by Kirsta Grapentine

April is National Autism Awareness Month

In the 1998 movie Mercury Rising, a young autistic child cracks a governmental supercode by solving a seemingly unsolvable puzzle in a magazine. Similarly, the movie Rainman featured another autistic savant who could recite a myriad of baseball statistics, names and numbers from a telephone book and calculate at a moment's notice what day of the week any given date would fall on. Both movies introduced the American public to Autism, a complex disorder that covers a spectrum of behaviors.

Autism is part of a group of related neurological disabilities called Pervasive Developmental Disorders (PDD), which also includes Asperger Syndrome, Childhood Disintegrative Disorder and Rett's Syndrome. Autism is a severely incapacitating, lifelong developmental disability that typically appears during the first three years of life. It affects one in every 2,400 individuals -- although that statistic rises to 1 in 500 when the related PDD's are included. Autism is four times more common in males than females. It is found throughout the world in families of all racial, ethnic, and social backgrounds.

Autism is often referred to as a spectrum disorder because its symptoms cover a broad range of behaviors, combination of behaviors and range of severity. Two individuals with the diagnosis of Autism may exhibit entirely different behaviors and deficits. In general, Autism presents as markedly abnormal or delayed development of social interaction and communication, along with a very limited array of interests and activities. According to the DSM IV, to be labeled autistic, an individual must show:

A. A total of six or more behaviors, with at least two behaviors from area 1 and one each from areas 2 and 3:

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
   a) marked impairments in use of multiple non-verbal behaviors (such as eye contact, facial expressions, body posture/gestures)
   b) failure to develop age appropriate peer relations
   c) lack of spontaneous sharing with others (i.e. lack of showing, bringing, sharing and pointing out objects to others)
   d) lack of social or emotional reciprocity
2. Qualitative impairments in communication as manifested by at least one of the following:
   a) delay in or total lack of development of spoken or equivalent (sign or gestures) language
   b) marked impairment in ability to initiate or sustain conversation
   c) stereotyped and repetitive use of language or idiosyncratic language
   d) lack of varied, spontaneous make-believe play or age appropriate imitative play
3. Restricted repetitive or stereotyped patterns of behavior, interests and activities as manifested by at least two of the following:
   a) encompassing preoccupation with one or more stereotyped and restrictive behaviors that is abnormal either in intensity or focus
   b) apparently inflexible adherence to specific, nonfunctional routines or rituals
   c) stereotyped and repetitive motor mannerisms (hand flapping, head banging, etc.)
   d) persistent preoccupation with parts of objects.

B. Delays or abnormal functioning in at least one of the following, with onset appearing prior to age three:

1. Social interaction
2. Language used in social communication
3. Symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder (see article below).

Characteristics often associated with autistic children are avoidance of eye contact, extreme sensitivity to sound and tactile stimulation, diminished capacity to communicate, little interaction with others, hyperactivity or lethargy, mood swings, repetitive motion behaviors and lack of spontaneous play. Behaviors may change as children grow older, and seizure disorders and increased anxiety often mark the onset of puberty. Ten percent of autistic individuals display exceptional "savant" abilities (one who exhibits remarkable mental ability, while being severely mentally impaired), such as those shown by Raymond in the movie Rainman, compared with less than one percent in the rest of the population. Autistic behaviors show similarities to mental retardation, depression, Schizophrenia, Attention Deficit Disorder, Tourette Syndrome, Epilepsy, Obsessive Compulsive Disorder, Oppositional Defiant Disorder, deafness and speech disorders.

Although many children who are subsequently diagnosed as autistic initially develop normally, many resist physical and social contact with caregivers from an early age and/or appear as either very passive or overly agitated infants. An accurate diagnosis can only be given by a physician or specialist who may employ a checklist of behaviors at a child's 18 month check up to determine if there are any concerns. Key indicators of autism in toddlers are the absence or abnormality of play, and lack response to and development of communication.

Autism was first diagnosed only 54 years ago, and its exact cause is still a mystery. What is known is that it is biological, not psychological in nature, and is not caused by poor parenting or traumatic events, and is not a mental illness. Autism is a neurological condition that appears to effect the development of the limbic system, brain stem and cerebellum. Some theories indicate that Autism could be genetic in nature. Family members where one member has been diagnosed as autistic often show affective disorders, allergies and learning disorders similar to those seen with Autism. Identical twins are more likely to have Autism than fraternal twins. Other theories link Autism to prenatal exposure to viruses, vaccinations or indirect fetal contact with chemicals.

There is no known cure for Autism, however, the disorder is treatable. No one treatment works for every individual with Autism. Programs will vary depending on the age, behaviors and needs of the individual. Most autistic children do best with highly structured home and school routines. A well designed intervention will include some level of communication therapy, development of social skills, sensory impairment therapy and behavior modification. Other therapies may include the use of drugs (usually antidepressants), dietary modifications, and the use of symbolic (picture) language for those individuals who have severe language deficits. Because the needs of autistic children vary widely, schools or educational institutions should provide an individualized educational plan (IEP) that includes the family, student and helping professionals. Some children do best in specialized programs where they can received one-on-one attention; others can be mainstreamed into regular classrooms.

Most families benefit from working with a professional who is well trained in working with autistic individuals, and usually set up home routines and interventions that focus on identifying triggers for and the modification of a child's most challenging behaviors. A good program should be flexible, rely on positive reinforcement, be reevaluated on a regular basis, and support the transition of a child from school to home to the community. Additionally, families who have children who have been diagnosed with any of the Pervasive Development Disorders should create a supportive environment for themselves. Talking to other parents of autistic children, planned time away, self education and professional help are all productive methods of dealing with a sometimes overwhelming disorder.

Twenty years ago, most individuals with Autism were institutionalized. As more about Autism is discovered, early intervention and a focus on vocational and community living skills has made it so that even those individuals who have severe challenges can be taught skills that allow them to develop there fullest potential.

Resources:

Special thanks go to Craig Broome, an adoption specialist at Bethany Christian Service in Fremont for providing the groundwork for this article. Craig is the father of an autistic child and offers himself as a resource to parents and professionals who may have question about this disorder. His work phone number is (616) 924-3390.

Autism Society of Michigan: 1-800-223-6722.

When researching this article, I found use of the Internet indispensable. Type Autism in any search engine and you should get plenty of results. Sites for the Center for the Study of Autism, The Autism Society of America and One Mom's view for parents of children with autistic disorders were particularly useful.

Other Pervasive Development Disorders:

Asperger Syndrome is very similar to Autism, but differs primarily in the degree of impairment and cognitive ability (those with Asperger Syndrome have average to above-average ability; those with Autism may have some sort of mental retardation). The DSM IV diagnostic criteria for this syndrome is:

A) Qualitative impairment in social interaction as manifested by at least two of the following:

• marked impairment in the use of multiple nonverbal behaviors (eye contact, gestures, body postures)
• failure to develop age appropriate peer relations
• lack of spontaneous seeking to share enjoyment with others (showing, bringing, pointing)
• lack of social or emotional reciprocity.

B) Restrictive repetitive and stereotyped behaviors and limited interests as manifested by at least one of the following:

• preoccupation with stereotyped and restrictive interests or activities that are either abnormal in focus or intensity
• preoccupation with nonfunctional routines
• stereotyped and repetitive motions (hand wringing, finger twisting, etc.)
• preoccupation with parts of objects.

C) The disturbance causes clinically significant impairments in social functioning.

D) There is no clinically significant general delay in language (i.e. single words used by age 2, phrases used by age 3).

E) No clinically significant delay in cognitive abilities or age-appropriate self-help skills, and curiosity about the environment.

F) The disturbance is not better accounted for by another PDD or by Schizophrenia.

Childhood Disintegrative Disorder - The child exhibits normal development of communication, social interaction and play for at least first two years after birth. Subsequently, there is a clinically significant loss of previously acquired skills in at least two of the following areas: expressive or receptive language; social skills or adaptive behavior; bowel and bladder control; play; or motor skills. Also, there may be abnormalities in at least two of the following areas: qualitative impairment in social interaction; qualitative impairment in communication; or restrictive and repetitive patterns of behavior and interests. The disturbance also can not better accounted for by another PDD or by Schizophrenia.

Rett's Syndrome is a degenerative disorder which affects mostly (10:1) females. Individuals develop normally between 5 and 18 months, then show deceleration of head growth, loss of speech and social skills, development of repetitive motion behaviors and impaired motor skills. Severe mental retardation may also be present.

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Parenting With Love and Logic:

Teaching Children Responsibility

by Foster Cline, M.D., and Jim Fay

Over the next year, we will be exploring Cline and Fay's book, "Parenting With Love and Logic: Teaching Children Responsibility." We hope the insights presented here, and in their book, will help all parents to better understand their children -- and themselves.

Who's Really in Charge?

At some point, every parent has had this conversation with their child:

"Sarah, c'mon, it's time to wake up. If you don't get moving right now, you'll be late for school."

"Okay, mom, I'll be right there."

Fifteen minutes later...

"Sarah, I said it's time to get up! You're going to be late! Let's go!"

"I'm coming, I'm coming!"

Ten minutes later, after two more warnings from mom, 14-year-old Sarah is rushing around the kitchen.

"Mom, I'm going to be late! Why didn't you wake me up earlier? And where are my new jeans -- I told you to wash them last night! I don't have time to make a lunch -- can I have some money for lunch? And can you drive me to school -- I'm going to be late, and if I'm late I'll get a detention, and then I'll miss my softball practice, and the coach will be mad at me..."

What's mom's response to all of this? Well, if she's like many of us, she probably gave Sarah $5, apologized for not washing her clothes, drove her to school -- all the while nagging and lecturing about Sarah's irresponsibility in the situation.

Is Sarah listening? Maybe to every other word, if her mother's lucky. And is Sarah going to change because of her mother's nagging? Probably not, because in the end, Sarah got exactly what she wanted: a ride to school, lunch money, her mother's guilt -- control of the situation.

Cline and Fay point out that everything boils down to control. "We want to control our children," they say. "We want them to do what we want them to do, when we want them to do it. At times our kids fight us with a passion. Before we know it, we're locked into a control struggle."

The authors suggest gaining control through choices -- that is, offering your child choices that are appropriate to the situation, and allowing him or her to make the decision -- and thereby live with the consequences of their actions.

What would have happened, instead, if mom had said to Sarah, "Gee, I'm sorry you decided to get out of bed so late. Since you don't have time to make a lunch, I'll bet you'll be awfully hungry at dinnertime! And it's too bad you'll be late for school -- I know my boss doesn't appreciate it if I'm late for work, especially if it's because I overslept."

If this is the first time mom had reacted in this way, Sarah would probably have thrown a temper tantrum, blaming and accusing her mother for all of Sarah's problems, instead of taking responsibility for her own actions.

However, if mom had reacted this way before, Sarah probably would have stopped and reflected on her actions, perhaps thinking, "She's right, I should have gotten out of bed earlier; it's not her fault I was lazing around this morning, and now I'm going to be late AND hungry!"

Cline and Fay state, "Control is a curious thing. The more we give away, the more we gain. Parents who attempt to take all the control from their children end up losing the control they sought to begin with. These parents invite their children to fight to get control back.

"Giving even the smallest children a certain amount of freedom and control over their lives instills in them the sense of responsibility and maturity we want them to have. Independence helps children learn about the real world as their wisdom grows from the results of their decisions."

However, Cline and Fay point out, there can be a downside to handing over too much of the control. Children need limits and boundaries; giving them too much control can be disconcerting to even the most well-adjusted child. It is important to remember that children are not adults; just because we want them to be able to make the right decisions (or thereby live with the consequences of their not-so-good choices) does not mean they are emotionally capable of making all of their own choices.

Love-and-Logic Tip 20:
Warning: Good Parents Don't Give Warnings

Think of yourself as tooling down the freeway at 70 mph in a 55 mph zone. You see the multicolored lights of doom blinking in your rear-view mirror, and you think of one thing, and one thing only: "I'm going to get a ticket."

The cop saunters up to your car, nice as can be, writes the ticket, bids you adieu, and is on his merry way. He offers no hysterics, no anger, no threats. Just courtesy and a little slip of paper -- the consequences of your breaking the law.

As an adult, you would never think, in your wildest imagination, of telling him, "I'll be good, officer. Honest, I won't speed anymore," and having him say, "Well, okay. If you'll be good, I won't write you a ticket." That is the stuff of fantasy. But how often in our homes is our kids' pleading met with parental shilly-shallying?

The real world doesn't operate on the multiple-warning system, and neither should we. Parents who give a lot of warnings raise kids who don't behave until they've had a lot of warnings.

Why Choices Work

The authors note, "One reason choices work is that they create situations in which children are forced to think. Kids are given options to ponder, courses of action to choose. They must decide.

"Second, choices provide opportunities for children to make mistakes and learn from the consequences. With every wrong choice the children make, the punishment comes, not from us, but from the world around them. Then children don't get angry at us; they get angry at themselves.

"Another reason choices work is because they help us avoid getting into control battles with our children.

"Finally, choices provide our children with opportunities to hear that we trust their thinking abilities, thus building their self-confidence and the relationship between us and them."

What would have happened if Sarah's mom had said, "I can't drive you to school today because I'll be late for work," then relented because Sarah begged and pleaded and cried because of the damage it would do to her softball team?

"Dealing with choices and being held responsible for their own decisions, prepare youngsters for a lifetime of decision making that awaits them in adulthood. Effective parents, however, should offer choices only when they are willing to ensure that their children will be forced to live with the consequences."

Had Sarah's mother remained steadfast, and forced Sarah to live with the consequences of her actions (refusing to get out of bed on time, thereby making herself late for school), she would have taught Sarah a valuable lesson -- "you have made a choice, and now must deal with the outcome." Instead, by not following through, and bailing Sarah out at the last minute (after much cajoling on Sarah's part), her mother has reinforced the idea that Sarah does not have to be held accountable for her actions.

Rules for Giving Choices

The authors suggest the following five points when giving over some of that control to your child in the decision-making process:

• Always be sure to select choices that you as a parent like. Never provide one you like and one you don't, because the child will usually select the one you don't like.

  For example, you know that if you say, "Johnnie, either you get me your laundry right this minute, or you're going to wear dirty clothes all week!" your child is going to school in jeans that could stand up on their own.

• Never give a choice unless you are willing to allow the child to experience the consequences of that choice.

  Three days later, saying to Johnnie, "I told you that you'd have to wear dirty clothes all week, but I don't want you to be seen like that because it makes me look like a bad mother, so okay, give me your jeans and I'll wash them for you right now," is not an acceptable way to let Johnnie deal with the consequences of his earlier decision.

• Never gives choices when the child is in danger.
• Never give choices unless you are willing to make the choice in the event the child doesn't.
  Your delivery is important. Try to start your sentence with one of the following:
• "You're welcome to _____ or _____."
  

  "Feel free to _____ or _____."
  "Would you rather _____ or _____?"
  "What would be best for you -- _____ or _____?"

It is important that we continue to support our children, regardless of the decisions they make -- even when we don't necessarily like the outcome.

"Parenting With Love and Logic: Teaching Children Responsibility" by Foster Cline, M.D. and Jim Fay, is published by Pinon Press, P.O. Box 35007, Colorado Springs, CO, 80935. ISBN08910-93117. It is available at local bookstores.

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Kuweza
Supporting Families Who Adopt Children With Special Needs

What is the Kuweza Project?

The Kuweza Project is a program developed by Bethany Christian Services to meet the distinct challenges of families who adopt children with special needs. Its focus is to strengthen and preserve adoptive families by developing "padrinos sponsorships" (padrinos means godparent in Spanish) with relatives and friends who provide ongoing support. Padrinos sponsorships are formed through a unique, mutual commitment between the adoptive family and the padrinos. Bethany's role is to nurture those sponsorships by providing specialized instruction, family adoption camp opportunities, community-based workshops, activities and social outings, and ongoing access to support and respite opportunities.

The Five Elements of Kuweza

1. Padrinos Sponsorships. Bethany adoption workers help new and "experienced" adoptive parents identify relatives, godparents, friends, or other adoptive parents to serve as their "padrinos sponsors." The Kuweza program formally links the adoptive family with padrinos through Kuweza events and activities, and post-adoption education.
2. Post-Adoption Education. For families and their padrinos, Bethany offers post-adoption education that gives practical support and education about children with special needs. Instructors discuss how best to utilize planned, frequent respite through the Kuweza padrinos relationships with Kuweza Project support. The instruction includes experimental activities in which participants discover and enhance their strengths. Roles and commitments are defined, and participants complete a family manual specific to their unique situation.
3. Adoption Camp Opportunities. Bethany sponsors a 3-day, weekend retreat for both new and "experienced" adoptive parents and all of their children (adopted and birth children). Through games, arts and crafts, role playing, and outdoor activities, families address many issues common to most special needs adoptions. The padrinos join the family in this camp experience to affirm the commitment to padrinos sponsors.

   Bethany offers an annual week-long camp for adopted children with special needs. Kuweza staff are present throughout the entire week to ensure that the camp experience is tailored to these campers' unique needs. The camp also offers parents a week of respite.

4. Camp Scholarships. Bethany recognizes that planned time away from each other is healthy for adoptive parents and children. For families with a demonstrated financial need, scholarship funds from foundations and local donors are available to defray summer camp fees.

5. Community-Based, Post-Camp Activities. Bethany provides a series of workshops, support group meets, and social/recreational activities for adoptive parents, children, and padrinos.

These post-camp activities are designed to reinforce the knowledge, skills and relationships developed at adoption camp. Kuweza staff assist families and padrinos in maximizing the respite opportunities which sponsors provide to adoptive families.

Padrinos are encouraged to spend regular, planned time with the adoptive child in a variety of circumstances: going out for ice cream, staying overnight, taking in a ball game, going to a dental appointment, going fishing, or participating in Kuweza project events and activities.
All Kuweza program services are offered free of charge, and are open to families who have adopted a special needs child through Bethany, or any other adoption agency.

For more information, contact Bethany Christian Services at (616) 224-7550, or you can find them on the web at www.bethany.org