Autism and the Extended Family. Raun Melmed, M.D.
and working together to help our loved one with autism grow, learn, and thrive. Be brave and work through any conflicts, even in the face of drama or hostility that may arise when family members feel so passionately about what the child needs. The first priority is always the child and his or her immediate family.
Are you a good extended family member?
Most extended families are wonderfully accepting of children with autism and their parents. The family and child can only benefit from your support as an extended family member! When the extended family is supportive and helpful, the child and its immediate family are encouraged to be involved in activities as much as is practical and tolerable. Extended families can provide a wonderful support system for the immediate family of a child with autism.
Do some extended family members have difficulty accepting a child’s diagnosis of autism, the symptoms, and/or the treatment program? Do they understand and honor what the child can tolerate or do they try to impose their own will and structure on the child or on the parent? It is by example and through education that extended family members can learn to positively impact a child with autism, beyond what comes naturally. Education is a powerful coping tool. Learning as much as you can about autism is critical to being an effective source of change, growth, and support.
We all need extended families; loved ones who can act as extra cheerleaders and a built-in support group. That is the reason for this book. They say it takes a village to raise a child. At the very least, a child with autism needs a team, and every member of the extended family team is impacted by autism. Autism is definitely a family affair.
Please refer to Activity A in the Activity section to understand who may be part of your extended family.
Welcome to the World of Autism!
The world of autism is often confusing and overwhelming for everyone! Parents, the person who has autism, siblings, and extended family members all have many unanswered questions.
Autistic Spectrum Disorder (ASD) is a neurodevelopmental disorder that continues throughout a person’s life. It used to be called Pervasive Developmental Disorder and included Autistic Disorder, Asperger’s Disorder (also known as Asperger’s syndrome) and PDD-NOS, but it is now called ASD. We use the term “autism” or ASD in this book.
Your loved one was diagnosed with an autism spectrum disorder because he demonstrates significant difficulties:
Communicating effectively using words, facial expressions, body language, tone of voice, and eye gaze as part of a cooperative, reciprocal exchange with other people;
Understanding and responding to what other people are trying to communicate through words, facial expressions, tone of voice, body language, and eye gaze;
Understanding and using social skills, including playing and interacting with others, using cooperative give-and-take gestures, and expressing feelings in an acceptable manner; and
Repetitive, rigid, and/or restrictive patterns of behavior, reasoning, or thinking.
Lisa is 12 years old. She was recently diagnosed with Asperger’s syndrome, which is a type of ASD. Lisa is very smart. She can talk for hours about her favorite topic, but walks away if someone asks her a question about something that does not interest her. Lisa also yells and throws tantrums. Many people think she is rude and “spoiled.” They do not realize her behavior is directly related to having autism. Lisa has started Applied Behavioral Analysis (ABA) therapy and is learning what to do and say when other people ask her a question, no matter what the topic is. She is also learning acceptable ways to talk and act when she is frustrated or upset.
When we say autism is a neurodevelopmental condition, it means autism is an illness of the nervous system caused by genetic, metabolic, or other biological factors. Parents do not cause autism. Autism develops independently of what parents and caretakers do as a child is growing and learning. Everyone who has autism is an individual person. No two people with autism are the same. Although every person with autism has difficulties with communication, social functioning, and rigid, repetitive or restrictive patterns of thinking or behaving, each individual is affected by these difficulties in unique ways.
The most effective treatments for autism are based on behavioral principles, sometimes called Applied Behavioral Analysis (ABA), and include Pivotal Response Training (PRT). Other treatments include Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), Floor time, and Picture Exchange Communication System (PECS). Educational opportunities within the public school system are available to all children and include potential access to speech therapy and occupational therapy (OT). Medical treatments can be used to address behavioral, sleep-related, and other physical challenges. There is no known cure for autism, but with treatment, any individual’s outcome can be optimized.
Avoid assuming your loved one’s immediate family is the only one affected by autism. Autism in your family will affect everyone whose lives are connected to your family. Help one another learn about autism and how everyone can work together to support your loved one’s growth, learning, well-being, and happiness—each in their own way.
At the same time, it is important to recognize that many people’s lives may be impacted by the special needs of a loved one who has autism. The effects of autism are far reaching and often affect your loved one’s relationships with other people who do not live in the family home. This includes relatives, step-family, family friends, partners and children of relatives and family friends, and relatives and friends living in other towns, states, or countries.
Avoid blaming parents or assuming that poor discipline is the reason a child with autism has “meltdowns” or acts in ways that seem rude or selfish. Many children with autism need to be directly and repeatedly taught what to do and say in social situations. Learning simple social skills that other people readily learn may take months or years for a person with autism to learn. Your loved ones need caring support and understanding when learning how to cope with these issues.
Manny does not talk. In the past, he grabbed food and drinks from other people, climbed up on counters and took food out of the cupboards. He opened the refrigerator and took food. Manny had tantrums when he could not find what he was searching for. His mother tried to help, but she sometimes could not guess what he wanted and Manny would scream, cry, and hit her. Manny went to therapy and learned how to give people a picture to ask for what he wanted. He is starting to say a few words and has had very few meltdowns since learning a better way to communicate.
The effects of autism are relentless; they occur day after day, week after week, month after month, and year after year. The strain is often overwhelming and affects physical, emotional, and financial wellbeing. Understanding these far-reaching influences can help you support your loved ones whose lives have been touched by autism.
It is also important to recognize how other people’s lives are affected by autism, even if their lives are not impacted on a daily basis.
Friends, relatives, and co-workers may have difficulty understanding why the parent of a child who has autism: