Talk With Me
Experiences With Autism in the LDS Community
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You may be wondering why there is a book about autism in the Mormon (or Latter-day Saint) community. I doubt any credible scientist would hypothesize that the rate of autism is affected by family belief system. So we may assume that, among Mormons just as in the general population, autism or some other developmental delay on the autism spectrum affects 1 person out of 160,1 with the rate of incidence on the rise.2 But it is not the rate of incidence that warrants a book on autism among Mormons. Rather, the Mormon experience does make any significant life experience different. Most of the experiences in this book could happen to anyone dealing with an autistic child. But here and there you will see the authors describe either anguish or peace because of circumstances and beliefs that are not common to other cultures. In this chapter, I’d like to give you a brief introduction to some of those circumstances (Mormon church organization and culture) and beliefs (Mormon theology). How the organization and culture of the Church of Jesus Christ of Latter-day Saints (i.e., the Mormon church) affects the experience of having an autistic family member There are three major ways in which Mormon organization and culture differ from other faith traditions: how congregations are formed, how leaders are selected and trained, and how members of the congregation interact. This doesn’t account for every unique Mormon trait. For example, I’m not sure what these three factors have to do with the preeminence of green Jell-O in Mormon desserts. But I think the reader will find these factors account for much of the confusion a non-Mormon might experience reading this book. Formation of Mormon congregations. Unlike most othe What does any of this have to do with autism? Well, it means that a Mormon who wishes to change congregations can’t legitimately start attending a different congregation, other than by doing something as drastic as moving. And the church guidelines maintain congregations at approximately 200-300 families, or 500-800 individuals. Based on this size, it is likely that any given Mormon congregation will include an autistic individual, but at most only a few autistic individuals. This can result in an opportunity for an entire congregation to know the autistic individuals in their midst and care for their particular needs. But it also means that most everyone in that congregation is dealing with those autistic individuals from a relatively uninformed standpoint, putting a burden for education on the family of the autistic individual. Lay Leadership. A unique aspect of Mormonism is the absence of a paid clergy. I could write volumes about the general pros (and cons) of lay leadership versus paid clergy. The great thing is that the ability to fill any position in the congregation is only limited by the membership of the congregation. The bad thing is that the ability to fill any position in the congregation is limited to the membership of the congregation! With respect to autism, this ability to call on the entire talent pool of a congregation can be an excellent thing. In my own case, this has resulted in my daughter’s being helped at church by people whose work a-day job is special education. However, some have found that leaders in their congregations are uninformed or overloaded by families and jobs in addition to their church responsibilities. Another aspect of the lay ministry in the Mormon Church is the great flexibility this can provide. There are no ‘career paths’ in the church, so the right person can be called upon to help where the
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About the Book
When a group of caring parents got together and start talking about their experiences with autism, so much information was shared that those with newly diagnosed family members who had myriad questions wanted to be in on the conversations! Eleven authors who have children at various ages and stages with autism, and one adult with autism, have collaborated to give everyone a better understanding about the needs of families and people who are dealing with this disability. We began as friends sharing information on the LDS_Autism List serve through Yahoo! Groups on the Internet, and decided to collect our stories and ideas for the many others who are living with autism in whatever form. We are sure that this collection will be valuable to more than just members of the Church of Jesus Christ of Latter-day Saints, but to all families, friends, and teachers of people with autism. The ideas we have are certainly often a product of our beliefs, but anyone who knows anyone with autism can benefit from what we have written. We have high hopes that what we have written can give ideas, hope, and coping skills to everyone whose lives are touched by autism. So, from all of us, here is our effort to share our combined wisdom from living with autism so those who help us and touch our lives can understand.
About the Author
When it comes to autism, some of the best experts are the people who live with it, either parents of kids on the spectrum, or those who are autistic. As members of the Church of Jesus Christ of Latter-day Saints, or “Mormons,” we have a somewhat unique perspective which affects how we feel about autism in our lives. This book has come about through the efforts of twelve families, whose lives are touched by autism, including one chapter written by an adult who has autism himself. We have each heard time and again that this resource is badly needed, for members of the church (or of any church) and for those who work with children with autism, those who have family, friends or neighbors with autism, or anyone who wants to better understand the developmental disability. Given the current instance of autism in our society, this book may be pretty much for everyone! Our children are ranging in ages and severity of autism, so there is good information for everyone here. We have included ideas for church leaders and families as part of our own stories, since we feel that our stories provide a much-needed resource for those who are searching for ideas.