The Autism Bookshelf: How Can I Help?

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Hillary Clinton’s famous remark that “it takes a village to raise a child” triggered what’s become an ongoing national dialogue of sorts: debating the importance of people, communities, and institutions beyond the traditional household in helping a child to grow. By now, most families would probably agree that the truth lies somewhere in the middle: no two parents can reasonably be 100-percent responsible for a child’s upbringing, and on the other end of the continuum, even the kibbutzim stopped making kids live apart from their parents.

But the debate is an especially poignant one for families touched by autism. I would suppose that if asked whether it’s about the family or something much larger, their answer might be that the truth lies not in the middle, but somehow both extremes at once. Raising a child on the spectrum can require two devoted parents, one of whom is singularly devoted to caring for the child. It can also require a far-ranging support system of friends, relatives, medical professionals, and educators. It takes a family, a village, and everything in between. The demands—and the stakes—are that high.

Ann Palmer’s book, A Friend’s and Relative’s Guide to Supporting the Family with Autism takes a bold first step in integrating layers of support around the family touched by autism, inviting grandparents, relatives, co-workers, neighbors, and close friends to play a pivotal role in a child’s growth, whether through direct involvement or through greater understanding for the parents’ journey.

The book begins with an introduction to the autism spectrum and a brief history of how we got to this point, from the early work of Drs. Kanner and Asperger to the debunking of icy mothers or measles shots as culprits. Sure, this is old hat for the experienced parent or caregiver, but this is not a book for the experienced parent or caregiver. Ms. Palmer does us all a great service by explaining to the unacquainted what autism isn’t: we are not Rain Man, we do have emotions and feelings, and yes, we can even be successful.

The book stresses the stress that raising a child with autism can put on a marriage. As Ms. Palmer explains, it’s not as simple as parents being busier. The sleep deprivation that attends child care on the spectrum can lead to hormonal imbalances, bringing about depression and irritability in people who are already overextending themselves. And that’s before we even make it out the door in the morning, if we do at all: a mother may have to quit her job to stay at home, while her husband takes on a part-time job to supplementBookShelf240 the household’s income. And with the costs associated with healthcare and support services, they’ll need every cent. If you aren’t living it already, you can see how hard it can get for two people who love each other to stay devoted to themselves while remaining devoted to a child who relies so extraordinarily on their love and hard work.

This is where the book shines, as it instructs and encourages relatives and friends to give what they can, whether it’s as simple as being a good listener for a venting mom, or as involved as providing respite care so that a child’s parents can be at their best for their family and themselves. As any good guide should, it matches what to do with what not to do. Not lost on Ms. Palmer is how conversations can be minefields with a spectrum family. We’ve all been told somewhere along the line to avoid matters of politics and religion. The latter is especially true here. The book specifically advises the reader to tread lightly on matters of faith. “God chose you to have a special child” may seem touching and encouraging until that mother, pushed to her wits’ end, questioning her faith as it is, sputters back that maybe he should have chosen someone else instead.

A Friend’s and Relative’s Guide to Supporting the Family with Autism takes a bold first step in integrating layers of support around the family touched by autism

From cover to cover, the book is full of heartfelt and useful advice. That being said, some of the advice may fall outside the book’s intended purview. On several occasions, the author speaks directly to issues facing “your child” or “your partner,” which wouldn’t apply to the friends and relatives in the title. Perhaps the intention is for parents to give the book a read before handing it off to a grandparent, neighbor, or another involved party. My only fear is that these passages for the parents themselves will fail to resonate with readers outside the household, and leave them liable to skimming.

And this is not a book to be skimmed. Ms. Palmer incorporates cited selections from relevant autism literature, as well as personal anecdotes from friends who, like her, have raised children on the spectrum. As a dedicated skimmer myself, I have a tendency to skip those block quotations set apart from the main narrative. Do not do that here! You would miss a wealth of terrific stories and insights.

A Friend’s and Relative’s Guide to Supporting the Family with Autism is subtitled “How Can I Help?” The first step, of course, would be the reading of this book and taking its lessons to heart. If you’re watching our channel, chances are that you have a maxed-out support system within the household, and a pretty solid circle of friends and relatives who are of invaluable assistance. Nevertheless, I’m sure you can think of people whom you’d like to inform or involve, or perhaps lend some guidance to a family member with good intentions. This is a book that can make your “village” of child development bigger and stronger. The question, then: is the book the gift, or is the gift the good feeling that will come with constructively volunteering one’s time and energy to people who need it so badly? Once again, it really is better to give.

 If you are so inclined, you may purchase a copy of the book here.

Daniel Heinlein is the host of I Am Autistic, the flagship show on The Autism Channel.