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.

Autism and Wandering

A 2012 study from the Interactive Autism Network confirmed that nearly half of all children with autism have attempted to wander or bolt from a safe, supervised place. Safety is a critical part of everyone’s life at home and in the community. Being aware of surroundings and taking precautions to stay safe are even more important for people with autism and their families. Work with your child’s treatment team to create a safety plan for your child.

Wandering, or leaving a safe place alone, is a major concern in the autism community. For information about safety and wandering, visit autismspeaks.org/safety. Here are some tips to help prevent and respond to wandering.

Secure your home.

  • Contact a professional locksmith, security company or home improvement professional to help you make your home safe and prevent wandering. Ask about using various safety tools, such as:
  • Secure dead bolt locks that require keys on both sides
  • A home security alarm system
  • Inexpensive battery-operated alarms on doors
  • Hook and eye locks on all doors above your child’s reach
  • A fence around your yard
  • Printable stop signs on doors, windows and other exits

Use a locating device.

Check with local law enforcement to see if they offer any type of safety program or resources for children and adults prone to wandering, such as Project Lifesaver. These locating devices are worn on the wrist or ankle and can help find an individual through radio frequency. Global positioning system (GPS) tracking systems are also available.

Have your child wear an identification bracelet.

A medical identification (ID) bracelet can include your name and telephone number as well as medical information, like that a child has autism and is nonverbal. If your child will not wear a bracelet or necklace, think about using a temporary tattoo with your contact information.

Teach your child to swim.

The leading cause of death for autistic people who wander is drowning. It is critical to teach your child to swim and to understand the importance of water safety. Many community organizations such as YMCAs offer swimming lessons for children with special needs. The final lesson should be with clothes on. Teaching your child to swim does not mean your child is safe in water.

If you own a pool, put a fence around it. Remove all toys or items of interest from the pool when it’s not in use. If your neighbors have pools, tell them about your child’s tendency to wander and ask them to use similar safety measures to help keep your child safe.

Autism Speaks offers grants to organizations that offer swimming and water safety lessons to autistic people who may not be able to afford them. Learn more at autismspeaks.org/grants-service-providers.

Tell your neighbors.

Making sure your neighbors know your child can help reduce the risks associated with wandering. Introduce your child to your neighbors. Or show them a photo of your child. Create an information sheet about your child and share it with neighbors as well as family, friends and coworkers.

Alert first responders in your area.

Giving first responders information about your child before wandering happens may help improve their response. Share the information sheet about your child with local first responders. Always make sure to work with your child’s team to express any concerns about safety issues, so that you can work together on a safety plan best suited for your child. For more information, visit awaare.org.