Autism 101 - What is Autism

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What is Autism?

Autism is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs). Autism is characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests. There is no cure for autism. Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests. Most professionals agree that the earlier the intervention, the better.

Autism has been reported to be one of the fastest growing childhood disorders in the nation. Autism is a bewildering and mysterious developmental disorder that affects one in every 150 children in the U.S. and more than 1.5 million Americans!

More facts...
~ 1 out of 150 children in U.S.
~ 1 out of 90 boys
~ Affects four times as many boys as girls
~ Current annual cost to U.S.: $35 billion
~ Estimated annual cost by 2010: $90 billion
~ 1.5 million Americans affected

A child is diagnosed with Autism every 21 minutes!

Characteristics:
Persons with autism may possess the following characteristics in various combinations and in varying degrees of severity.

May avoid eye contact
May prefer to be alone
Inappropriate laughing or giggling
No real fear of dangers
Apparent insensitivity to pain
May not want cuddling
Sustained unusual or repetitive play; uneven physical or verbal skills
Difficulty in expressing needs; may use gestures
Inappropriate attachments to objects
Insistence on sameness
Echoes words or phrases
Inappropriate response or no response to sound
Spins objects or self
Difficulty in interacting with others



Signs:
There are three distinctive behaviors that characterize autism. Autistic children have difficulties with social interaction, problems with verbal and nonverbal communication, and repetitive behaviors or narrow, obsessive interests. These behaviors can range in impact from mild to disabling.

The hallmark feature of autism is impaired social interaction. Parents are usually the first to notice symptoms of autism in their child. As early as infancy, a baby with autism may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time. A child with autism may appear to develop normally and then withdraw and become indifferent to social engagement.

Children with autism may fail to respond to their name and often avoid eye contact with other people. They have difficulty interpreting what others are thinking or feeling because they can't understand social cues, such as tone of voice or facial expressions, and don't watch other people's faces for clues about appropriate behavior. They lack empathy.

Many children with autism engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging. They also tend to start speaking later than other children and may refer to themselves by name instead of "I" or "me." Children with autism don't know how to play interactively with other children. Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking.

Many children with autism have a reduced sensitivity to pain, but are abnormally sensitive to sound, touch, or other sensory stimulation. These unusual reactions may contribute to behavioral symptoms such as a resistance to being cuddled or hugged.

Children with autism appear to have a higher than normal risk for certain co-existing conditions, including fragile X syndrome (which causes mental retardation), tuberous sclerosis (in which tumors grow on the brain), epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder. For reasons that are still unclear, about 20 to 30 percent of children with autism develop epilepsy by the time they reach adulthood. While people with schizophrenia may show some autistic-like behavior, their symptoms usually do not appear until the late teens or early adulthood. Most people with schizophrenia also have hallucinations and delusions, which are not found in autism.

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The causes of autism are still being investigated. Many experts believe that the pattern of behaviour from which autism is diagnosed may not result from a single cause. There is strong evidence to suggest that autism can be caused by a variety of physical factors,all of which affect brain development. It is not due to emotional deprivation or the way a person has been brought up.

There is evidence to suggest that genetic factors are responsible for some forms of autism. Scientists have been attempting to identify which genes might be implicated in autism for some years.

Autism is likely to have multiple genes responsible rather than a single gene. The difficulty of establishing gene involvement is compounded by the interaction of genes and by their interaction with environmental factors. For these reasons genetic testing to diagnose a pre-disposition to an autistic spectrum disorder is not, at present, possible.

The theory that parental practices are responsible for autism has now been disproved and in February 2009 a special federal court ruled that there was no proven link between certain early childhood vaccines and autism that developed in three children.

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The question on most parents mind of newly-diagnosed children, "Is there a cure for autism?"

Unfortunately, at this point in time there presently is no known cure for autism. However, more beneficial ways to understand the condition and aid individuals in coping with the many symptoms of autism are being discovered..

A few of these symptoms can diminish as some children age and some symptoms have even been known to disappear altogether. With appropriate intervention, many of the autism behaviors can be positively changed, even to the point that the child or adult may appear to no longer have autism. However, the majority of individuals with autism, continue to demonstrate some symptoms of autism to some degree throughout their entire lives.

Experts agree that early intervention is important in addressing the symptoms associated with autism. Most professionals also agree that individuals with autism respond well to highly structured, specialized education programs that are designed to meet the individual's particular needs. In any treatment plan, it is important for family members and treatment providers to address areas of social skill development, communication, behavior, and sensory integration.

The Applied Behavior Analysis (ABA) approach teaches social, motor, and verbal behaviors as well as reasoning skills. ABA treatment is especially useful in teaching behaviors to children with autism who may otherwise not "pick up" these behaviors on their own as other children would. The ABA approach can be used by a parent, counselor, or certified behavior analyst.

ABA uses careful behavioral observation and positive reinforcement or prompting to teach each step of a behavior. A child's behavior is reinforced with a reward when he or she performs each of the steps correctly. Undesirable behaviors, or those that interfere with learning and social skills, are watched closely. The goal is to determine what happens to trigger a behavior, and what happens after that behavior to reinforce it. The idea is to remove these triggers and reinforcers from the child's environment. New reinforcers are then used to teach the child a different behavior in response to the same trigger.

ABA treatment can include any of several established teaching tools: discrete trial training, incidental teaching, pivotal response training, fluency building, and verbal behavior (VB).

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The puzzle pattern reflects the mystery and complexity of the autism spectrum.

The different colors and shapes represent the diversity of the people and families living with the condition.

The brightness of the ribbon signals hope-hope that through increased awareness of autism, and through early intervention and appropriate treatments, people with autism will lead fuller, more complete lives.

Charlie's Eyes

Through eyes sometimes unfocused,
I see more than you.
I see your soul. I see your spirit.
I know your goodness. I know your hate.
Can you see mine?

Through ears sometimes deafened,
I hear more than you.
I hear your laughter. I hear your cries.
I hear the voices around me. I hear the talk of trying to fix me.
Am I broken? I didn't know.

Through a mind shackled by silence,
I understand more than you.
I know when you are happy and when you are not.
I know your frustration. I know your anger.
I am angry too. Wouldn't you be?

I am angry when you don't understand me.
My rage consumes me.
I have no words for your ears to hear. So I scream. And scream. And scream.
My rage consumes me.
Maybe, if I hit and bang and throw, you will understand.
My rage consumes me.
Can you hear me now?

I am not part of your world.
God will join our worlds.
The angels told me so.
They are with me always.
For now, you need to embrace mine.
Embrace it for what it is, not what you pray for it to be.

Love me.
Love me as I am.
That is how I love you.
Love me beyond the stares of the unknowing.
They are in your world.
Love me in mine.

"unknown"

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What people are saying about Jenny's Book....

"Jenny McCarthy takes us on journey of a mom dealing with her son's autism diagnosis and treatment. We learn what it is like to be a parent and have your dreams shattered. We learn about a disease and about how others dealing with similar circumstances can aid one another. We learn about alternative approaches that seem promising. We learn about healing, hope, and faith."

"Jenny has done an incredible job retelling the story of Evan, who also was forced to make the perilous journey through Autism. Autism is not a dead end diagnosis. It is the beginning of a journey into faith, hope, love, and recovery"

"Emotional, devastating, story of hope."

"Honest, informative, down-to-earth, and sometimes painful. Mothers everywhere thank her."

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What Is It?
A gluten-free diet is an eating plan in which gluten (a protein found in some grains) is eliminated from the diet. Foods and drinks containing wheat, barley, rye, oats, or anything made from these grains are avoided. A gluten-free diet is often used for children with autism in combination with a casein-free diet. The casein-free diet calls for the elimination of milk protein (casein). Both diets are called elimination diets because a particular type of food is eliminated from the child's meals and snacks (1).

Proponents of the gluten-free diet say that many children with autism have gastrointestinal difficulties that make it hard for them to digest certain grains properly. There are different possibilities for ways in which this could affect children with autism. The most studied theory is that eating gluten leads to high levels of protein by-products, called gluteomorphines, in some children with autism. These by-products may then affect behavior like a drug would. Specifically, in these children, gluteomorphines could reduce their desire for social interaction, block pain messages, and increase confusion. If gluten is taken out of the diet, the idea is that this will reduce the level of gluteomorphines, and behavior will improve as a result.

Does It Work?
The effectiveness of elimination diets in improving the behavior of children with autism has only recently been scientifically researched. This research has almost always examined diets that are both casein- and gluten-free.

One well-controlled study focused on children with autism who had abnormally high protein by-products in their urine, and therefore were more likely to be sensitive to casein and gluten (see What is the theory behind it?). One group of these children was fed a strict casein- and gluten-free diet for 12 months. This group had significantly fewer autistic symptoms than the remaining children, who were not fed this diet (8). Another well-controlled study of casein- and gluten-free diets focused on children with autism regardless of the level of protein by-products in their urine (9). Overall, the study found no significant differences in behavior between children on the elimination diet and children on regular diets, although individual parents reported behavioral improvements (9). This overall lack of effect in the second study could be because the elimination diet only lasted 6 weeks, or because the children were not pre-selected according to the level of protein by-products in their urine.

Regardless, in both cases, the tested diets were casein- and gluten-free, so it is not clear whether it was the elimination of casein, gluten, or both that resulted in any improvements. A third study that did examine the effect of a gluten-free diet on the behavior of children with autism did not compare children on the elimination diet with children not on the diet (10). Therefore, even though there were improvements seen in the behavior of children on the diet, these may also have occurred over the 5 months of the study without the elimination diet.

The current thinking is that there is at least some evidence showing that a gluten-free diet, when combined with a casein-free diet, can help improve the behavior of some children with autism. Although the casein-free diet combined with a gluten-free diet is popular, there is little evidence to support or refute this intervention and reviewers have determined that meaningful conclusions cannot be drawn from the existing literature.

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