If you're like many moms and dads, your world changed when you first heard the word "Aspergers" or "high functioning autism" (HFA) used to describe your youngster. 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.
What should you do – and perhaps more importantly – what shouldn’t you do?
The DOs—
1. Do start with the basics. Literally dozens of treatments are available for Aspergers and HFA. Start with the basics (i.e., treatments that are easily available, funded, and appropriate). For most families, the basics include speech, occupational and physical therapy. For younger kids, home-based therapeutic programs are often available. Preschoolers and school-aged kids may be offered therapies through the school system.
2. Do add therapies slowly. If you decide your youngster is not getting all he needs, you may be tempted to jump into many different interventions at the same time. Of course, there are interventions that have an immediate impact for the better or worse, including some pharmaceuticals. Most treatments, however, require days, weeks or even months to really make a difference. By making changes slowly and observing your youngster's reactions, you can see what works and what doesn't.
3. Do avoid information overload. Thought you would “read up” on Aspergers in just a few days? Truth me, plenty of parents wind up spending unending weeks and months reading every website, blog and book, and attending every conference – but at the end, they're more confused than when they started. It's a good idea to inform yourself about the options, but one or two good books (see below) will give you a good gist without overloading you with 10,000 different opinions about everything from causes to treatments to adult life with Aspergers or HFA.
4. Do determine your youngster's needs. What exactly are your youngster's needs and deficits? We are talking about a spectrum disorder, which means that your youngster may have many needs – or just a few. Does your youngster have speech delays? Sensory issues? Social deficits? By asking all of these questions of your doctor and your family and local support groups, you can start to create a picture of the services your youngster might need.
5. Do limit your interaction with other parents of kids on he autism spectrum. Of course, it's a good idea to reach out and get to know other moms and dads who are in your situation, especially as you look into local therapists, schools, funding, etc. But be aware that parents with kids on the autism spectrum 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 youngster. Every child with the disorder is different!
7. Do remember that your youngster has not changed. Yesterday, your youngster was not labeled with a disorder. Today, he has been handed that label by a professional. But the label doesn't change your youngster or your love for him. All the good things you saw in your youngster yesterday are still there today. Part of your job will be to help him build on those strengths to compensate for the challenges ahead.
8. Do remember to relax. Your youngster's diagnosis is important. But, so is your own life, your other kids, your health, and your finances. It's o.k. to take a break from time to time. Only when you're at your best can you hope to give your youngster all he needs to grow, develop and enjoy life!
9. Do use your autism resources. Now that you know what your youngster needs, you need to determine whether those therapies are immediately available to you -- and if they are, how to put them in place. If you are in a rural area, you may have fewer options available than if you're in a city. Your medical insurance may cover only a fraction of the therapies you've discovered. Your school district may have specific options available. Once you know what's immediately available, you can set up a program that suits at least some of your needs.
The DON’Ts—
1. Don’t panic. For most moms and dads, a diagnosis is like a kick to the groin. You feel breathless and overwhelmed. Your world has been turned upside down. But remember that the disorder, despite its many challenges, is not a dangerous situation. There's no need to panic! You and your entire family will benefit if you can think clearly and calmly.
2. Don't assume you always know best. Moms and dads are usually good at observing, describing and understanding their kids. Parents also, of course, need to advocate for their kids in school and elsewhere. But even parents don't always know what will work for their youngster, and often a educator or therapist will discover a talent, need, ability or challenge that surprises you. In short, parental instinct is wonderful, but it has its limits. And by insisting that you always know what your youngster needs, you may limit the options available to him.
3. 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 spectrum disorders 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 youngster.
4. Don't choose treatments under pressure. As you enter the autism world, you will meet educators, moms and dads, doctors and therapists who are absolutely certain they know what's best for your youngster. With all the best intentions in the world, they will absolutely insist that you take your youngster to Dr. X, or start your child on this treatment or that treatment. 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 professional in your life.
5. Don't forget to breathe. Despite media hype to the contrary, it is extremely unusual for a youngster to be accurately diagnosed with the disorder - and then "recover" perfect normalcy. Much of the time, though, if your youngster is receiving solid one-on-one therapy, support, and love, he will develop skills and relationships – and continue to do so throughout life. In other words, treating Aspergers or HFA 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 youngster is likely to remain autistic to some degree with all the ups and down that go with that diagnosis. So take time to enjoy your youngster, your spouse, your family, and your life. Get some fresh air. Remember that your youngster is not in danger of life or limb, and that he is still the same person you have always loved.
6. Don't obsess about the disorder. It's easy to get obsessive. In fact, it's surprisingly easy for parents (especially moms) to focus almost entirely on their youngster's problems. Unfortunately, obsession can create more problems than it solves. More than one marriage has fallen apart as the result of one spouse becoming too focused on the issues to attend to the marriage. Many households have gone broke in the attempt to provide every treatment, no matter how costly or obscure. And it's common for siblings of the "special needs" child to feel unfairly neglected by parents who seem to care only about supporting the “special needs child.”.
7. Don't overload your youngster or yourself. There is an understandable desire to see results from your efforts. And with so much emphasis on early intervention, moms and dads often want to see their kids "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 youngster be exhausted, but it may be impossible to know what's really working. Remember that there really is no "window of opportunity," and your youngster will continue to learn and grow throughout his life.
8. Don't rush into action. The research says that early intervention is important. By the same token, however, these kids grow and develop over time just like everyone else. It's tempting to leap into as many therapeutic treatments as you can. But until you know what's best for your youngster, it's a good idea to take it slow.
9. Don't worry too much about the "whys" of the disorder. There are over 24 theories of what causes it (e.g., cell phones, WiFi, pitocin, mercury poisoning, older fathers, genetics, artificial dyes and sweeteners, etc.). In short, unless your youngster is actually suffering from a physical problem (e.g., food allergy, lead poisoning, etc.), worrying about the causes of the disorder will just drive you crazy.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
