AUTISM: A SPECIAL KIND OF LOVING

His first coo ... Her first smile ... His first laugh ... Her first word...

 What new parent doesn’t dream of these milestones for their babies? Then cheer, call and send photos to gram, auntie – and sometimes, the immediate zip code, when Junior moves from helpless infant toward interacting with his world – and most of all, you?

Our egos soar, as we take pride in our children’s development, seeing each step as one step closer to sharing the joys of cuddling, communicating, watching their play, their progress in school, and eventually reaching goals that will bring them happiness, fulfillment, love – and independence.

But what happens when we suspect something may be wrong? When, instead of those big toddler eyes gazing at us with adoration, smiling in response to our love, or babbling “mama” and “dada” with purpose, they seem stuck. The smiles and words don’t come, or if they do, suddenly stop. Or rather than leaping forward, they engage in behavior that seems odd, regressive or locked in a world apart. A world that we feel even we can’t enter? Certainly, autism is not our first thought.

As parents, even with a first child, we are equipped with radar. We can sense, even at the youngest ages, that something’s gone awry. We may push it away. We may make excuses ... “James is a little slower to develop – so what?” We may be ashamed. We may pray this is a stage. We may hide our concerns. But they’re there, haunting us. The very idea, that there may be some serious developmental problem that our child may not be “normal,” that he or she may not be able to show or tell us of the love they feel is often too crushing, too painful to admit. And even if we did admit it, what could we possibly do about it?

These are feelings of so many parents who suspect or have learned that their child is autistic. For some, the very word conjures images of a future filled with isolation and dependency. It’s no wonder parents are deeply frightened and might even resist verbalizing their fears, or seeking help.

The good news is, while there’s still much to be learned about this Developmental Disorder known as autism, much is now known. And much can be done. Our improving understanding of autism has proven that, regardless of the severity of the condition, with appropriate treatment and education, many of these children can learn and function productively. An important key is early diagnosis to implement appropriate treatment and education at an early age, when they can do the most good.

At Camp MakeBelieve, we have found that our Parents Program is a helpful tool for many parents of autistic children. As these children vary across a wide spectrum of functioning, it’s important for you, the parent, to determine if what we offer will suit your child’s needs and abilities.

Autism Defined
Autism is a complex disorder of the central nervous system that affects many different expressions of brain development. Most people with autism have problems communicating, interacting socially, interpreting and responding to the external world, and often suffer from limited imagination and exhibit restricted, repetitive patterns of behavior. In 1943, Dr. Leo Kanner of the Johns Hopkins Hospital introduced the term early infantile autism into the English language. At around the same time a German scientist, Dr. Hans Asperger, described a milder form of the disorder that became known as Asperger’s Syndrome.

* Social interaction: Children with autism have difficulty with social relationships. They may appear indifferent or aloof.

* Social communication: They may have problems with both verbal and non-verbal communication. They may not fully grasp the underlying meaning of common phrases, gestures, facial expressions or vocal tone. They might interpret sarcasm such as "Oh, right!" as meaning they really are right. Their body language is also hard to understand. Their non-verbal cues may not match what they are saying or, their tone may not convey the emotion their trying to impart. A high-pitched, sing-song, or flat, robot-like voice is common. Others with relatively good language skills speak like little adults, missing the "kid-speak" commonly spoken by peers.

* Imagination: Play may be hampered by limited imagination. They may mimic or engage in rigid, repetitive behaviors.

* Repetitive behavior: Some children may repeatedly flap their arms, walk on their toes or freeze in position. They might spend hours lining up blocks or toys instead of using them for pretend play. Repetitive behavior may look like persistent, intense preoccupation.

* Obsessions: The child might be obsessed with learning all about bus schedules, ships or rockets and talk about it incessantly. Often there is great interest in numbers, symbols, or science. If they are interrupted, the child may show great upset.

* Resistance to change: They may resist changes in routine and demand absolute consistency in their environment. Even slight deviations in any routine—wake-up, meals, clothes, bathing, routes can be extremely disturbing. It’s been suggested that sameness and order offers stability in their confused world.

* Unusual responses to sensory experiences: Many are highly sensitive to certain sounds, textures, tastes, and smells. For example, the feel of clothes, car horn, lightening, a cell phone ring —may cause these children to react strongly, even scream. On the other hand, there are children who may be unresponsive to extreme temperatures or pain.

It is crucial to know that autism is not a one-size-fits-all diagnosis.

Although the elements above are common to most, each child is unique. The differences among them may be as great as the similarities, in terms of functioning, intelligence and behavior. Indeed, professionals now refer to autism as Autism Spectrum Disorder (ASD), as the symptoms can present in a wide variety of combinations, running the gamut from mild to severe. One child may have little trouble learning to read but have poor social skills. Some may show only slight language delays or even display precocious language with large vocabularies, but have trouble sustaining a give and take conversation.

Misunderstandings
Without meaningful gestures or the language to ask for things, ASD children often have trouble expressing their needs. Anxious or frustrated, they may yell, or grab, until they’re taught more appropriate ways to make themselves understood. When undiagnosed, their behavior may be misinterpreted as “naughty,” when in fact, their behavior is disorder-related.

A person with autism reports, “Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the pattern behind everything .”

 Frequency
Autism Spectrum Disorder appears to affect an estimated one of every five hundred children and is three times more likely to affect males than females.

Is it my fault?
While there may be a genetic component, parents do not and cannot cause ASD. Although the multiple causes of the disorder are unknown, we do know that it is not caused by “bad” parenting or lack of love and is not cured by punishment. Parents need support to manage difficult behaviors with structure and consistency.

Onset
ASD can often be detected by age three, and sometimes as early as 18 months. The baby may have seemed "different" from birth, failing to respond to people or focusing intently on one item for long periods. However, ASD can also appear in children who seemed to be developing normally. When a babbling toddler suddenly becomes withdrawn, silent, self-abusive, or indifferent to social cues, that’s a red flag.

Research has shown that parents have the best radar when it comes to noticing developmental problems in their own child -- even if they don’t know the degree or specific problem.

FAQ: What specific behaviors in my baby, toddler or pre-schooler should alert me?

Generalizations about people with autism are rarely appropriate. That said, certain traits and behaviors are common to many people with autism. Possible indicators of Autism Spectrum Disorders include:

1. · Does not babble, point, or make meaningful gestures by age one.
2. · Does not speak even one word by 16 months
3. · Does not combine two words by 2 years
4. · Does not respond to his or her name
5. · Loses language or social skills
6. · Makes poor eye contact
7. · Doesn't seem to know how to play with toys
8. · Intently lines up toys or other objects
9. · Is firmly attached to one particular toy or object
10. · Doesn't smile
11. · May seem to be hearing impaired.
12. · Has problems understanding the speech of others
13. · Has difficulty engaging in the give and take when interacting with others
14. · Appears indifferent to others, often seeming to prefer being alone
15. · May resist attention or passively accept hugs and cuddling.
16. · Seems distant or oblivious to his or her surroundings
17. · Has uncontrollable temper tantrums, is aggressive or self-injurious.
    (This may include hair pulling, biting, head banging)
18. · Insists on sameness and routine
19. · Extreme under activity or over activity
20. · Uneven gross and/or fine motor skills
21. · Difficulty expressing needs and wants, verbally and/or nonverbally
22. · Repeats words or phrases back rather than responding appropriately to conversation.
23. · Laughs or cries for no apparent reason
24. · Plays in odd or unusual ways
25. · Expresses over or under sensitivity to pain
26. · Shows no apparent fear of dangerous situations
27. · Difficulty regulating emotions

Should your baby, toddler or pre-schooler exhibit any of these characteristics, especially over time, a prompt visit to your pediatrician is warranted to start a thorough evaluation. Resist the temptation to "just wait and see." Problems of this type may signal some type of disability, even if it is not autism. The earlier you’re able to rule out or establish a diagnosis, the faster you’ll be able to give your child the effective help he or she needs.

Early intervention in ASD can make all the difference.

Early Developmental Stages:

Toddlers : By age 3, most children are well on their way to learning language. The earliest verbal communication is babbling. Usually by the age of one, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when offered something unpleasant is clear about “no." Children with ASD are slower in learning to interpret what others are thinking and feeling. Subtle cues—whether a smile, a wink, or a grimace—may have little meaning. For example: "Come here" always means the same thing, whether the speaker is laughing and extending her arms for a hug or frowning, hands on hips.

Pre-school and early elementary : By age 5, most children understand that other people have different information, feelings, and goals than they have. An ASD child may lack this understanding, leaving them confused and bewildered. Their inability to view things from another’s point of view and seeming emotional immaturity, makes peer interaction very difficult, causing more frustration and problems in the group setting. They may cry in class or have verbal outbursts that seem “off” to those around them.

Myth vs. Fact about ASD :

Myth : All autistic children are exactly the same.

FACT: Autistic children can be on every end of the spectrum: low, moderate and high.

Myth: Children with autism aren’t attached to their parents or can’t show affection.

FACT: Research suggests that children with ASD are attached to their parents, even if the way they express it is difficult to "read." Many autistic children actually crave affection.

Myth: Children with autism never make eye contact.

FACT: Many do establish eye contact. It may be less than or different from the typical child, but many do look, smile, and express many other wonderful non-verbal forms of communication.

Myth: Children with autism do not talk.

FACT: Many develop good functional language. Others can develop other communication skills, such as sign language, pictures, computers, or expression via electronic devices.

An autistic adult… "I have quite clear memories of how I was as a non-verbal child. Sometimes it was frightening or confusing, but overall my experiences just "were" -- unjudged and unanalyzed."

 Myth : Autistic children are low functioning relative to the average population.

FACT: While many children with autism are mentally retarded, others have average or above average intelligence. IQ scores may be compromised due to the child’s communication problems.

 An Autistic adult… "When I was young, my parents were told that I was retarded. Later, all my problems were written off as part of being gifted. IQ testing is not a useful measure for autistic people. My own IQ has varied over 100 points. Autistic people tend to have more than the normal difference between skills and deficits. Ability or inability in one area should not be considered indicative of overall ability."

Myth : Autistic people have no emotion.

FACT: They experience all emotions, but with different intensities and modes of expression.

Myth: Children and adults with autism spectrum disorders do not care about others.

FACT: They often care deeply but lack the ability to spontaneously develop empathetic and socially connected behavior.

Myth: Children and adults with autism spectrum disorders prefer to self-isolate.

FACT: They often wish to socially interact but lack effective social interaction skills.

Myth: If a child has an autism disorder, he or she will not have any other disorder.

FACT: Autism Spectrum Disorders can and often do co-occur with other disorders.

Diagnoses of all possible existing conditions are critical.

Myth: Autism spectrum disorders get worse as children get older.

FACT: Autism spectrum disorders are not degenerative. Children are most likely to improve with specialized, individualized services and opportunities for supported inclusion.

Myth: All people with an autism spectrum disorder have “savant skills” like Dustin Hoffman’s character in “Rain Man.”

FACT: Most with autism spectrum disorders do not have savant skills. Some have “splinter skills,” which are areas of high performance that are not consistent with other skill levels.

Myth: Children and adults with an ASD cannot learn social skills.

FACT: They can learn social skills if they receive individualized, specialized instruction and training. Early intervention is most effective.

An autistic adult … "People tend to see us as abrupt people -- rude or downright offensive at times -- it is quite frightening". Today, there is improved understanding among people who are educated ...

Myth: The best place to educate a child with an Autism Spectrum Disorder is in a separate program designed for children with the disorder.

FACT: Educational and other services must be specifically designed for each person.

Myth: Autism spectrum disorders are something to be hidden in the classroom.

FACT: Even pre-schoolers are able to identify differences in peers. When they are not given appropriate information, they will draw the wrong conclusions. It’s critical to teach peers how to understand and interact successfully with children with ASD.

Myth: People with ASD cannot have successful lives as contributing members of society.

FACT: Many live and work successfully and contribute to the well being of others in their communities.

An autistic adult … "Some aspects of autism may be good or bad depending only on how they are perceived. For example, hyper-focusing is a problem if you're hyper-focusing on your feet and miss the traffic light change. On the other hand, hyper-focusing is a great skill for working on intensive projects. This trait is particularly well suited to freelancers and computer work ... In some cases, obsessive interests can lead to successful careers. My partner is now a computer programmer after a life long obsession with computers."

Myth: It is better to “wait and see” if a child does better rather than refer the child for a diagnostic assessment.

FACT: The earlier ASD is diagnosed and treated, the better the outcome.

How Our Parenting Program May Work for you and Your Autistic Child

The first question you might have is: “Can my child benefit from the Parenting Program?”

As the spectrum varies markedly, there is no one indicator, or list of skills we can provide you to answer that question fully. You know your child best. We suggest you look over our Parents Program carefully to determine if it meets your individual child’s needs.

Some questions you might ask yourself include:

Will my child sit for awhile, work, and interact with me, as the parent?
Does my child show an interest in music and story?
Can my child understand questions when posed to him or her?
Can my child do simple activities when directed?
Could my child benefit from using imaginative exercise?
Could my child be taught to learn from watching another child’s mistakes?
Could my child benefit from learning how to relax his/her mind and body?

If so, the Parent Program may be a beneficial adjunct you can use right in your own home as the Program is designed for elementary-age children (age varies according to maturity level) and focus specifically on those crucial areas – communication, socialization, control, and imagination – which are typically problematic for the autistic child. Camp MakeBelieve materials go right to the heart of improving social skills and emotional intelligence, including increasing awareness of feelings, behavior, consequences – and empathy. They are geared to stimulate the imagination, through art, music and play, offer effective anger management strategies and best of all, provide calm-down devices, when things start to spiral out of control.

Our strategies and activities can provide that one-on-one experience that can be customized to suit the child.

As the autistic child takes each new step in the series and moves closer to Becoming a Master of his Moods and behavior, he can rejoice in the progress and rewards he’ll reap with peers, family, the school and the community. The most special reward will be the increased self-esteem and self-confidence –

A foundation to build on...for a lifetime!

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Autism Resources