Читать книгу Autism and the Extended Family - Raun Melmed M.D. - Страница 6

CHAPTER

1

Introduction

Does someone you love have autism? With the dramatic increase in the number of individuals diagnosed with autism, you very likely do. When a child is diagnosed with autism the entire family is impacted, along with extended family members and friends.

Sometimes we may feel helpless or frustrated in these situations, especially when we are very close to the child and his or her parents. Few conditions are as puzzling and mysterious as autism, which can make us feel unsure and even powerless. We might not know what to say, what to do, or how to help. Extended family members have a very important role to play, and the goal of this book is to help understand how valuable all family members are and to provide practical suggestions on how to help.

So what is an extended family?

For the purpose of this book, we consider “extended family” to include anyone who is connected to the child or adult impacted by autism, either as a relative, partner, or close friend.

Who would you consider to be a member of your own extended family? Of course there is the nuclear family. Those are the people that live together in one house. Traditionally, we have thought of them as parents and children. Increasingly, however, step-parents, half-siblings, step-siblings, and other adults have become involved. A better term might be the “blended family.” There might be adoptive children living in the family or even foster children living under the same roof. A parent might be married, single, gay, or even LAT!—living apart together.

By extended family, we usually refer to families who may be, but are usually not, living together. These families include grandparents, aunts, uncles, cousins, nephews, and nieces. And, of course, there are the in-laws, parents-in-law, and brothers and sisters-in-law. Today the term is commonly used for family members whether or not they live together within the same household.

Extended families may often live under the same roof. This set-up can include multiple generations in the family. A common scenario is one in which a grandparent, adult children, and often grandchildren all live together for financial or care-giving reasons. Nationwide, more than 2.5 million grandparents have taken on the primary responsibility of raising grandchildren in what AARP calls “grandfamilies”. Oftentimes, a grandchild has autism.

In today’s world, families are often scattered across the country. Grandparents, aunts, and uncles might live far away. That is just one of the reasons we form close bonds with friends who may be filling the roles of blood relatives. These friends are an enormous source of love and support to all of us, especially for families affected by autism. They rightly fill the role of family and are included and welcomed into the extended family!

There are clear advantages to having a large extended family. Security and sharing resources during a crisis seem the most obvious of these. Members of the extended family can also be role models to help perpetuate desired behavior and cultural values. They form a supportive network that adds to the fun at family gatherings, birthday celebrations, and so on.

Understandably, it is harder to attend social events and participate in them when a child has autism. This gives us even more reason to provide the most effective support system for our child and his or her family. Sometimes parents tell us they have given up hope for successful play dates for their children with autism. “What’s the point?” they 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.