Autism and the Extended Family. Raun Melmed, M.D.
Along with extensive pediatric know-how and some 30 years of hands-on practice here in the states, Dr. Melmed offers advice grounded in his own upbringing in South Africa, a beautiful country, scarred by generations of apartheid “separateness.”
In the years when Cape Town was suffering under apartheid, Raun, the child must have grown to manhood secure in the protective warmth of an extended family. This carefully thought-out guide book conjures up the old phrase “kith and kin.” “Kith” is a forgotten word for friends and neighbors, coined when fathers and sons, cousins and in-laws lived and worked together in close relationships on farms, in stores, and at institutions of learning. Kith and kin must have been crucial to Melmed’s boyhood, not just for extended family comfort, but for safety as well.
In his own words:
“Growing up in South Africa made me acutely aware of the differences among people during a time when apartheid attempted to divide them from one another. I resolved to work toward celebrating those differences and focusing on those with developmental challenges.”
To this declaration, Dr. Melmed adds a colorful sidebar:
“It I weren’t a doctor, I would be an actor. The unfolding human drama parading through my office on a day-to-day basis is what nourishes me — being privy to the joys and tears of the families and their children. So if not in real life, I would choose the stage.”
Dr. Melmed’s words sent me searching for those of Athol Fugard, renowned actor/playwright who also grew up in Cape Town.
“In the theatre, of course,” writes Fugard, “my fascination lies with the ‘living moment’ — the actual, the real, the immediate, there before my eyes, even it if shares in the transient fate of all living moments. I suppose the theatre uses more of the actual substance of life than any other art ... flesh and blood, sweat, the human voice, real pain, real times.”
Despite two lives based on different professions, both men know firsthand what it’s like to suffer one another man’s contempt, if not savage hate.
They also share a deeply felt drive to remedy and refocus the damage that acts of deliberate isolation — whether oppression in South Africa, bullying in an American school yard, or subtle shunning by neighbors — do to both victim and perpetrator.
In Autism and the Extended Family, Dr. Melmed and Maria Wheeler lay out guiding steps for a family’s possible transformation. “When we can do that and accept that loved one who is ours, we will be healed.”
The word “heal” means “whole.” No longer fragmented.
No longer dancing in lonely isolation.
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