What Not to Do When Your Child Is Diagnosed with Autism

Keep Calm and Remember Autism is a Marathon, Not a Sprint

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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 it's really like to be an autism parent. With a little knowledge, you can make smart choices about how to respond and where to put your time, energy, hope, and love.​

Avoid Information Overload

Thought you'd read up on autism in just a few days? The 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 the sheer quantity of information, along with opposing views on topics such as causes, treatments, and best practices, can become overwhelming. Instead of combing the Internet for information, consider the possibility of selecting one or two well-regarded books that provide an overview of the disorder. Avoid websites (or people) eager to fill you to overflowing with information and opinions about everything from causes to treatments to adult life with autism.

Don't Worry Too Much About the "Whys" of Autism

A small percentage of parents actually know why their child is autistic. They may have autism in their families. They may know that their child has one of a few genetic disorders that is likely to cause autism. Or Mom may have been taking one of two or three medications known to cause autism when she was pregnant. 

If you don't fall into those categories, chances are you will never know the cause of your child's autism.

There are dozens of theories of what causes autism. Most are supported by at least one research study. A few of these include cell phones, WiFi, Pitocin (a medicine used to speed the process of birth), mercury poisoning, vaccines, older fathers, artificial dyes and sweeteners, and ultrasound machines. And that's just the a taste of the possibilities you'll discover if you really start looking. Unfortunately, while reading up on possible causes can cause you to feel guilty about almost everything you've done (or haven't done) in the past few years, there's nothing you can do to change the past. In short, sweating the causes of autism will probably drive you crazy—and distract you from the more important work of helping your child to function at the highest possible level.

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, though, 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; there is no "sure cure" for autism, nor is there a single path to improving outcomes.

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, has unacceptable related risks, 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.

When you feel pressured, it's important to remember that there really is no "window of opportunity" for treating autism. Yes, research shows that early intervention is very helpful—but people with autism continue to grow and learn throughout their lives. In addition, autism is not a degenerative disorder; as a result, there is no inherent risk to taking time to consider options and make careful choices.

Know That Some Safe, Helpful Treatments Are Not Considered "Gold Standard"

In the best of all worlds, treatments are selected on the basis of multiple independent double-blind studies. In fact, however, relatively few treatments for autism have been fully tested in this way. There are a number of reasons for this:

  • Funding for some types of research is scarce, in part because the treatments involved are non-pharmaceutical and thus are unlikely to result in a money-making product;
  • It is difficult to tease out which outcomes are specifically related to a given therapy when children with autism are usually involved with multiple therapies;
  • Some of the sought-after outcomes (social communication skills, for example) evolve over time, and it can be difficult to separate the results of therapy from natural development;
  • Some of the sought-after outcomes are difficult to observe and describe using typical metrics—for example, it can be hard to measure number of smiles exchanged.

Only one well-established therapy, Applied Behavioral Analysis, has been extensively researched and thus earned the "gold standard" label. ABA is intended to change behaviors rather than social skills or emotional reciprocity, and thus the outcomes are easier to measure. As a result, ABA is readily available at most schools and therapeutic centers.

But ABA isn't necessarily the best or most appropriate treatment for every autistic child. Many developmental treatments, such as Floortime, play therapy, SCERTS, and more are based on solid science, are risk-free, and may be very helpful for your child. It's 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 surprisingly easy for parents to spend most of their time focused 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 notice problems with other relationships. 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. While it does take time, energy, and money to be a good autism parent, it's important to remember that autism doesn't define your child, your family, or your future.

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 and fathers don't always know what will work for their child. Often a teacher or therapist will discover a talent, need, ability, or challenge that surprises you. In short, maternal (or paternal) 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 even if he's already five, or ten, or 22 years old.

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 physical danger, and that he is still the same person you have always loved.

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