Читать книгу Autism and the Extended Family - Raun Melmed M.D. - Страница 7
ОглавлениеWelcome 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.
CASE EXAMPLE
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.
CAUTION
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.
CAUTION
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.
CASE EXAMPLE
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:
does not attend social functions;
naps during the day;
cancels plans at the last minute;
cannot find a babysitter;
is in deep debt, has no extra money, or cannot afford the basics;
frequently goes to, or talks about medical or therapy appointments;
does not attend family or work-related gatherings;
“won’t discipline” his/her child.
Learn more about autism so you can understand why a parent might display some or all of these behaviors. You may be surprised to learn that your loved one wants to socialize with you, but cannot find a babysitter who is trained to care for her child safely. Your employee may be late sometimes because his child has overwhelming panic attacks if he sees a dark cloud while walking to the car. Your co-worker may want to attend social gatherings after work, but must go home so his spouse can sleep before she has to stay up all night with a child who does not sleep. Your cousin may not attend the family reunion because his child cannot tolerate large groups of people and he doesn’t want to disrupt the event for others. Your daughter may not appear to be disciplining her child because she understands that her child’s behavior is due to being overwhelmed by over-stimulation, so the best strategy is to calmly help her child access a less stimulating environment.
Together we can learn how autism affects our loved ones and how we can better support one another. An important step in providing such support is learning how to effectively understand, prevent, and respond to the behaviors of our family members who have autism so they can function more successfully in the extended family network. It is also important to recognize that support can be provided directly or indirectly. Some family members may not be comfortable providing direct support in the form of interacting with the person who has autism, but may still want to help. They can still provide great support by indirectly helping.
CASE EXAMPLE
An uncle steps up!
Terrell did not have much patience with his nephew, Ben, who had autism. Ben did not talk and seemed to avoid him. Ben preferred to be outdoors most of the time. Terrell was very good at repairing and building. He noticed a section of the fence outside Ben’s house was leaning and offered to repair it. Ben’s parents had been worried that the fence would fall down and Ben might run off, but they were so overwhelmed just getting through each day, that they had not fixed the fence. They greatly appreciated Terrell’s help. Terrell was happy to find a way to help them. He realized how challenging each day was for Ben’s parents. When he came to visit he would look for any repairs that were needed and would take care of them.
CASE EXAMPLES
A sister’s support
Jaz wanted to help her sister with her son, Beau, who had autism, but was afraid of Beau’s violent outbursts. Her sister was a single mom and could not even cook dinner without numerous interruptions from Beau’s outbursts and demands. Jaz offered to cook dinner for her sister and Beau three evenings a week. She always made enough so there were leftovers for her sister to reheat the other weekday evenings. Jaz also became more familiar with Beau’s behavior patterns when she was at the house cooking. She learned how to predict and prevent many of his outbursts, which helped her feel more comfortable with him. Over time they established a closer relationship. Jaz’s sister greatly appreciated the support.
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A granny pitches in
Eva’s mother knew date nights had been important to Eva and her husband before they had their daughter, Luna. She was no longer comfortable babysitting for Luna, who had autism, but Eva’s parents could not afford a babysitter. Eva’s mother hired a babysitter one night each month so they could continue having date nights.
