Preparatory Steps

Preparatory Steps

Certain treatment guidelines transcend techniques specific to the individual programs discussed in this book. Those 11 guidelines are described in this chapter.

Learn how to teach. Become an effective teacher and teach the student in his natural environment for as long as possible. A student's home is less restrictive than, for exam-pie, an institution, and it provides for more opportunities to acquire behaviors essential for increased independence. These behaviors range from basic self-help skills, such as going to the toilet, dressing and washing oneself, eating appropriately, and taking out the garbage, to more complex behaviors, such as crossing the street, forming attachments to parents and siblings, and meeting typical children in the neighborhood.

If you are the student's parent, make certain you are not excluded from learning how to teach. To become a competent teacher, you should be involved from the first hour on; do not make your start when programs become complex and difficult to teach. As a parent, you have the important task of extending treatment to most of the student's waking hours, including weekends, holidays, and vacations. Also, when you are adequately informed, you can make decisions about who can offer the best help to your child. There will likely be many professionals who will want to treat your child, but they may be unable to demonstrate effective treatment. Gaining your own knowledge about proper treatment is also important. Professional persons come and go; they may serve you now, but they may not be there in the future. If your child survives you, he will continue to need help. Therefore, begin to prepare for your child's future while both of you are young.

Another reason why parents should be actively involved in treatment is that most students do not reach normal functioning. If one-on-one intensive treatment is terminated for such students, data show that they may regress. For students who make moderate progress in treatment, there are indications that, as they become adolescents and adults, they may experience feelings of depression as they recognize they are different from typical individuals. However, if parents remain involved in treatment from early on, it is likely that they will be able to maintain and increase the gains the student has made because they can hire and train new teachers.

For students who do reach normal functioning, it is likely that they will not regress because they develop friendships with typical peers who help them continue to develop socially, emotionally, and intellectually. However, even for those who reach normal functioning, minor difficulties may persist after the intensive one-on-one treatment is terminated. An informed parent will be able to identify such problems and treat them. For example, a student may express reluctance to play with peers and a preference for playing alone on a computer. An informed parent will let the student have access to the computer provided the student plays with peers first. Increased skills in playing with peers may eventually make the social environment more reinforcing than the computer.

If for no other reason, parents should become involved in treatment because it may be demoralizing to be a passive observer and see relatively young persons with no parenting experience help the child make progress in reducing tantrums, increasing cooperation, and learning skills such as imitation, toy play, and language. To help avoid this scenario, it is best for parents to become involved at the outset of treatment. During the first hours of treatment, other persons will be present who are also beginners and receiving training for the first time.

Realize that improvement is slow. Know that some students progress rapidly, whereas others learn at a slower rate. It is important not to overstress the student based on hopes of a sudden 'breakthrough.' Reports of such breakthroughs may provide entertaining reading, but they achieve very little else. Through the process of working with students with developmental delays, teachers often learn a very important lesson: not only to accept, but also to respect persons with autism even if they are not 'perfect' or in possession of highly developed splinter skills. A student who works hard is likely to acquire dignity and equality with others, even if the student does not recover. A student's progress, however incremental and gradual, is likely to be a parent's best therapy.

Conquer guilt. Parents of typical children often feel guilty about not having done enough for their children, or about having done something that will eventually lead to problems. Parents of children with developmental delays are particularly prone to guilt and depression no matter how much evidence demonstrates they did not cause their children's problems. Guilt and depression can be very handicapping states, forcing a parent or teacher to relinquish control. Do not let the student frighten you into quitting; doing so will only hurt the student in the long run. Think of it this way: All of her life the student has failed to understand what responsible parents and teachers have wanted her to understand. Naturally, then, the student does not want to enter learning situations which, she reasons, will introduce her to more failure. The student's angry emotional outbursts may lead you to give in to her and allow her to escape the teaching situation, inadvertently strengthening her tantrumous behaviour. ^ 4. Form a treatment team. Typical persons learn all their waking hours; the student you work with should be equally provided with this opportunity. The difference between your student and a typical individual is that the latter picks up information in a more informal and incidental manner, whereas the person you work with needs a great deal more structure. The more hours of one-on-one treatment the student receives, the more progress he will make. We recommend that the student be provided with 40 hours per week of one-on-one behavioural treatment, and that gains made through this treatment be extended in a more informal way throughout the student's remaining waking hours. We also recommend that during the first 6 to 12 months of treatment, all teaching take place in the student's home environment, being extended into the community in gradual steps thereafter. If you are the student's parent, you may help provide some of the treatment hours, and you and other family members should help to generalize the skills acquired in the structured one-on-one learning sessions to the evenings and to different environments.

To take on such a large job, you need to form a treatment team. Forming a treatment team is an unusual task for most people, and it may initially seem daunting. However, once you start a system of recruitment, this task will likely become relatively simple and efficient. The three typical sources of prospective team members are local colleges or high schools, family members, and friends. Persons from high school or college may either work for course credit or for pay. If they work for pay, their hourly wage should be comparable to that of other paid positions advertised on campus. To recruit high school and college students, you may want to place ads in student newspapers and student employment offices, or post flyers near the departments of psychology, speech therapy, and education. A flyer might read as follows:

Position Available

Work with a team providing intensive behavioural intervention for a student with developmental delays. Experience in behavioural treatment helpful but not necessary. We will provide training.

Time commitment: 610 hours per week. Call 555-5555.

A more efficient way to recruit team members may be to locate faculty members in psychology, education, and related departments and ask them if you may give a 5- or 10-minute presentation in their class describing what autism and other developmental delays are like and the kind of help you need. If your student does not display too much disruptive behaviour, introduce the student to the class. If the student has already made some progress in treatment, show the class what he has learned and how these skills were taught. There seems to have been a large change in the interests of college and high school students over the last 50 years. They seem to have become more mature, career oriented, and compassionate in their attitudes toward individuals with developmental delays.

When persons express interest in working as a part of your team, have them meet with you at home and ask them questions about their experience with individuals of the same age as your student. If you like the way a person presents himself or herself, and if he or she seems easy to instruct and not full of predetermined opinions about how to teach, then that applicant is likely to make a good teacher. Try to avoid persons who are 'experts' in another area of treatment because they may be close-minded and thus very difficult to train.

Assemble a team of three to eight people to perform a total of 40 hours of treatment per week. To help avoid burnout, no one person should provide more than 4 to 6 hours of one-on-one treatment per day. Few persons are good at estimating when and if they will burn out; it typically occurs quite quickly, and the person who burns out may want to leave within a day or two. If a person works 6 hours in a row, then each hour should be interspersed with moving the student out of the one-on-one situation to more informal environments for the purpose of generalizing mastered gains. Generalizing treatment gains to the community is less intense than one-on-one treatment both for the teacher and the student, and it is less likely to result in burnout.

Learn how to manage your team. Try to arrange the work so that each person stays with the team for at least 6 months. If you have hired only two or three people, ask them to advise you 2 or 3 weeks before leaving the team, giving you the opportunity to train a new member without losing treatment hours. During this sort of transition period, it is ideal to belong to an organization of parents who have had similar problems and who have employed other teachers. Through such an organization, you are likely to find re-placement teachers because teachers are often able to work with more than one student. In addition, you may gain a larger pool of experienced teachers to draw from when recruiting new teachers than that provided by the sources mentioned earlier.

Learn how to train your team. You will make some progress by having each member of the team read this manual. However, it is highly unlikely that you will maximize the student's gains without consultation from someone already experienced in providing behavioural treatment. Some suggestions on identifying an experienced consultant and what to expect from such a consultant are provided in Chapter 34.

When with your team, be sure to provide ample positive feedback and refrain from harsh criticism. Working analogously with the saying 'One gets more bees with honey than with vinegar' is a good strategy. In addition, avoid singling out and praising one particular member of the team as the 'wonder aide.' Doing so may divide the team. Do not talk about a team member behind his or her back. Do not give lavish gifts, free dinners, and the like to the team; their salaries, course credit, and your appreciation should be enough. Do not become obligated to any one person beyond his or her work contract by accepting unusual favours such as babysitting or extra hours. By the same token, refrain from asking for such favours.

It is absolutely essential that the team meet together with the student weekly. During these team meetings, each member should work with the student in front of the team to get feedback regarding his or her performance. It is essential that this feedback be carried out in a constructive manner and that more positive than negative feedback is given. You want your treatment team to feel that they are important to your student's progress and that they are appreciated. Over time, the treatment team will become increasingly cohesive in that each member will strengthen the skills of the other members.

During weekly meetings, the student's gains and problems of the previous week are to be reviewed, difficulties demonstrated, and feedback sought on how to alleviate these difficulties. It is impossible for any one person to solve all the intricate problems the student will present. Rather, solutions to problems require group effort in which each person receives some reinforcement for contributing potential solutions. Weekly meetings should be work oriented and last for 1 to 2 hours. Socializing should take place after the meeting.

If a team member does not attend weekly meetings, repeatedly arrives late to treatment sessions, introduces new programs without consulting the team, resists feedback regarding treatment procedures, or complains about pay or other team members, have this person leave your team before he or she does any damage. Such a person is not sufficiently equipped to conduct the important work of teaching individuals with developmental delays. ^ 7. Be careful not to be misled about treatment outcome. Parents of children with developmental delays love their children as much as other groups of parents love their children, but they are probably more anxious and vulnerable than other parents when seeking help for their children. Anyone familiar with the history of autism treatment has become aware of the misleading statements and promises that helping professionals have made over the last several years.

As mentioned earlier, Chapter 34 provides some guidelines concerning the selection of qualified behavioural treatment consultants. At present, almost anyone can claim to be competent at delivering behavioural treatment for young children with autism. The fact is, however, that early and intensive behavioural treatment of children with autism is a specialty within the field of Applied Behaviour Analysis. To become proficient at delivering such treatment, a considerable amount of training is required. One does not reach proficiency by reading this or a similar teaching manual. Nor does one reach proficiency by taking a course in behavioural psychology, attending a workshop, or participating in a seminar. Before deciding on a consultant, carefully evaluate his or her credentials.

Most parents have gained some information about early and intensive behavioural intervention and may have been led to believe that 47% of all the children treated with this intervention reach normal educational, emotional, and social functioning. However, this statistic has been obtained only under the most optimal clinic-based treatment conditions. Workshop-based treatment is estimated to yield a recovery rate between 10% and 20% provided the workshop leader is qualified. The recovery outcome for workshops led by persons who are not qualified may not exceed 5% (see Chapter 34). Without a qualified workshop leader but with a team of involved teachers who work together and pool their resources, it is likely that the student will make steady progress, although it is not yet known to what degree. A student who works hard to get better and gain independence, however, is a joy to observe even if she does not reach normalcy.

Do not allow the inherent demands placed on parents through intensive behavioural treatment to jeopardize the marriage of the parents or their relationship with other children in the family. An intact family is a most important contribution to the student's development. Sometimes the mother, the father, or both parents become overly involved in their child's treatment; they think of nothing else and talk of nothing else. Other children, close family, and friends are neglected. Under these circumstances we have seen parents lose their personal relationship. The romance that brought them together and is essential throughout married life is suppressed. Such over involvement is dangerous because it may end in divorce.

Parents must take care of themselves and of each other. Take a vacation from autism every so often. We recommend arranging for respite care and leaving the house for 24 hours every 3 weeks or so. Check into a hotel some 60 miles away from home and forbid all talk about autism. The caretaker may call the parents' cell phone number only if absolutely necessary. No calls home should be made. Make no demands for intimacy; relax and let it happen naturally. If it does not, it may develop next time. Anticipate that the guilt about leaving home even for the short time of 24 hours will be strong. However, keep in mind that many or most children with autism are stronger than you might expect; coming home after 24 hours away and finding that all is well may be the best treatment for guilt. Some persons may suggest that the student's father or mother move away to a treatment facility with his or her child while the other parent remains at home some hundreds of miles away. It is difficult to maintain a marriage if the husband and wife see each other only one or two weekends per month. By the same token, treatment should not be received from or provided to a family who has to sell or mortgage their home to pay for services. This is too risky an investment when one considers that a student may not reach normal functioning but rather may require lifelong care. Enter the student in school after he masters the appropriate imitative, self-help, and language skills. In selecting a class for the student, visit several classrooms. The following points are important to consider when choosing a teacher and a particular classroom: (a) Rather than choosing a teacher who is waiting for maturational stages to be activated with mere exposure to educational material (a la Piaget), select a teacher who is challenging and prefers structure, (b) Avoid classrooms with several students who have developmental delays because they will not aid your student's development of appropriate behaviours, (c) Do not disclose to the teacher the student's formal diagnosis. Many teachers have been informed that autism and other developmental delays are progressively deteriorating conditions that cannot be altered, and many have been told that parents caused the student's problems. State instead that the student has a delay in language and social skills and needs exposure to peers who can talk and interact, (d) Ask if the student can initially attend the class for a short period of time (e.g., 1 hour for 1 to 2 days per week) and if a person who helps tutor the student can be present at that time, (e) Ask if you can give the teacher some tips once in a while about how to handle some of the student's more unusual idiosyncrasies, (f) Ask if you can call the teacher, and if he or she can call you, when problems occur.

If the classroom provides all of these conditions, then that classroom environment will likely be beneficial for the student. Once you and the teacher establish a close and trusting relationship, inform the teacher of the student's diagnosis. At that time, the teacher may comment that he or she suspected the diagnosis. Apologize for not having revealed the information earlier and, after stating your rationale, nothing else may need to be said.

If your requirements are not met once the student is enrolled, change classrooms or, if necessary, schools. Be optimistic that you will be able to locate the right teacher and classroom. It is a credit to our society that we are now more likely to accept those who are not typical, and many teachers and principals go out of their way to help integrate a student who is likely to provide them with numerous challenges and learning opportunities.

Build confidence and self-esteem. The programs outlined in this manual have been constructed so as to maximize success and minimize failure for the student, yourself, and your team members. With increased mastery of skills, it is not unusual to observe that a student prefers the teaching situation to wandering aimlessly.

Helping to solve a difficult problem and contributing something positive to future generations are basic motivations for most people working with individuals with developmental delays. This is likely to be true for you, your team members, and the student's classroom teacher. Anyone who comes to know the parents and teachers of students with developmental delays learns that these people have been given an enormous challenge to work with and meet. Their courage, compassion, and strength provide much hope for our future in a world so often beset by violence and intolerance.

Know the basic learning principles used through' out this manual. Discovery of these learning principles date back almost 100 years to, E. Thorndike's work at Columbia Teachers College aad wese initially encompassed under the term Trial and Error Learning, then the Law of Effect, then Instrumental Learning, and finally Operant Conditioning. The application of these principles has become known as Behaviour Modification or Applied Behaviour Analysis.

We observe and use operant learning principles every day because every day we modify the behaviours of others, and others in turn modify our behaviours. However, using operant learning principles effectively requires more than superficial knowledge, especially when trying to teach persons with developmental delays. This teaching manual describes the application of learning principles in considerable detail. The teaching steps are presented in everyday language whenever feasible, technical terms are described in detail, and parents and teachers learn to apply the procedures by carrying out the various programs. We recommend that the reader become familiar with certain introductory texts on learning theory and behaviour modification.

There is a large range in the complexity of programs presented in this manual. Part of the complexity of a given program is dictated by the individual differences that exist among individuals of the same diagnostic label and even among those individuals who obtain similar scores on standardized tests of IQ, language skills, or overall adaptive functioning. After reading this manual, you should be able to apply many of the teaching procedures appropriately in order to begin meeting the individual needs of your student. However, even a so-called expert in these procedures will fall short of providing optimal  help. No one person can solve all the problems that will arise, but there is strength in a team of collaborators who can help create solutions. Many parents and teachers of children with developmental delays have already begun behavioural treatment and are likely to provide significant help with solving many of the problems often encountered. Much of this is handled through the organization called FEAT (Families for Early Autism Treatment). We strongly recommend that the reader become familiar with Chapter 36, which includes important information on where to turn when seeking help.

The four chapters that follow introduce some of the difficult behaviours that students with developmental delays show when adapting to education, whether it occurs in the home or at school. Such behaviours include excessive tantrums and self-injurious behaviour (Chapter 5), self-stimulatory behaviour (Chapter 6), poor motivation (Chapter 7), and attentional difficulties (Chapter 8). Throughout this manual, numerous and detailed descriptions are provided concerning how to treat these difficult behaviours as they appear during the teaching of specific programs. Keep in mind, however, that not all students with developmental delays evidence all of the behaviours described in Chapters 5 through 8.