Living with Autistic Spectrum Disorder (ASD)

• Living with autistic spectrum disorder (ASD)
• Family issues
• Healthy living
• Safety
• Transitions
• Independent living

For many people with an autistic spectrum disorder (ASD) and their families, daily life is not easy. However, finding resources and planning for the future can help families improve their quality of life.

Living with a person with an ASD affects the entire family -- parents, siblings, and in some families, grandparents, aunts, uncles, and cousins. Meeting the complex needs of a person with an ASD can put families under a great deal of stress -- emotional, financial, and sometimes even physical. Respite care can give parents and other family caregivers a needed break and help maintain family well-being.

To stay healthy, people with disabilities need the same basic health care as everyone else. They need to eat well, exercise, get enough rest, drink plenty of water, and have complete access to health care, including regular physical and dental checkups. It is important to find health care providers who are comfortable with persons who have an ASD.

Sometimes when people with disabilities have a behavioral change or behavioral issue, it may be because they have a medical problem they cannot describe. For instance, head banging could be related to a disability, or it could be due to a headache or toothache. For this reason, it is important to find out if there is a physical problem before making changes in a person's treatment or therapy.

Safety is important for everyone. We all need to be safe in order to live full and productive lives. People with disabilities can be at higher risk for injuries and abuse. It is important for parents and other family members to teach their loved one how to stay safe and what to do if they feel threatened or have been hurt in any way. It can sometimes be helpful to give a person with a disability a bracelet or other item that has his or her name, address, phone number, and disability on it in case he or she gets lost.

For some people with disabilities and their parents, change can be difficult. Planning ahead of time may make transitions easier for everyone.

The transition from high school to adulthood can be especially challenging. There are many important, life-changing decisions to make, such as whether to go to college or a vocational school or whether to enter the workforce, and if so, how and where. It is important to begin thinking about this transition in childhood, so that educational transition plans are put in place -- preferably by age 14, but no later than age 16 -- to make sure the individual has the skills he or she needs to begin the next phase of life. The transition of health care from a pediatrician to a doctor who treats adults is another area that needs a plan.

Independent living means that a person lives in his or her own apartment or house and needs limited help from outside agencies. The person might need help with only complex issues such as managing money, rather than day-to-day living skills. Whether an adult with ASD continues to live at home or moves out into the community depends in large part on his or her ability to manage everyday tasks with little or no help. For example, can the person clean the house, cook, shop, and pay bills? Is he or she able to use public transportation? Many families prefer to start with some supported living arrangements and move towards increased independence.