If you’re like many parents, your world changed when you first heard the word “autism” used to describe your child. And, like any good parent, your first inclination may be to learn all you can, find the best doctors, and take aggressive action to fix the problem. Before you launch yourself into action, though, you might want to get a quick overview of what you’re letting yourself in for.

Thought you’d read up on autism in just a few days? Truth is, plenty of people wind up spending unending weeks and months reading every website, blog and book…attending every conference…and at the end, they’re more confused than when they started. Yes, it’s a good idea to inform yourself about the options. But one or two good books (I recommend the Autism Guide for Dummies by Steven Shore) will give you a good gist without overloading you with 10,000 different opinions about everything from causes to treatments to adult life with autism.

There are over two dozen theories of what causes autism. Most are supported by at least one research study. A few possibilities — cell phones, WiFi, pitocin, mercury poisoning, older fathers, artificial dyes and sweeteners. In short, unless your child is actually suffering from a physical problem such as a food allergy or lead poisoning (and it’s worth your while to check into both), sweating the causes of autism will probably drive you crazy.

Of course, it’s a good idea to reach out and get to know other parents who are in your situation especially as you look into local therapists, schools, funding, and so forth. Be aware that parents with autistic children are often passionate about the therapists and treatments they’ve selected. And it’s easy to get overwhelmed as parents insist that their approach is the only approach. The truth is that no one knows the best approach for your child.

As you enter the autism world, you will meet teachers, parents, doctors and therapists who are absolutely certain they know what’s best for your child. With all the best intentions in the world, they will absolutely insist that you take your child to Dr. X, or travel hundreds of miles for the cure offered by Dr. Z. Nod politely, take notes, and do your own research. If the treatment sounds too good to be true, costs too much money, or has no research behind it, you’re under no obligation to say “yes.” Nor are you under any obligation to report back to the insistent individual in your life.

In the best of all worlds, treatments are selected on the basis of multiple independent double-blind studies. If only that were possible in the autism world! In fact, few treatments for autism have been tested in this way — and even those that have are questioned based on the quality of the research. That doesn’t mean that none of the treatments are helpful; only that they haven’t been fully researched. As a result, it’s probably worth your time to look into several of those that seem most available and relevant to your child.

It’s easy to obsess on autism. In fact, it’s surprisingly easy for parents, especially moms, to focus almost entirely on their child’s autism. Unfortunately, obsession can create more problems than it solves. More than one marriage has fallen apart as the result of one partner’s becoming too focused on autism to attend to his spouse. Many households have gone broke in the attempt to provide every treatment, no matter how costly or obscure. And it’s common for brothers and sisters of children with autism to feel unfairly neglected by parents who seem to care only about supporting a disabled sibling.

Parents are usually good at observing, describing and understanding their children. Parents also, of course, need to advocate for their children in school and elsewhere. But even mothers don’t always know what will work for their child and often a teacher or therapist will discover a talent, need, ability or challenge that surprises you. In short, maternal instinct is wonderful, but it has its limits. And by insisting that you always know what your child needs, you may limit the options available to him or her.

There is an understandable desire to see results from your efforts. And with so much emphasis on early intervention, parents often want to see their children “fixed” right away. But it’s best to avoid the temptation to leap into multiple therapies with the hope that SOMEthing will work. Not only will you and your child be exhausted, but it may be impossible to know what’s really working. Remember that there really is no “window of opportunity,” and your child will continue to learn and grow throughout his life.

Despite media hype to the contrary, it is extremely unusual for a child to be accurately diagnosed with autism and then “recover” perfect normalcy. Much of the time, though, if your child is receiving solid 1:1 therapy, support, and love, he will develop skills and relationships and continue to do so throughout life.In other words, treating autism isn’t about rushing to a cure. Instead, it’s about finding a set of supports and a way of life that will work, with tweaks and adjustments, over time. No matter how quickly you move, and no matter how much money you spend, your child with autism is likely to remain autistic with all the ups and down (and yes, there are “ups”) that go with that diagnosis.

If you can, take time to enjoy your child, your mate, your family, your life. Get a little fresh air. Remember, if you can, that your child is not in danger of life or limb, and that he is still the same person you have always loved.

What’s the best sport for a child with autism? As with every child, the best sport is the one your child enjoys and excels at. That said, though, autism does impair social and communication skills and may have a negative impact on gross motor coordination. That means “typical” team sports such as soccer, basketball and hockey may be particularly tough. Individual sports, however, may be just the ticket.

Swimming is a wonderful sport for most people, including children with autism. Kids who have a tough time with ball-handling skills can do well with basic strokes and typical water play. What’s more, there is no reason why a kid with autism can’t take part in a swim team especially since swim team members compete individually.

Horseback riding is pricey. That aside, though, it’s a terrific sport for kids with autism. In fact, many autistic kids ride horses as a therapeutic activity (as such it’s termed “hippotherapy”). It’s not unusual for autistic kids to find it easier to communicate with animals than with people — and many autistic children excel at horsemanship.

Strangely, Americans teach their youngest children to play complex team sports like soccer while only high schoolers seem to compete in running and jumping! For kids with autism, track and field may be a terrific outlet. Track events require fewer non verbal communication skills than most team sports, yet kids who excel at track are valued team members.

Even though it’s loud, bowling seems to be a natural sport to many kids with autism. Perhaps it’s the repetition — bowl twice, sit down. Or maybe it’s the satisfaction of seeing the pins come crashing down. Whatever the reasons, bowling is a great sport for social events that include kids on the autism spectrum.

For many people with autism, the peace and quiet of the natural world is a great stress reliever. Hiking, which can be an individual or group activity, is an easy way to get exercise and enjoy nature without the pressure of intense social communication. Fishing is another sport that may be of interest to an autistic individual who enjoys the natural world.

Bike riding can be tough for kids with autism, since balance may not come naturally. Once the basic skills are mastered, though, cycling can be a wonderful way to enjoy the outdoors. Like most of the sports described above, cycling can be enjoyed alone or in a group, just for fun or competitively.

While martial arts aren’t sports in the typical sense, they are physical outlets. They also combine the elements of predictability and structure with the challenges of physical interaction with other people. For many kids with autism, the martial arts are a wonderful way to build physical skills along with self-esteem.

If you’re hoping to get your child with autism involved with team sports, a good way to get started is by playing together just for fun. Whether you’re shooting baskets, tossing the ball back and forth, or learning to skate, you’ll be building both physical and social skills if you do it together. In the long run, it’s experiences like shooting hoops with dad (even when the hoop is lowered) that help build parent-child connections.

What are Life Skills?

Life skills include a wide range of knowledge and skill interactions believed to be essential for adult independent living (Brolin, 1989). At present, many students with handicaps have special needs that are not being met. These students require education and support to learn these necessary behaviors. They must be able to dress and groom properly, use appropriate table manners, make decisions about money, and use transportation to get to work. The three major skill areas that need to be addressed are daily living, personal/social, and occupational skills. 

What are Daily Living Skills?

Many students with disabilities will marry and raise families. The majority will probably earn modest salaries; therefore, it is crucial that they learn how to manage a home, family, and finances as effectively as possible. Some states require that these skills be taught to students with special needs. Instructional responsibility lies with special educators, regular educators, parents, and peers. The following skills are some that have been identified as essential for independent adult living (Brolin, 1989): 

Managing Personal Finances

• Count money and make correct change. 
• Manage a savings and checking account. 
• Maintain a personal budget and keep records. 
• Demonstrate personal finance decision-making skills. 
• Make responsible expenditures. 
• Calculate and pay taxes. 
• Use credit responsibly. 
• Pay bills. 
• Deal with renting or leasing.  

Selecting and Managing a Household

• Perform or arrange for home maintenance. 
• Perform housekeeping tasks. 
• Plan and prepare meals. 
• Fill out warranty cards for new appliances and mail them.   

Caring for Personal Needs

• Exhibit proper grooming and hygiene. 
• Dress appropriately. 
• Obtain health care. 
• Avoid substance abuse. 
• Demonstrate knowledge of common illnesses, prevention and treatment. Maintain physical fitness, nutrition and weight. 

Safety Awareness

• Identify safety signs. 
• Identify unfamiliar odors. 
• Identify unfamiliar sounds. 
• Demonstrate knowledge and ability to evacuate a building in an emergency. Read and understand basic safety procedures. Obey safety rules when walking during the day or at night. 

Raising, Preparing, and Consuming Food

• Purchase food and plan meals. 
• Clean food preparation areas. 
• Store food properly. 
• Prepare meals, read labels, and follow recipes. 
• Demonstrate appropriate eating habits. 
• Plan and eat balanced meals.   

Buying and Caring for Clothing

• Wash clothing. 
• Purchase clothing: Demonstrate knowledge of prices and sales. 
• Iron, mend, and store clothing. 
• Demonstrate use of dry cleaners and laundromat.   

Exhibiting Responsible Citizenship

• Demonstrate knowledge of civil rights and responsibilities. 
• Get legal aid. 
• Report a crime. 
• Register with Selective Service at age 18. 
• Demonstrate knowledge of local, state, and federal governments. 
• Demonstrate knowledge of the law and ability to follow the law. 
• Demonstrate knowledge of citizen rights and responsibilities. 
• Vote.  

Using Recreational Facilities and Engaging in Leisure Activities 

• Demonstrate knowledge of available community resources. 
• Choose and plan activities. 
• Demonstrate knowledge of the value of recreation. 
• Engage in group and individual activities. 
• Plan vacation time. 
• Plan a social event. 
• Engage in hobbies, sports, music, arts and crafts.   

Getting Around the Community

Differentiate between right side and left side, front and back, to demonstrate location. Demonstrate knowledge of traffic rules and safety. Demonstrate knowledge and use of many means of transportation including carpools. Understand and use a map. Drive a car; obtain a learner’s permit, then a driver’s license. Obtain car insurance. 

What are Personal/Social Skills?

Personal and social skills are critical in keeping a job and maintaining friendships. Learning to get along with others is a challenge for everyone. Lack of appropriate personal and social skills is one of the most frequently cited causes of termination of employment. Students with learning problems often do not learn by observing. Skill instruction in this area should include the following: 

Achieving Self-Awareness

• Identify physical and psychological needs. 
• Identify interests and abilities. 
• Identify emotions. 
• Demonstrate knowledge of physical self. 
• Demonstrate proper care, use, and maintenance of prosthetic devices or sensory aids required. Use appropriate methods to cope with stress. 

Acquiring Self-Confidence

• Express feelings of self-worth. 
• Describe others’ perception of self. 
• Accept and give praise. 
• Accept and give criticism. 
• Develop confidence in self. 
• Identify and distinguish the proper way to answer and use the telephone. Wear appropriate apparel, using clothes or uniforms to fit social and work situations. 

Achieving Sociallly Responsible Behavior

• Develop respect for the rights and properties of others. 
• Recognize authority and follow instructions. 
• Demonstrate appropriate behavior and social etiquette in public places and when dating or eating out. Demonstrate knowledge of important character traits. Recognize personal roles. 

Maintaining Good Interpersonal Skills

• Demonstrate listening and responding skills. 
• Establish and keep close relationships. 
• Make and keep friendships.  

Achieving Independence

• Do things without help. 
• Accept responsibility for actions. 
• Get around the community and be able to travel. 
• Cope with changes in travel schedule. 
• Cope with being lost. 
• Follow travel safety procedures. 
• Choose friends. 
• Get to school on time. 
• Decide what to wear.   

Achieving Problem-Solving Skills

• Seek assistance when needed. 
• Recognize problems. 
• Anticipate consequences. 
• Develop and evaluate alternatives. 
• Develop goals, solutions, and plans.   

Communicating WIth Others

• Recognize and respond to emergency situations. 
• Communicate with understanding. 
• Demonstrate knowledge of social cues and the subtleties of conversation, both verbal and nonverbal. Listen to others. 

What are Occupational Skills?

Between 70% and 80% of students with disabilities are unemployed and underemployed following graduation. Educators and parents still have much to do in this area. Early educational efforts need to be directed toward the following skill areas: 

Knowing and Exploring Occupational Options

• Explore occupational possibilities. 
• Identify the rewards of work. 
• Locate sources of occupational and instructional information. 
• Identify personal values met through work. 
• Identify societal values met through work. 
• Classify jobs into categories. 
• Investigate local occupational and instructional opportunities in the community; make site visitations. 

Selecting and Planning Occupational Choices

• Make realistic occupational choices. 
• Identify requirements of appropriate and available jobs. 
• Identify occupational aptitudes. 
• Identify main occupational interests. 
• Identify major occupational needs.   

Exhibiting Appropriate Work Habits and Behavior

• Follow directions and observe regulations. 
• Recognize the importance of attendance and punctuality. 
• Recognize the importance of supervision. 
• Demonstrate knowledge of safety. 
• Work with others. 
• Meet demands for high-quality work. 
• Work at a satisfactory rate.   

Seeking, Securing, and Maintaining Employment

• Search for a job. 
• Apply for a job. 
• Interview for a job. 
• Maintain postschool occupational adjustment. 
• Demonstrate knowledge of competitive standards. 
• Know how to adjust to changes in employment.   

Exhibiting Sufficient Physical and Manual Skills

• Demonstrate stamina and endurance. 
• Demonstrate satisfactory balance and coordination. 
• Demonstrate manual dexterity. 
• Demonstrate sensory discrimination.   

Obtaining Specific Occupational Skills

• Attend prevocational learning stations or centers. 
• Take advantage of in-school work experiences. 
• Take advantage of volunteer experiences. 
• Serve in community rotations. 
• Take advantage of work/study services. 
• Take advantage of the Job Training Partnership Act (JTPA). 
• Attend vocational classrooms. 
• Obtain special vocational education. 
• Obtain on-the-job training. 

What can the Schools do?

Schools can require an entry and exit plan for every student with learning problems wherein the life skills listed here are completed prior to graduation. At present, too many educators continue to use the same old approaches with a nonfunctional curriculum. Educators must become advocates for each child with special needs and stress “hands-on” life skill mastery. 

References

Brolin, D. E. (1989). Life Centered Career Education: A Competency Based Approach (3rd ed.). Reston, VA: The Council for Exceptional Children. 

Edgar. G. (1988). Employment as an outcome for mildly handicapped students: Current status and future direction. FOCUS ON EXCEPTIONAL CHILDREN, 21(1), 1-8 (EJ380199). 

Rusch, F., & Phelps, L. A. (1987). Secondary special education and transition from school to work: A national priority. EXCEPTIONAL CHILDREN, 53, 487-92. 

Philosophy of PRT

Before discussing PRT in more detail, it’s important to mention the underlying philosophies of the approach. First, intervention is implemented in natural settings to maximize the likelihood of producing a normalized developmental trajectory. This may seem obvious to those who read the literature showing that intervention in more clinical, segregated or analog settings results in difficulties with generalization, slower academic gains, less socialization and a greater challenge getting the children on a typical developmental trajectory. However, many families and practitioners are faced with schools and community settings that just don’t embrace the idea of inclusion. It’s often an uphill battle to get a child into (and keep a child in) regular education settings, afterschool community activities and summer recreational programs. PRT emphasizes inclusion—that all children should be educated and involved in environments they would be in if they didn’t have a disability.

A second underlying philosophy relates to family involvement. First, families take an active role in the development of intervention goals and the implementation of procedures to achieve these goals. Intervention is coordinated across all settings, with parents learning, through practice-with-feedback, to implement the procedures. We’ve learned from our research that the procedures need to be incorporated into everyday routines and activities to decrease parental stress and to maximize the normalcy of developmental gains. Assignments that require parents to take time out of their busy schedules to sit down and drill their children actually increase stress and can produce artificial responses. We can’t overemphasize the need to reduce parental stress, which we have not dealt with adequately as a society. Stress indexes indicate that parents of individuals diagnosed with autism experience very high levels of stress, which are very difficult to reduce. This may, in part, relate to society’s lack of willingness to fully include and support children on the spectrum in schools and other community activities. Parental stress may also relate to the difficulties, and lack of proper training and support, in raising a child who is affected by the disability in many areas. And parents of older children worry about what will happen to their child after they are no longer able to care for them. Will others love them as much they have, treat them with respect and dignity, and advocate for them? Our goal is to help families reduce their stress, enjoy full and happy lives with the support of the community, create more positive long-term outcomes and help adults on the spectrum have lifestyles that their parents feel good about.

The third aspect of PRT is identifying pivotal areas of need in children, so that the intervention is more effective and efficient.

Motivation

The first important pivotal area discovered was motivation. Early on, we were working on teaching speech to nonverbal children using a drill-type format in a structured setting with flash cards and a variety of treats (usually edibles) as rewards. While some children developed verbal communication using these procedures, a fair number remained nonverbal and/or failed to show spontaneous generalized gains. Also, we noticed that most of the children didn’t seem happy, nor did their interventionists. At that point, we began a mission to develop procedures for making learning fun. We stumbled across a number of individual components that improved the children’s rate of learning and resulted in better affect—the children (and interventionists) smiled more, seemed more interested and were more engaged during the teaching sessions. The procedures included giving the child a choice of materials and activities, varying the tasks instead of utilizing repeated drills, incorporating easy tasks with more difficult ones so the children would feel a sense of accomplishment, rewarding any attempts the child made, and tying the rewards into the task itself so that engaging in the target behavior would be naturally rewarding. We threw out the flash cards and bought a whole bunch of fun activities and games, which we provided contingently when the child said a word or made an attempt at a word. In a sense, this made the difficult challenge of learning communication fun. Because these new and improved techniques closely resembled the way typical children learn language, we titled our first publication “A Natural Language Teaching Paradigm” (Koegel, O’Dell, & Koegel, 1987). These procedures were far more effective in terms of communication gains, with over 90 percent of young children acquiring functional verbal communication as a primary means of communication. Since that time, the same motivational procedures have been effectively applied to a host of different behaviors in such areas as play, academics and socialization. Because the motivational procedures are effective in so many areas beyond communication, the intervention, which dramatically improved all of the symptoms and the overall condition of autism, was re-named “Pivotal Response Treatment.”

Social Initiations

Since that initial research, we’ve focused on finding other pivotal areas. We discovered another important pivotal area by retroactively looking at tapes of adolescents and adults with autism when they were in preschool. After many years of analyzing boxes full of tapes and looking at countless different behaviors, we found that preschoolers who initiated interactions with their parents had much better long-term outcomes than those who didn’t. That is, the children who exhibited lots of initiations made significantly more progress throughout their lives, often getting jobs and/or going to college, and along the way making friends, having sleepovers, talking on the phone, getting invited to birthday parties and play dates, and so on. In contrast, the children who had few or no initiations as preschoolers were more likely to later live in residential settings, have few or no friends, be unemployed, not attend college, and often be disruptive, aggressive or self-injurious. Following that discovery, we began a line of research designed to teach young children with autism various types of initiations. Our longitudinal data suggest that initiations can be taught, and once learned, can produce more positive long-term outcomes for children. Although this is a new line of research, we are optimistic that initiations can make a huge difference for individuals with autism, and thus appear to be pivotal.

Self-Management

Self-management is another pivotal area we’ve researched. There comes a time in everyone’s life when they have to take responsibility for themselves. For typical children, this may begin early on, and by the time adolescence comes around, kids are pretty independent. Unfortunately, many individuals on the spectrum remain dependent on their parents or care providers throughout the lifespan. Self-management procedures have been effective in creating independence and decreasing the need for constant adult vigilance. To implement self-management for young children, we can restructure the way that we provide consequences, simply by asking them how they think they did before giving them feedback. As individuals on the spectrum grow up, check lists can be developed. Selfmanagement procedures can be programmed for just about any behavior, from reducing repetitive behaviors in full-inclusion school settings, to hygiene, to improving socialization in community settings. Even for nonverbal individuals, self-management can be accomplished by using pictures. Again, self-management appears to be pivotal—when a person can manage his or her own behaviors, widespread improvements in other areas are evidenced.

Responding to Multiple Cues

Learning to respond to multiple cues in our complex world, especially in the context of joint attention, also seems to be pivotal. A failure to respond to multiple cues (also called “overselectivity”) used to be a huge problem when teaching took place in isolated settings. Those settings were so different from the real world that often the kids got hooked on irrelevant cues. But some children, even those who are included, still need work on attention to multiple cues. For instance, when the teacher says, “Take out your book and pencil, and turn to page 49,” the child who only takes out his or her notebook may need to work on responding to more cues. One way of working on responsiveness to multiple cues is to provide them in the context of everyday activities. For example, if the child is coloring a picture, the teacher can put out different colored pencils, pens, markers and crayons, then ask the child to color the house with a brown marker. The child then has to respond to all of the relevant cues. In regard to multi-step directions, the teacher can gradually and systematically work up to longer instructions. When motivational procedures and multiple cues are simultaneously addressed, the children begin to develop joint attention and shared affect, which is important developmentally.

Empathy

A current pivotal area that we are researching relates to empathy. While many argue that individuals with autism don’t have empathy, we disagree. Our preliminary research suggests that the children may have difficulty verbally expressing empathy, but not in having empathy per se. Expressions of empathy are complex in terms of social interaction, pragmatics and linguistic demands. Individuals with autism who are not exposed to (and provided intervention in) natural contexts may have limited opportunities to learn how to respond empathetically. That’s another good reason for inclusion. So, breaking it down, let’s say someone stubs a toe and says “ouch!” In order to express empathy, a person first has to be tuned in enough to realize that something unfortunate has happened. Next, the person has to have the social knowledge to know that a response is desirable under the circumstances. Making a verbal response requires a considerable amount of linguistic information, which may include commenting on the situation and asking a question, such as “Gosh, that must have hurt; are you okay?” On top of that, the appropriate pragmatics, such as a look of concern, is helpful if a person is going to seem sincere. Finally, when the person who got hurt responds, then the whole thing starts over again. It’s complicated, but can be taught. And the results are suggesting that the empathy was there, but expressing it was difficult. We usually start by setting up situations that require an empathetic response, such as saying, “Gosh, I’m in such a bad mood” or “I had a great weekend.” Oftentimes, individuals on the spectrum will make a comment, such as “Oh, really?” or “Oh!,” or they might not respond at all. The next step is to help them learn a response, such as, “That’s too bad; is there anything I can do to help?” or “Wow! You had a fun weekend. What did you do?” These types of empathetic responses express interest and keep the conversation going. Again, because these types of responses make such a difference in social conversation and the development of relationships, they appear to be a pivotal area.

Conclusion

In closing, we are continuing our search for pivotal areas so that intervention for individuals on the spectrum is more effective and less time consuming. Too often, individuals with autism participate in programs that don’t incorporate motivational procedures, so we see a variety of challenging behaviors to escape or avoid the sessions. When motivational components are included, people learn faster, are happier and exhibit much less disruptive behavior, and there are lower levels of family stress as well. Importantly, the children appear highly motivated to engage with others, greatly improving their overall developmental trajectories. The effectiveness of PRT has been documented in published research studies in our clinics and replicated in other independent clinics with a variety of different research designs and large numbers of participants, thus achieving the level of standards recommended by the American Psychological Association, American Academy of Sciences and National Institutes of Health. The goal of PRT is to develop scientifically sound, targeted intervention procedures that children and families find accessible and enjoyable and that result in widespread improvements in individuals with autism.

Reference

Koegel, R.L., O’Dell, M.C., & Koegel, L.K. (1987). A natural language teaching paradigm for nonverbal autistic children. Journal of Autism and Developmental Disabilities, 17, 187-200.

According to study author Dr. Julie Daniels, “our research shows that mothers and fathers diagnosed with schizophrenia were about twice as likely to have a child diagnosed with autism. We also saw higher rates of depression and personality disorders among mothers, but not fathers.”

1,237 people born between 1977-2003, who had been diagnosed with autism before the age of ten, were considered for the study. The parents of these children were subsequently studied, primarily to see if they had ever been hospitalized for a mental disorder, and at what point(s) in their life the hospitalization occurred. “The association was present regardless of the timing of the parent’s diagnosis relative to the child’s diagnosis,” according to the study. The fact that the association was for all times of diagnosis seems to eliminate the possibility that parents develop mental disorders as a result of raising an autistic child, and that autism may have a basis in the chemical imbalance of the parents.

Autism affects more than one million children in the United States, with as many as one out of every 150 children estimated to suffer from the condition. While much research has been done on autism, it’s causes and actual mechanisms are poorly understood, and there is little in the form of treatment or prevention to deal with the disease. Understanding the biological roots of the disease within many autistic children’s parents could potentially lead to a better understanding of autism, and maybe a better way to treat or prevent it.

Source: Defeat Diabetes Foundation: Lane, Patric. Daniels, Julie. Pediatric press release. May 2008.