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?

Social-communication deficits are perhaps the most limiting aspect of autism. In terms of quality of life, it is particularly important to establish a functional communication system that your child can use to interact with others and to benefit from other forms of intervention and treatment. Some programs are effective at teaching children to use expressive language, but leave the child’s vocabulary limited to  labeling objects. This is not sufficient for the give-and-take of human communication. Instead, 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. Addressing areas of deficits 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 –  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 Pathologist.

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

Most experts agree that early intervention is associated with positive prognostic outcomes, so it is important to get your child started with an intervention program as soon as possible.

Your child’s treatment program should be of sufficient intensity and duration. Various professional sources vary widely with regard to the type, intensity, and duration of treatment. What is important is that the treatment plan is designed to fit your child’s specific needs and symptoms. Your child’s developmental specialist can recommend the optimal treatment plan for your child, which may include occupational, speech and language, and physical therapy, ABA, and medications. Treatment should not stop there. Engage in meaningful learning opportunities throughout the day.

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. While the involvement of siblings can be important, it is critical to be sensitive to their needs and not make unreasonable demands on them.

Generalizing skills to new environments and/or new people is challenging for many children with autism. There are two ways to improve generalization. The most preferable is to implement intervention programs directly in natural environments (e.g., home, school, and community). By teaching children in natural environments where they live, learn, and play, generalization training is essentially built into the intervention.

When teaching in the natural environment is not feasible for some reason, your child can be taught skills in a non-natural environment (e.g., therapy room or special education classroom). In such situations, it is important to ensure that a systematic plan for generalizing skills to the natural environment is in place before a new skill is introduced.

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. As such, it is critical to ensuring your child receives a high-quality treatment program. Even the most well-researched treatments are largely ineffective if they are not implemented with fidelity. This is similar to a medication not working properly if not taken as prescribed.

The Importance of Response to Intervention

Response to intervention is just as important as the initial diagnosis. A treatment that is successful for one child may not be as effective for another, so it is important that the intervention team accurately and regularly measure your child’s progress to ensure that the course of treatment is appropriate and effective. Measuring effectiveness does not need to be a long or frequent process. Think of this as the primary tool you have to benchmark your child’s development and document progress. Measuring effectiveness will help you determine whether you should continue or discontinue a given treatment.

How effectiveness is determined varies greatly based on the treatment and skill being considered. While some treatments by their nature take longer than others to yield improvements, do not be reticent to bring up any questions you may have to your child’s team. 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, by law, your family must be included in the assessment of your child. In addition, treatments that are selected should be sensitive to your family’s culture and ethnicity, fit within your family’s daily routines, and be practical so that you and your child are able to participate in all aspects of the intervention correctly.

Continuity of Care

Continuity of care refers to the extent to which intervention programs are coordinated across these treatment providers without lapses in treatment. Unfortunately, that doesn’t happen much in the case of autism in general, and is even less likely to occur in the case of a military family and autism. Continuity of care also extends to maintaining care and services when moving from one duty station to another. The Transitions section deals with those issues in more detail.

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 and working for different service agencies. Therefore, it is critical that the members of your child‘s team of treatment providers work together and maintain open lines of communication. For that reason, a “lead” therapist or agency is often selected to oversee the child’s overall program and coordinate interventions across therapists and service providers. Your child’s primary care manager or case manager may fill this role.

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