ask. “It never works out. The kid comes over and mine just sits in the corner and does not share or participate in any way.”
Sometimes parents may decide, consciously or unconsciously, to avoid events because of their child’s behavior or because they feel unwelcome. This can result in isolation, which is clearly not in anyone’s best interest.
Those are precisely the types of situations in which we need to encourage and support opportunities for social interactions when extra play dates need to be set up, rather than avoiding play dates. Of course, these play dates may not be like typical play dates, and may need to be structured using appropriate interventions. Of course, that takes expertise and work, but it’s what is needed and it will help your child learn how to have a successful play date.
Positive outcomes for children with autism and their families can be achieved if extended family members learn, understand, and participate more in the child’s life; such interaction will enable the family circle to experience the joy of successfully participating in the growth and learning of a beautiful child. Everyone benefits.
Working together as an extended family for the benefit of a child with autism takes effort. It will likely present a challenge for each family member to look beyond themselves, past any previous opinions or roles adopted prior to working together to support the child with autism. All extended family members must be aware of their own strengths and weaknesses, along with any past events that may present challenges to working together for a common cause. Such challenges are typical and should be expected and resolved supportively. This will be a journey like no other. Most people in a family want to help, get along, and be together. It’s time to begin taking the first steps toward setting aside our differences 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
