After the Autism Diagnosis:
If you're like many parents, your world changed when you first heard the word "autism" used to describe your child. And, like any good parent, your first inclination may be to learn all you can, find the best doctors, and take aggressive action to fix the problem. Before you launch yourself into action, though, you might want to get a quick overview of what you're letting yourself in for.
Avoid Information Overload:
Thought you'd read up on autism in just a few days? Truth is, plenty of people wind up spending unending weeks and months reading every website, blog and book...attending every conference...and at the end, they're more confused than when they started. Yes, it's a good idea to inform yourself about the options. But one or two good books (I recommend the Autism Guide for Dummies
by Steven Shore) will give you a good gist without overloading you with 10,000 different opinions about everything from causes to treatments to adult life with autism.
Don't Worry Too Much About the "Whys" of Autism:
There are over two dozen theories of what causes autism
. Most are supported by at least one research study. A few possibilities -- cell phones, WiFi, pitocin, mercury poisoning, older fathers, artificial dyes and sweeteners. In short, unless your child is actually suffering from a physical problem such as a food allergy
or lead poisoning (and it's worth your while to check into both), sweating the causes of autism will probably drive you crazy.
Limit Your Interaction with Other "Autism Parents":
Of course, it's a good idea to reach out and get to know other parents who are in your situation especially as you look into local therapists, schools, funding, and so forth. Be aware that parents with autistic children are often passionate about the therapists and treatments they've selected. And it's easy to get overwhelmed as parents insist that their approach is the only approach. The truth is that no one knows the best approach for your child.
Don't Choose Treatments Under Pressure:
As you enter the autism world, you will meet teachers, parents, doctors and therapists who are absolutely certain they know what's best for your child. With all the best intentions in the world, they will absolutely insist that you take your child to Dr. X, or travel hundreds of miles for the cure offered by Dr. Z. Nod politely, take notes, and do your own research. If the treatment sounds too good to be true, costs too much money, or has no research behind it, you're under no obligation to say "yes." Nor are you under any obligation to report back to the insistent individual in your life.
Don't Choose Treatments Based Solely On the Scientific Research:
In the best of all worlds, treatments are selected on the basis of multiple independent double-blind studies. If only that were possible in the autism world! In fact, few treatments for autism have been tested in this way -- and even those that have are questioned based on the quality of the research. That doesn't mean that none of the treatments are helpful; only that they haven't been fully researched. As a result, it's probably worth your time to look into several of those that seem most available and relevant to your child.
Don't Obsess About Autism:
It's easy to obsess on autism. In fact, it's surprisingly easy for parents, especially moms, to focus almost entirely on their child's autism. Unfortunately, obsession can create more problems than it solves. More than one marriage has fallen apart as the result of one partner's becoming too focused on autism to attend to his spouse. Many households have gone broke in the attempt to provide every treatment, no matter how costly or obscure. And it's common for brothers and sisters of children with autism to feel unfairly neglected
by parents who seem to care only about supporting a disabled sibling.
Don't Assume You Always Know Best:
Parents are usually good at observing, describing and understanding their children. Parents also, of course, need to advocate for their children in school and elsewhere. But even mothers don't always know what will work for their child and often a teacher or therapist will discover a talent, need, ability or challenge that surprises you. In short, maternal instinct is wonderful, but it has its limits. And by insisting that you always know what your child needs, you may limit the options available to him or her.
Don't Overload Your Child (Or Yourself):
There is an understandable desire to see results from your efforts. And with so much emphasis on early intervention, parents often want to see their children "fixed" right away. But it's best to avoid the temptation to leap into multiple therapies with the hope that SOMEthing will work. Not only will you and your child be exhausted, but it may be impossible to know what's really working
. Remember that there really is no "window of opportunity,"
and your child will continue to learn and grow throughout his life.
Don't Forget To Breathe:
Despite media hype to the contrary, it is extremely unusual for a child to be accurately diagnosed with autism and then "recover" perfect normalcy. Much of the time, though, if your child is receiving solid 1:1 therapy, support, and love, he will develop skills and relationships and continue to do so throughout life.
In other words, treating autism isn't about rushing to a cure. Instead, it's about finding a set of supports and a way of life that will work, with tweaks and adjustments, over time. No matter how quickly you move, and no matter how much money you spend, your child with autism is likely to remain autistic with all the ups and down (and yes, there are "ups") that go with that diagnosis.
If you can, take time to enjoy your child, your mate, your family, your life. Get a little fresh air. Remember, if you can, that your child is not in danger of life or limb, and that he is still the same person you have always loved.