What Happens When a Child Is Diagnosed with Autism:
Most of the time, autism is diagnosed by a developmental pediatrician
, neurologist, psychologist, or team of professionals. The diagnosis is made on the basis of behaviors, delays, and language deficits. That means that no one can diagnose autism in an infant, and (unless your child has Rett syndrome
or Fragile X
) no medical test can "prove" that a child is truly autistic.
What an Autism Doctor Will Provide:
Most autism experts will provide a specific diagnosis on the autism spectrum. You may walk away with a diagnosis of Asperger syndrome, "classic" autism, or PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified
). Occasionally, your child will receive additional diagnoses such as "social anxiety" or even "non-verbal learning disorder." All of these are descriptive of your child's behaviors -- and different experts may give different labels depending upon their experience and preference.
Autism Doctors Will Not Provide a Definite Prognosis:
Most parents will ask a doctor, "Will my child get better? How MUCH better?" Most reputable doctors will respond with vague answers or even no answer at all. That's because no one really knows how far your child with autism will develop and even children with profound disabilities can amaze parents and professionals with their developmental leaps.
Autism Doctors Will Rarely Provide a Treatment Plan:
Autism Doctors Can't Provide Educational Direction:
Parents will wonder whether they should press to have their child included in typical classrooms, provided with a special class, or educated privately. Since every child, school, classroom and program is different -- and doctors have never seen your child in a group setting -- reputable doctors will rarely recommend specific educational setting for your child.
Autism Doctors Can't Tell You What Will Work:
Even a DAN! doctor can't tell you for sure which treatments will work for your child. He may recommend a particular diet, supplement, or treatment program
. But until you try it, there's no way to know whether it will work for your individual child.
Autism Doctors Can't Tell You Why Your Child Has Autism:
Unless your child has Fragile X or Rett syndrome, both of which can be identified through genetic markers, your practitioner will not know why your child is autistic
. Depending upon his leanings, you may hear words like "genetics," "vaccines," or "inflammation." But the truth is that no doctor has enough information to reliably explain the factors that lie behind your child's diagnosis.
Autism Doctors Can't Help You Fund Your Child's Treatment:
Your doctor may offer suggestions for treatment. He or she may support your suggestions for additional treatments. But don't expect your doctor to have any idea how you are supposed to pay for those treatments. While some may, in fact, be covered under insurance and/or early intervention programs, it's a rare doctor indeed who can guide you through that maze.
Autism Doctors Are Unlikely to Help You Sort Through Online Information Sources:
While some doctors will recommend individual sites as particularly helpful, doctors' choices are based on their individual beliefs and preferences. A doctor who believes strongly in vaccinating is unlikely to know where you should go for information about vaccine risks and a DAN! doctor may not have any idea where to find useful information about pharmaceutical options for managing behavior.
The Bottom Line: Know Your Doctor's Limits:
Even today, autism is a mystery. No one really knows for sure what causes it, what cures it, or even what it is. Some doctors, particularly those trained in the DAN! protocol, will give you their opinion. But the moment you start digging deeper, you'll find that there are many other well-supported opinions out there.
Of course, that doesn't mean your doctor can't help at all. But it does mean that you'll have to look elsewhere for direction as you think through treatment options, educational settings, behavior management and other issues. So where should you look? A few options include:
- Regional and hospital-based autism centers, which offer a range of services and treatment options;
- Parent support groups, which offer a wealth of experience in areas ranging from therapies and therapists to schools and school programs;
- The Internet (with the caveat that "HonCode," .gov, .org and .edu sites are usually more carefully researched and edited than .com sites);
- Books (check carefully to be sure you know who the author is and whether he or she has a particular ax to grind);
- School-based parent education programs;
- Autism conferences, which are now held all around the world.
In the long run, for better or for worse, you will be making many decisions based on your own parental perspective, knowledge, preference and comfort level. Of course, that's the case for most parenting decisions and it seems to be the case that when parents are engaged in the process of helping and working with their child, outcomes are improved.