The following guest column was written for First Signs by Mitzi Waltz, ©2001. Mitzi is the author of several Patient Centered Guides that provide comprehensive coverage on a variety of developmental and behavioral disorders, including Autism Spectrum Disorders: Understanding the Diagnosis and Getting Help.

I still hear from parents whose first introduction to autism information after their child's diagnosis was Bruno Bettelheim’s The Empty Fortress. Published in 1967, it has had an amazingly long life on library shelves, still frightening and shaming families of autistic children decades after the material in it was discredited.

If your family is coping with a child’s disability, there are books that can be helpful, and books that can hurt. The best can help you make good decisions about your child’s medical care and schooling, and offer you new ideas about parenting techniques that can make living with your child easier.

Bookshelf basics.

There are a few books that every parent of a child with a developmental delay should have on hand. They include:

A childhood reference book that discusses typical development and answers universal questions, such as the venerable Dr. Spock’s Baby and Child Care (Pocket Books) or Penelope Leach’s Your Baby and Child (Knopf)

A medical dictionary, such as The Signet Mosby Medical Encyclopedia or Webster’s New World Medical Dictionary

If your child takes medication, a basic drug reference book, such as The Pill Book (Bantam) or Straight Talk About Psychiatric Medications for Kids (Guilford Press)

A general book about early intervention and special education, such as Negotiating the Special Education Maze: A Guide for Parents and Teachers (Woodbine House)

Many of these come in inexpensive paperback editions, or can be found at used book stores.

Disability-specific information.

Beyond that, there are many books and online resources about autism and related disabilities. When choosing between them, let what you know about your child as a unique person be your guide. No author or expert understands your child as well as you do.

Autism is a spectrum disorder, and children on that spectrum can be very different from each other. No program of therapy, education, or medical care is right for every child. Sadly, even a few current books by authors who should know better offer no or very little hope. Any book, program, or Web site that takes this view is out of date. The tyranny of low expectations used to put children with autism on a road that led directly to a lifetime of residential care. Little was known about the condition, there were no medical options, and it was believed to be incurable. If you encounter this view today, just walk away.

Some sources encourage parents to set their expectations low for any child who has mental retardation, with or without autism. Experienced clinicians know it’s true that children with low IQs can be harder to work with, but they also know this may have more to do with the limitations of current treatments than the child’s “built-in” limits. It is also very difficult to obtain an accurate IQ score for a child who has problems with speech, attention, or the kinds of physical tasks included in intelligence tests for young children. There may not be a normal child inside struggling to get out, as some writers would have it, but that doesn¹t mean the child should not have access to medical care, therapies, or teaching methods that might help. Indeed, these children need more help, not less.

Conversely, if a book, program, or Web site promises a cure for your child’s condition, be wary. You can expect improvement from appropriate early intervention, and sometimes it is dramatic improvement, but no one has found a cure for autism or developmental delay yet. In at least some cases, intervention strategies may help your child to eventually be indistinguishable from “normal” children his or her age. He or she may still have some challenges (hyperactivity, obsessive-compulsive traits, speech difficulties, that sort of thing) but with luck and hard work, they may not keep your child from completing school and pursuing his or her interests as an adult. In the absence of a cure, this is the goal to aim for.

Pseudoscience-busters.

Sometimes it’s hard to tell whether you should believe what you read. Beyond the “if it sounds too good to be true, it probably is” rule, your medical dictionary and basic reference books can help you evaluate printed claims. These can come in handy when books or articles use a lot of scientific jargon, and they can also help you gauge the validity of advertisements and the like.

Some writers use ten-dollar words out of habit, or to sound more impressive. Occasionally they are used to pull the wool over your eyes. For example, one supplement company that sells its wares online and through multi-level marketing schemes says its product “supports cellular communication through a dietary supplement of monosaccharides needed for glycoconjugate synthesis.” With a little help from your medical dictionary, you can decode this to find out that “monosaccharides” are merely simple sugars, and “glycoconjugate synthesis” is the everyday process of turning sugar into energy. In other words, the product is a sugar pill (and a very expensive one at that).

Becoming an informed consumer is one of the smartest things you can do. It can save you headaches and heartache, and help you communicate more clearly with the professionals in your child’s life.

© First Signs, Inc., June 2001

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Mitzi Waltz € http://www.mitziwaltz.com/

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