DON'T MOURN FOR US

By: Jim Sinclair

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.] Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person. Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means. I invite you to look at our autism, and look at your grief, from our perspective: Autism is not an appendage Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with. This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, I wish my child did not have autism, what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead. Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces. Autism is not an impenetrable wall You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true. Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system. That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant. It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world. And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined. Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate. Autism is not death Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to. But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives-- but it has nothing to do with autism. What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive. This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died. You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you. This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world? Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go. After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it." If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you. Jim Sinclair.

Functional Behavioral Assessments: What, Why, When, Where, and Who?

by:Stephen Starin, Ph.D.

The recent amendments to IDEA are final. School districts are now required to conduct functional behavioral analyses of problem behaviors, under certain circumstances.

Unfortunately, IDEA does not provide specific guidelines regarding the conduct of a functional behavioral assessment. Each school district is left to its own devices when interpreting the guidelines and may opt for lower quality standards.

Below are my comments on conducting a functional behavioral assessment (FBA). These comments are based upon my formal training as a behavior analyst and over 20 years experience working with children, adolescents, and adults with serious problem behaviors. I've tried to avoid technical jargon for ease of discussion.

What is a "Functional Behavioral Assessment"?

The term "Functional Behavioral Assessment" comes from what is called a "Functional Assessment" or "Functional Analysis" in the field of applied behavior analysis. This is the process of determining the cause (or "function") of behavior before developing an intervention. The intervention must be based on the hypothesized cause (function) of behavior.

Why Do Functional Behavioral Assessments?

Failure to base the intervention on the specific cause (function) very often results in ineffective and unnecessarily restrictive procedures.

For example, consider the case of a young child who has learned that screaming is an effective way of avoiding or escaping unpleasant tasks. Using timeout in this situation would provide the child with exactly what he wants (avoiding the task) and is likely to make the problem worse, not better. Without an adequate functional behavioral assessment, we would not know the true function of the young child's screaming and therefore may select an inappropriate intervention.

How Do You Determine the Cause or Function of Behavior?

There are three ways of getting at the function (cause) of the behavior:

(a) interviews and rating scales,
(b) direct and systematic observation of the person's behavior, and
(c) manipulating different environmental events to see how behavior changes.

The first two are generally referred to as functional assessments whereas the third is generally referred to as a functional analysis.

Several different interviews and rating scales have been developed to try to get at the function (cause) of behavior. However, reliability is usually poor and these should be used only as a starting point
for systematic and direct observation of the person's behavior. Relying exclusively on interviews and rating scales should neverbe considered a functional assessment. Besides having poor reliability, it would never hold up in court with an expert witness.

A more reliable method involves directly observing the person's behavior in his or her natural environment and analyzing the behavior's antecedents (environmental events that immediately precede the problem behavior) and consequences (environmental events that immediately follow the problem behavior).

Types of Problem Behavior

Problem behavior typically falls into one or more of three general categories:

(a) behavior that produces attention and other desired events (e.g., access to toys, desired activities),
(b) behavior that allows the person to avoid or escape demands or other undesired events/activities, and
(c) behavior that occurs because of its sensory consequences (relieves pain, feels good, etc.).

The antecedents and consequences are analyzed to see which function(s) the behavior fulfills. Problem behavior can also serve more than one function, further complicating the matter. The interview, combined with direct observation of the behavior is what most people use in determining the function of the behavior. This is fine when the data collected on the antecedents and consequences is clear. Most of the time this is sufficient in determining the behavior's function(s).

Systematic Manipulation of Environment

In some cases, however, direct observation does not give a clear picture of the behavior's functions and systematically manipulating various environmental events becomes necessary. The most common way of systematically manipulating the environment is to put the person in several different situations and carefully observe how the behavior changes.

For example, to determine the function of screaming, we could arrange for attention to be given to the child each time she screams and measure how frequently screaming occurs. We could also make demands on the child, terminating them each time she screams and measure how frequently it occurs. In addition, we could leave the child alone and measure how often screaming occurs. If screaming is more frequent when attention is given, we hypothesize that it occurs to get attention. If screaming is more frequent when demands are made, we can assume that screaming has served to let the person escape or avoid demands. Finally, if screaming is more frequent when left alone, we can assume that it is occurring because of its sensory consequences. This third method should be reserved only for situations in which the functions of behavior are not clear through systematic and direct observation.

What About Qualifications and Training?

An important question is "Who should be involved in the functional behavioral assessment?" The interview is important in gathering preliminary information that will guide later direct observation. As such, it is important to talk to the people who know the child the best: parents, teachers and significant others.

Direct observation should be carried out only by a person who has been thoroughly trained on collecting and analyzing this type of information. Directly manipulating environment events should be conducted only by a well-trained behavior analyst or someone else with a high degree of training and experience conducting these manipulations for they can pose danger to the person if not done correctly.

As can be seen, a functional behavioral assessment is more than a group of people sitting around a table trying to determine the cause. Although it is important to gather information from significant people in the person's life, it is not enough.

Someone knowledgeable about behavior must be in the classroom and/or family home directly observing and measuring the behavior. Although this takes time, it is usually time well spent because the intervention is more likely to be effective than one developed without careful consideration of the behavior's function(s).

Don't Waste Valuable Time!

Time is precious. Time should not be wasted on interventions (behavioral or otherwise) when there is no evidence that this particular intervention is likely to work, for this particular child, in this particular situation.

 

About the Author


Dr. Stephen Starin is the Executive Director and Senior Behavior Analyst for Behavior Analysis and Therapy, Inc. He is the former Director of Behavior Analysis for the State of Florida and is a Past President of the Florida Association for Behavior Analysis.

You can contact Behavior Analysis and Therapy, Inc. at (888) 423-4284 or on the Internet at http://www.behavior-analysis.org/

We need Crafters and Artists for Ribfest!!

crafters

WELCOME TO HOLLAND

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Match Day

Dear Supporter of Community Advocates for Persons with Developmental Disabilities:

The Kalamazoo Community Foundation is celebrating its 85th birthday this year and has given Kalamazoo's nonprofit community—and generous donors like you—85,000 reasons to celebrate with them on Match Day!

Match Day is a very special event designed to help nonprofit organizations like Community Advocates for Persons with Developmental Disabilities build the endowment fund established for our benefit at the Community Foundation. On Match Day, which will take place on June 23 in Bronson Park, the Community Foundation will match each dollar donated to the Community Advocates for Persons with Developmental Disabilities Fund with 50 cents that will be available for us to use immediately. There is $85,000 in match dollars available!

On Match Day, you are invited to come to the park anytime between 11 a.m. and 6 p.m. and make a donation to the "Community Advocates for Persons with Developmental Disabilities Fund." Donations must be made in person and can be made by cash, check or credit card (Visa, MasterCard, Discover or American Express).

You can come to the park and donate anytime throughout the day, but we encourage you to come early, because while donations will be accepted all day, they will only be matched until the $85,000 is exhausted. For complete Match Day details, including information about maximum donations, how your gift will be receipted, and Michigan Community Foundation Tax Credit eligibility, please visit the Kalamazoo Community Foundation's Web site at www.kalfound.org

Thank you for considering a gift to Community Advocates that will benefit the people we serve for years to come.

Sincerely,

Carl Phalin, Chairperson

Deb Russell, CEO/President

And members of the Board of Community Advocates:

Brian Bruce, Chairperson Elect Dawn Pantaleo, Immediate Past Chairperson Michael Payne, Treasurer

Steve Barber, Secretary

Susan Brooks , Diana DeVries , Fran Hoard , Ian Kennedy & Mary Connors

Guardianship and its Alternatives Presentation

As an advocacy organization for persons with developmental disabilities, we at Community Advocates would like to share information with you on this subject. It is truly our desire to provide you with as much information as possible so that your family can make an informed decision about this very personal and emotional subject. We would like to invite you to an informal presentation and discussion.

Please allow us the pleasure of your presence on Tuesday, June 22nd at 6:00 pm to 7:30 pm at our office. We will present information from full guardianship to possible alternative options for persons with Developmental Disabilities. There will also be an opportunity to network with other families who are experiencing this same cross road. Refreshments will be served.

Please RSVP to Lori West. 1-269-342-9801 at extension 203 or e-mail: lwest@communityadvocates.org

Looking forward to seeing you.

Community Advocates on Monday Night Live

Community Advocates was incorporated as a nonprofit corporation in 1953 as an affiliate of both the state and national units of what was then known as the Association for Retarded Children. Those organizations are now known simply as The Arc. Our affiliation remains close and continues its purpose to seek the best possible services and support for children and adults with disabilities.

Initially, our constituency was individuals with intellectual disabilities and their families. Over time, we have broadened our outreach to include people with a variety of developmental disabilities. Our geographical scope is Kalamazoo County, but although we have provided advocacy assistance to people from surrounding counties on a case-by-case basis.

In the early years our organization was a direct provider of services, organized and run by volunteers, primarily parents. In the 1960's we began to create other programs, and during the 1980's and 1990's we created programs run by other agencies and incorporated new organizations as needed.

During the 1970's we spearheaded a planning process that prepared this county to provide the services needed to further the task of deinstitutionalization. That network of services remains largely intact today.

Our mission remains:
We exist as an advocacy organization to make it possible for each person with a disability to participate fully in all aspects of community and to support the effort of each individual to determine his/her own future.

And here is our Deb Russell (CEO) and Carl Phalin (Board Chair) with Keith Roe the host of Monday Night Live. This was televised on June,7 2010.