Intervention and Quality of Life

In preparation for your child’s future, you have already taken an important first step by seeking out information. If you learn as much as you can, visit schools and facilities offering intervention, talk to professionals and other parents, and consider all your options, you’ll be able to make an informed decision about the treatment options that most suit your child’s needs.

What Does My Child Need and How Do I Get It?

Children who receive a diagnosis of autism demonstrate impairments in three major areas: communication, social interaction, and repetitive/restricted interests. What your child needs, then, are interventions that directly address these three areas. It is particularly important to establish a functional communication system that your child can use to interact with other people. Many programs are very good at producing improvements in other behaviors, such as compliance, motor imitation, or even beginning academic skills. Others may be effective at teaching children to use expressive language, but the child’s vocabulary may be limited to labeling objects. It is critical that treatment programs put a communication system in place that teaches children to use it competently with their parents, siblings, other family members, peers, teachers, and other people in the child’s community. Social communication deficits are perhaps the most limiting aspect of autism. Addressing them early, consistently, and thoroughly is likely to have the most meaningful impact on an individual’s quality of life.

Who are Potential Members of the Intervention Team?

Intervention invariably involves more than one treatment and multiple providers, i.e., an intervention team. Several types of professionals and services should be involved in taking care of a child with autism. This team should be under the direction of one certified and experienced professional who will develop, organize, advocate for, and watch over your child’s specific program. The team may include some or all of the following professionals: Developmental Pediatrician, Child Psychiatrist, Neurologist, Board Certified Behavior Analyst, Child Psychologist, Special or General Education Teacher, Occupational Therapist, Physical Therapist, and/or Speech/Language Therapist.

Your child’s treatment program should include the following components:

While there may be differences of opinion on how best to treat autism, most experts agree that early intervention is critical. As mentioned earlier, the best prognostic outcomes are generally associated with early intervention, so get your child started with an intervention program as soon as possible.

Aside from starting early, the most important component of your child’s program may be treatment of sufficient intensity and duration, that is, the number of hours of intervention. Various professional sources recommend anywhere from 25–40 hours per week of early intensive behavioral intervention, but treatment should not stop there. Children with autism should be engaged in meaningful learning opportunities throughout their day. Also, while the number of hours is important, it is the quality of the intervention during those hours that is critical. In working with the provider, take steps to ensure that interventions are implemented properly and that the therapists working with your child are well-trained and supervised.

One way to increase the intensity of your child’s treatment program is to ensure that you and other family members are actively involved. Parent training programs, in which a treatment provider teaches you how to implement intervention procedures, are highly recommended. The goal is not for you to become or replace a therapist; it is to help maintain or increase the intensity of the desired treatment. Because you interact with your child regularly, teaching you how to best structure your interactions will enhance and support your child’s treatment program. Further, once you have received training, you will likely be able to train other family members, babysitters, teachers, and peers—particularly important and beneficial when new therapists are added to your team or if your family relocates. Finally, including other members of your family, such as your child’s siblings, may help them learn how best to interact and play with their sibling with autism, thereby further optimizing learning opportunities and the treatment program. However, when engaging siblings, it is important to be sensitive to how your child’s sibling(s) are currently coping and what their needs are as well.

Generalizing skills to new environments and/or with new people can be challenging for many children with autism. There are two primary ways to improve generalization. First, if your child is taught skills in a non-natural environment (e.g., therapy room or special education classroom), ensure that a systematic plan for generalizing skills to the natural environment is in place before a new skill is introduced. Teaching skills or behaviors that cannot be generalized are not likely very meaningful, so either ensure that a generalization plan is in place or consider whether or not it is necessary to teach the skill.

On the other hand, intervention programs implemented directly in natural environments (e.g. home, school, and community) are more often preferable. By teaching children in natural environments where they live, learn, and play, generalization training is essentially built into the intervention. So, generalization is more likely to naturally occur.

Treatment programs that are primarily implemented in natural environments likely include opportunities for children with autism to interact with their typically developing peers. Children with autism who are included in general education classrooms, for instance, may have numerous opportunities to talk with classmates. However, being physically close to peers and having opportunities to interact does not necessarily bring about social competence. The social deficits in autism often necessitate interventions that specifically structure interactions and teach children with autism how to interact with their peers. These interventions can take place in the classroom, on the playground, during play dates, or within community-based after-school activities.

Fidelity of implementation refers to whether interventions are implemented correctly. Even the most well-researched treatments will be largely ineffective if they are not implemented with fidelity. This is similar to a medication not working properly if not taken as prescribed. Fidelity of implementation, then, is critical to ensuring your child receives a high quality treatment program. Since treatments are often implemented by interventionists who may not have extensive training in autism, it is critical to ensure that interventionists understand what to do and demonstrate the ability to implement it in order to maintain intervention fidelity. Supervision is essential. In addition, the key to maintaining fidelity of intervention is to ensure that the necessary data are regularly collected.

The Importance of Response to Intervention

Response to intervention is just as important as the initial diagnosis. It is important that your child undergoes accurate and regular assessment to ensure that the course of treatment is appropriate and effective. Assessments do not necessarily need to be long, nor should they be done frequently. Think of them as the primary tools you have to benchmark your child’s development and document progress. Assessments will help you continue to identify the appropriate treatment goals and modifications needed for your child’s treatment plan.

The data you gather from ongoing assessment will provide critical information about whether an intervention is working and goals are being met efficiently, or whether an intervention is ineffective, should be discontinued, and/or another approach taken. While some treatments may take longer than others to demonstrate improvements, do not be reticent if you have questions. Time is of the essence in autism intervention, and you should be committed to only those treatments that are producing meaningful changes in your child. Finally, your family needs to be included in the assessment of your child. Treatments that are selected should be culturally sensitive, fit within your family’s daily routines, and be practical for your child and family to participate in all aspects of the intervention correctly.

Continuity of Care

Intervention invariably involves more than one treatment and multiple providers, i.e., an intervention team. Continuity of care refers to the extent to which intervention programs are coordinated across these treatment providers without lapses in treatment. Ideally, all of your child’s therapists would work for one agency to ensure that everyone is on the same page. That doesn’t happen much in the case of autism and is even less liable to occur in the case of a military family and autism.

It is far more likely that your child’s treatment team will be made up of a number of therapists with different backgrounds and approaches to intervention. The team may include some or all of the following professionals: Developmental Pediatrician, Child Psychiatrist, Neurologist, Board Certified Behavior Analyst, Child Psychologist, Special or General Education Teacher, Occupational Therapist, Physical Therapist, and/or Speech/Language Therapist. All of the aforementioned providers may work for different service agencies, posing challenges to maintaining continuity of care. It is critical, nonetheless, that your child‘s team of treatment providers works together and maintains open lines of communication to avoid conflicting therapies.

It may be helpful, then, to select a “lead” therapist/agency who is responsible for overseeing the child’s overall program and for coordinating interventions across therapists and service providers. Generally, this therapist/agency should be the one who has the most expertise in autism treatment programs and spends the most time with your child.

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