LIVING WITH AUTISM

Raising a child with autism requires support from family members, friends and professionals. It can help to build a “team” of people who work together to be sure your child’s needs are being met and that they are making progress toward their goals. The team should be focused on helping your child overcome their challenges and build upon their strengths and abilities.

Creating your team

Your child’s team will have lots of members. Team members focus on different areas of your child’s life. And they can help you make decisions about your child’s treatment, education and health.

Medical team

Your child’s primary care provider likely is a pediatrician who understands autism and developmental issues. Depending on your child’s needs, other medical team members may include:

Behavioral team

Behavioral therapists who provide ABA and other interventions play a critical role in your child’s treatment and development. Depending on the intensity of the primary intervention, there may be an intervention leader who will also structure treatment sessions that are provided by other therapists. Intensive intervention programs often start with a one- or two-day training course where individual therapists are trained by the primary intervention leader.

Related services team

Therapists and other professionals providing related services to your child should be included on your team as well. Related services your child might receive include:

All therapists working with your child should be communicating frequently and using a consistent method of teaching.

Managing your team

Your participation on your child’s support team is critical. Understanding your child’s treatment can help you use the interventions at home. Understanding treatment goals can help you monitor your child’s progress and evaluate team members.

Team communication

Open communication between your child’s team and your family is important. It ensures that everyone is on the same page about your child’s goals and progress. Ways to maintain consistent communication include:

Shared notebook/online document. Many families use a shared notebook to foster team communication. Each therapist records information after their session with your child. Other therapists can then read the notes before their own sessions. Parents can add information, too, so that all team members are informed.

Team meetings. Another way of maintaining communication is through regular team meetings. These can happen at your home, especially if your child’s services are home-based. These meetings should include as many team members as possible. This can help ensure that your child’s therapists are up to date on every aspect of treatment and that they are all working with your child in consistent ways. At team meetings, you can discuss what is and isn’t working and make changes to your child’s program, as needed.

Making therapies work for the entire family From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik, Ph.D., 2014.

Always be sure you select interventionists who will view the family as teammates and will include you in the determination of target goals – your child needs to learn skills that will help the family function, fit into your lifestyle and be compatible with your cultural and religious values. For example, a clinician may feel that it’s important to work on answering the phone, while the family may feel that toilet training is a much more pressing and immediate goal. Both goals may well be valid, but the family needs to have a say in prioritizing them.

Similarly, studies show that families who are required to implement drill-type interventions have greater stress than when less rigid interventions are incorporated into daily family routines. How well the family functions as a whole is just as important as how well the child with special needs is doing, and it’s your responsibility to work toward both kinds of success.

Technology and autism

Technology is a valuable tool in treatment and daily living for people with autism. Computers and devices like tablets and smart phones are helpful in many areas, including behavior tracking, scheduling and communication.

Many autistic people use technology to help with communication. Some parents worry that using a speech or communication device may prevent their child from developing speech. In fact, it’s the opposite: Research shows that using technology as a communication aid can help children increase their speech skills.

Talk with your child’s treatment team about how to use technology as part of your child’s treatment. They can help you evaluate what method may be best for your child.

Autism Speaks has developed an Assistive Technology for Communication Roadmap to help you understand different types and methods of obtaining assistive technology for your child. This tool can be found at autismspeaks.org/worksheet/assistive-technologycommunication-roadmap.

Strategies to support your child

There are a number of tools and strategies you can use in your daily life to help support your child. These strategies can help increase positive behaviors and limit challenging behaviors. Some of these include:

Positive behavior supports

Research has shown that the use of positive behavior supports (PBS) is an effective way to manage challenging behavior. PBS involves identifying the function of a problem or challenging behavior and then teaching the person new skills to help correct the behavior and respond with a positive one instead. It involves creating a structured plan that positively addresses behavior.

It is important to understand that most human behaviors serve a purpose and as a result, many of your child’s challenging behaviors have underlying causes. Work with your child and their team to try to identify these causes so you can develop a plan to teach them the positive skills and behaviors that can be used to respond to the problem.

Look at each situation from your child’s perspective – what is happening that may be causing them to respond in this way? Specific PBS systems should be put in place to respond to each problem situation or challenging behavior. Share your positive behavior support plans with your child’s school, after school program, etc. so that the approach can be used across all situations and settings.

Visual schedules

As previously discussed, one challenge faced by individuals with autism is their need for routine and strict adherence to schedules. Visual schedules are a great tool to help create a more structured environment for your child, which can help with preparedness, anxiety and challenging behaviors. They can help with your child’s understanding of time and transitions between activities and environments, as well as increase independence by allowing them to comprehend the sequence of events without your prompting.

Similarly, checklists can help manage your child’s time and prepare them in advance of situations that may present difficulties. They can use the checklist to understand what is happening and what is coming up. For example, if your family is flying somewhere, a visual schedule that shows each step of the air travel experience – trip to the airport, check-in, security, waiting at the gate, etc. – or a checklist of those steps can help prepare your child for the process and keep them engaged throughout the experience.