does. At those times when your child is
acting strangely or falling apart, you can feel embarrassed or
angry about the judgment you may feel from others. As a result, you may feel pressure to do something against your instincts, such as punish your child, just to save face, to look like you're in
control, or to assuage your anger.

 

 

In reality, just like the sadness issue, how you feel about others'
opinions is completely up to you. Believe it or not, you can choose
to feel however you like when your child throws a tantrum in the
mall. You don't have to feel unhappy just because your child is
unhappy, or because others may judge you or your child. It's
possible to empathize with your child in the situation while
remaining happy and calm, or at least neutral and calm.

Next time you're in such a situation, ask yourself this question-

"Which attitude would best serve me, my child, and this situation?
Happy and calm, or embarrassed and angry?" My guess is that happy and calm would be the better choice in most situations, but
ultimately your mindset is up to you. You cannot be influenced by
others' opinions, your child's feelings, or anything else, unless
you decide that you can.

 

 

Now let's turn for a moment to the person who is judging your
child. This is someone who is judging a child with special needs.
What exactly does that say about them?  In reality, their judgment doesn't define you or your child at all. Instead, their judgment
defines them as someone who needs to judge. It has nothing to do with you or your child.

 

 

If your child could do better right now, he would. In time he will
do better, no matter what's happening at this moment. If you choose happiness instead of embarrassment, you can best support your child when he needs you most, even while he's falling apart at the mall.

 

Sandra Sinclair

www.autismvoice.com

 

 

Don’t be Afraid of the Myths and Misconceptions about Autism.

Parents often feel sad, afraid and confused when they learn their child has an autism spectrum disorder, and It’s no wonder -- autism is often portrayed as a grim, lifelong disability, from which there is no hope of recovery.

Of course, these expectations are based on outdated information about people who grew up a generation ago, when only the most severe cases were diagnosed, and treatment was practically nonexistent. Unfortunately, parents are still given this outdated information, presented as if it’s still accurate and relevant in our present day.

These misconceptions lead to more fear, more sadness, limited expectations, and feelings of incompetence in parents about how to best help their child. As a result, some parents rely entirely on other people to work with their child and to make decisions for their child, instead of trusting their own instincts, knowledge, and abilities. Parents are their child’s best resource, yet somehow that’s not the message they’re getting from the experts.

 

Don’t be Afraid to Believe in Your Child’s Potential.

Each child has their own unique, unknown potential. Everyone who works with your child must believe in his ability to learn, grow, and have a bright future.

With effective intervention, the vast majority of children experience improvement, ranging all the way from slight recovery to complete recovery, and everything in-between. The degree of recovery a child experiences depends primarily on his unique potential, combined with whatever learning opportunities he experiences.

Learning opportunities are not just teaching style and content alone. A child's overall environment and expectations are also an integral part of his learning experience.

Knowing these things, we can do three very powerful things for our child:

1. We can love our child as he is now, and provide a positive, nurturing environment.

2. We can keep a completely open mind as to how far our child can go.

3.We can present lots of positive opportunities for learning and growth.

If we do these things, our child will have the opportunity to truly fulfill his unique potential.

 

Don’t Be Afraid to Ask Questions.

If your child has been diagnosed with an autism spectrum disorder, it’s important to ask questions. Ask as many as you need in order to feel confident in your understanding of the disorder. Even if you get most of your initial questions answered, you may find there are still many questions that no one can answer conclusively, because in many ways autism research is still in its infancy. Researchers are still gathering information regarding cause, prognosis, and what interventions are most effective.

 

Don’t Be Afraid to Explore Your Options.

Get to know all your options. It takes some time, but continue to seek opinions and advice from people with different backgrounds in autism. Even after your initial questions have been answered, it’s still a good idea to consult with additional people with different types of knowledge and expertise.

For instance, you may want to ask a few different doctors, psychologists, teachers, therapists, and parents with contrasting approaches to autism about their opinions and experience. Our understanding of autism is continually evolving, and one person may have knowledge that another does not.

As you gather more and more relevant information, you will make better and better decisions for your child. Remember, no decision is carved in stone. In fact, you’ll probably change direction and switch approaches a few times, and that’s okay. It’s all part of the process of learning what works best for your child, and adapting to your child’s changing needs.

 

Don’t Be Afraid to Work with Your Child.

Never believe that the experts have all the answers and that you should not get involved with your child’s treatment program. Talk with the experts to learn more about what you can do at home with your child. Do further research by reading books and articles on autism, attending classes and conferences, and talking to other parents.

You know your child better than anyone else. In addition, you have an undeniable bond with your child that no one else could ever possibly have. Take advantage of your bond to teach your child, build his self-esteem, and explore treatment options you feel will work for your child.

Regardless of their potential, children will seldom go beyond the expectations of their parents. We can't know how far our children can go, but we can take the lid off the box of low expectations, by having faith in their ability to learn, and by providing the loving environment necessary for them to achieve their highest potential.

 

Sandra Sinclair, www.autismvoice.com

Another great article by Ellen Notbohm, specifically written for teachers.

Sandra Sinclair

www.autismvoice.com

 

TEN THINGS YOUR STUDENT WITH AUTISM WISHES

YOU KNEW

 

These ideas  make sense for other kids too

 

© 2005 Ellen Notbohm

 

 

Author’s note:  When my article "Ten Things Every Child with Autism Wishes You Knew" was first published in November 2004, I could scarcely have imagined the response.  Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism.  “Just what my daughter would say if she could,” said one mother.  “How I wish I had read this five years ago. It took my husband and I such a long time to ‘learn’ these things,” said another.  As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child’s voice, a voice not heard often enough.  There is great need – and I hope, great willingness – to understand the world as special needs children experience it. "Ten Things Every Child with Autism Wishes You Knew" became a book in 2005, and now the voice of our child returns now to tell us what children with autism wish their teachers knew.

 

 

1.Behavior is communication.  All behavior occurs for a reason.  It tells you, even when my words can’t, how I perceive what is happening around me. Negative behavior interferes with my learning process.  But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.

 

 

Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from “bad” behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don’t understand what is expected of me. Look beyond the behavior to find the source of my resistance.  Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings.  Over time, a pattern may emerge.

 

 

2. Never assume anything.  Without factual backup, an assumption is only a guess. I may not know or understand the rules.  I may have heard the instructions but not understood them.  Maybe I knew it yesterday but can’t retrieve it today. Ask yourself:

 

 

Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I’m asked to do a math sheet, maybe I don’t know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.

 

 

Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn’t eat breakfast and am now famished.

 

 

3. Look for sensory issues first. A lot of my resistant behaviors come from sensory discomfort.  One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. 

 

 

Or maybe I need to sit closer to you; I don’t understand what you are saying because there are too many noises “in between” – that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding. 

 

 

Ask the school occupational therapist for sensory-friendly ideas for the classroom. It’s actually good for all kids, not just me.

 

 

4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn’t so far physically removed that I won’t be able to rejoin the activity flow of the classroom smoothly.

 

 

5. Tell me what you want me to do in the positive rather than the imperative. “You left a mess by the sink!” is merely a statement of fact to me.  I’m not able to infer that what you really mean is “Please rinse out your paint cup and put the paper towels in the trash.”  Don’t make me guess or have to figure out what I should do.

 

 

6. Keep your expectations reasonable. That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me.  Maybe I’d be better off helping the school secretary put together the newsletter.

 

 

7. Help me transition between activities. It takes me a little longer to motor plan moving from one activity to the next.  Give me a five-minute warning and a two-minute warning before an activity changes – and build a few extra minutes in on your end to compensate.  A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently. 

 

 

8. Don’t make a bad situation worse. I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don’t mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:

 

·        Raising pitch or volume of your voice.  I hear the yelling   and  shrieking, but not the words.

 

·       Mocking or mimicking me.  Sarcasm, insults or name-calling will not embarrass me out of the behavior.

 

·        Making unsubstantiated accusations.

 

·        Invoking a double standard.

 

·        Comparing me to a sibling or other student.

 

·        Bringing up previous or unrelated events.

 

·        Lumping me into a general category (“kids like you are all the same”).

 

 

9. Criticize gently.  Be honest – how good are you at accepting “constructive” criticism?  The maturity and self-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you.

 

• Please!  Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.

 

• Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.

 

• Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.

 

• Practice or role-play – show me—a better way to handle the situation next time.  A storyboard, photo essay or social story helps.  Expect to role-play lots over time. There are no one-time fixes.  And when I do get it right “next time,” tell me right away.

 

• It helps me if you yourself are modeling proper behavior for responding to criticism.

 

 

10. Offer real choices – and only real choices.  Don’t offer me a choice or ask a “Do you want…?” question unless are willing to accept no for an answer.  “No” may be my honest answer to “Do you want to read out loud now?” or “Would you like to share paints with William?” It’s hard for me to trust you when choices are not really choices at all.

 

 

You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself.  Providing me with frequent choices helps me become more actively engaged in everyday life.

 

• Whenever possible, offer a choice within a ‘have-to’. Rather than saying: “Write your name and the date on the top of the page,” say: “Would you like to write your name first, or would you like to write the date first?” or “Which would you like to write first, letters or numbers?”  Follow by showing me:  “See how Jason is writing his name on his paper?”

• Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can’t.  When this happens, I won’t get as frustrated if I understand why:

 

1. “I can’t give you a choice in this situation because it is dangerous. You might get hurt.”

 

2. “I can’t give you that choice because it would be bad for Danny” (have negative effect on another child).

 

3. “I give you lots of choices but this time it needs to be an adult choice.”

 

 

The last word:  believe.  That car guy Henry Ford said, “Whether you think you can or whether you think you can’t, you are usually right.”  Believe that you can make a difference for me.  It requires accommodation and adaptation, but autism is an open-ended disability.  There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I “can do it.”  Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I’ve left your classroom.

 

 

© 2005 Ellen Notbohm

 

Ellen Notbohm is author of the new book “Ten Things Every Child with Autism Wishes You Knew”, winner of iParenting Media’s Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine’s 2006 Teacher’s Choice Award, from which this article is adapted.  A columnist for Autism Asperger’s Digest and Children’s Voice, her articles on autism have also appeared in numerous and websites.  Your comments and requests for reprint permission are welcome at ellen@thirdvariation.com.

Keywords: PDD, NCLB, Autism, Aspergers, ASD, AS