The Autism Society Event and Education Recordings Archive

None of us can handle everything alone! This session will emphasize the importance of gaining comfort with developing a sense of community in our lives, in a variety of ways. It will cover the importance of interdependence, how to ask for help, fostering support from family or “chosen” family, and whether to consider hiring paid providers. All discussion will be based in the assumption that when we allow others to enter the circle of our family, everybody wins! “No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were; any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.” John Donne, 1624

As early as the fifteenth century, poet John Donne understood the ways in which humans are by necessity, interconnected. Modern day culture unfortunately emphasizes “independence” as a virtue and “dependence” as a weakness. In reality, (a la Donne) no human being can get by on a totally independent basis. We are, in fact, interdependent for our survival.

Definition of interdependence

Imagine our world as an intricate spider web. To move one connecting fiber in the web alters the fabric of the entire structure. Additionally, if one link is weakened, it compromises the integrity of the whole. There are numerous examples of how this plays out in our civilized world. When we drive a car, we count on other drivers to stay with the flow of traffic and to follow the driving laws to save lives. When a child is ill, we are expected to keep that child home until he is well, and to protect the health of other children and adults. Interdependence, defined at its most basic level, means that one person's action has a direct effect on the well-being of many people.

Parents are under tremendous emotional and physical stress following a diagnosis; they may experience isolation and find it difficult to not only ask for help, but to also accept it. When a family is faced with the challenge of raising a child with ASD, they too are intimately interconnected in that web. In fact, it is a rite of passage for parents when coming to terms with a child's diagnosis, to discover the vast network of support that can be tapped into. First, one must recognize the interdependent “web” to which we are all connected. Then one must identify specific sources of support and reach out to others. . Four steps involved in asking for help

1)Believing you have a right to ask

Lack of entitlement is one of the major barriers that interfere with reaching out for help in times of need. People are burdened with a limiting belief that “Others have it so much worse than I! What right do I have to bother people with my problems?” I often joke with people who say that to me, by responding, “Well that must mean there is only one person on the planet that deserves to ask for help!” In truth, comparing the extent of one's own problems to others is beside the point. If one subscribes to the belief that humans are, by nature, interdependent, then the stigma of reaching out for assistance disappears into thin air. Feeling entitled to ask is actually the first step involved in developing the skills necessary to ask for help.

2)Believing that help is available

Once a person accepts that he/she has a right to ask for help, the next step is to entertain the belief that if you ask, receiving help is possible. We all know about the power of positive thinking. I advise that a person should imagine him or herself asking ahead of time and envisioning the interaction going well. This also gives one an opportunity to practice doing something that might feel a little anxiety provoking, thus becoming a little more comfortable with the idea.

3)Make a list of what would be helpful

It is important to grasp the fact that the act of helping and receiving is a mutual process. When you ask someone for help, you provide them with the opportunity to participate in your life in a meaningful way. Remember, not only do people need to receive help at times. They also need the opportunity to give to others, and to feel needed. Maintaining awareness of the mutuality of giving and receiving makes it easier to feel more comfortable in reaching out for help.

Also, most often people want to reach out, but don't know what kind of help to offer. I therefore recommend that parents take the time to proactively identify specific things that would be beneficial. In this way, when people say, “Let me know if there is something I can do to help,” there is a ready-made list of specific actions. For example, “Well, making dinner on Thursdays is a real problem for me. Johnny has speech therapy and Susie has gymnastics. It's almost impossible to get dinner on the table. If you could bring over a frozen meal, it would help so much.”

4)Ask for the help

A definite distinction exists between making a request and a demand. A request means that the person asking for help can accept any answer whether “yes”, “no,” or “maybe.” When making a demand, the person asking cannot tolerate anything but an affirmative answer. I believe that when someone cannot accept a “no”, that person has waited far too long to ask for help. Usually, people make demands when feeling desperate and vulnerable. The point is to not wait so long to reach out from a place of desperation.

The reader can begin to understand that if one has a sense of entitlement about asking, a belief that help is available, and an idea of what kind of help is needed, then the asking for help flows much more naturally.

Where to seek help

During the session, we will discuss different sources of support: extended family; “chosen” family; natural supports; the autism world; religious and/or spiritual support; professionals; and paid one-to-one support. All of these arenas will be discussed, based in the belief that when we allow others to enter the circle of our family, everybody wins!

Extended family and friends

The support of extended family members and friends can be crucial to parents as they adjust to their child's diagnosis of autism. We will explore some roadblocks that interfere with strengthening those connections. We will also provide suggestions for cultivating better relationships with family members and friends who demonstrate a desire to help.

Friends and family may experience a sense of helplessness and frustration when they desperately want to help but don't know how. This session will recommend strategies that parents can use to educate extended family members and friends about their needs and ways they can support them during this difficult time.

Identifying other areas of support

Participants will also have the opportunity to identify other areas of their life where support is available. Often when examining sources of support, parents will discover that the number of support resources utilized, are limited. They will be encouraged to think creatively about how to broaden their support base so as not to “have all their eggs in one basket,” a situation that ultimately contributes to feelings of isolation and vulnerability.

Summary

We are all in this together, as a community. Karyn Kedar in “God Whispers” (©1993) describes the desire for community as “the search for shared responsibility.” She goes on to say, “the word, responsibility bids you to respond according to your ability: if you can, respond when I am sick, respond when I give birth, respond when I bury my father. When we have shared moments of celebration and sorrow, we respond by showing up…I believe that to be fully actualized as an individual, you must belong to a larger community, a community that requires that you break down walls of isolation, a community that will respond to you--and that will ask you to respond in kind.” (pp.104-105).

In our intricate web of interdependence, the flow of giving and receiving makes our connections to each other that much stronger. In that way, we come together supporting each other “for a brighter tomorrow.”

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