6 Reasons Why Parents Must Become Their Own Autism Experts

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Autism is complicated. There are a zillion autism treatments, programs, schools, support groups, activities...and, depending on where you live, there may also be at least a gazillion individual therapists eager to provide their particular brand of autism treatment for your child.

Add to this the many laws, insurance guidelines, agencies, and red tape you'll probably experience as you work through school years, summer programs, and beyond.

And what about planning for adult needs, living situations, jobs, supports...?

Who can lead you through the morass of options, blind alleys, and possibilities?

Why Parents Must Become Their Own Autism Experts

Yes, there are individuals who can guide you through certain aspects of your child's life—special needs advocates, doctors, individual therapists, etc. And there are "autism life coaches" who help and support adults on the spectrum with day to day challenges.

But the reality is that you are not only your child's best advocate(s) but also the person (or people) who will need to learn about, parse through, select, fund, monitor, and manage your child's options.

Why is this the case? Here are just a few of the reasons why parents wind up taking their own unique paths through the forest of autism:

1. Autism Is Different for Every Person

If your child were diagnosed with a medical condition with a known cause, predictable symptoms, and an established treatment you could reasonably expect experts to guide you appropriately.

But autism is a disorder with few known causes, idiosyncratic and wildly divergent symptoms, and a range of treatments that may or may not be appropriate or helpful for your child.

Add to that the reality that different children respond differently to different therapies at different times in their life, that school programs are radically different from one another in approach and outcomes...

and you can see why there is really no one out there with the breadth of knowledge required to guide your path from diagnosis through adulthood.

2. Options and Funding Vary From Location to Location

For no particular reason that I'm aware of, New Jersey is rich in developmental programs and schools for kids with autism. Florida has some great behavioral programs. California has the MIND Institute, which offers a range of services and programs, while New York is a hot spot for adult services and support organizations. In schools, SCERTS is big in Rhode Island, while TEACCH programs are popular in North Carolina.

Some states, provinces, and countries offer generous funding for a wide range of therapies, while others are tightening their purse strings. 

No one can tell you exactly which services and programs are offered where, at what price, by which therapists, under what circumstances. And even if they could -- they wouldn't be able to tell you whether those services would be the right choice for your child or your family.

It's up to you to do the research and make the best choices for your particular needs.

3. There Are No "Best" Autism Therapies 

At the risk of inviting some criticism, I believe I am correct in saying that there is no "gold standard" for autism therapy that is right for every child.

Yes, some people will tell you that behavioral therapy (also called ABA) is the "gold standard" for treating autism. But it's important to recognize that while ABA is the most fully researched therapy (probably because its outcomes are easily measured), it is not necessarily the most effective (or appropriate) for any given child.

And even if you believe ABA is a good bet for your child, there are many different "flavors" of ABA, each developed by a different researcher or group. "Pivotal Response," "Discrete Trials," "Verbal Behavioral Intervention," and several other techniques all use behavioral methods at some level—but in very different ways. Which is the good one? It often depends on availability, cost, and the ability of an individual therapist to effectively connect with your individual child!

Setting aside ABA, there are many other well-established therapies that may or may not be available, appropriate, or effective for your child. Certainly your child should have occupational therapy, but what about sensory integration therapy (a branch of occupational therapy that is often helpful for autistic kids)?Would your child benefit from arts-based therapies? Play therapy? Hippotherapy (horseback riding)? Recreational therapy? It will be up to you to identify the options and determine whether they are worth exploring.

Then there are the many developmental therapies which are increasingly popular and well-regarded. Floortime, RDI, TEACCH, and SCERTS are just a few of the options that may be available either privately or through your school.

Once you've explored the non-biological, non-medical interventions for autism, you'll probably also want to look into additional possibilities. Could your child benefit from medications such as anti-anxiety drugs or medications that reduce hyperactivity? What about nutritional interventions? There are doctors and nutritionists who are professionals in these fields -- but of course they are specialists, and can't tell you much about, say, mixing medication and drama therapy! 

Bottom line, all of the therapies and interventions listed above (and quite a few more) can be helpful, and any may be a good choice. But no one but you can make the final decision about which is best for your child at any given point in his or her life.

4. Family Finances and Priorities Vary

Your doctor, guidance counselor, or therapist may recommend art therapy, RDI, or another therapy that sounds (and probably is) wonderful. Support groups may suggest private schools that could be "life changing" for your child.

But if neither your school nor your insurance company will fund that particular therapy or school (as is often the case), should you dig into your savings to pay for it?

There are families that have the means to start up entire schools just to make a particular type of therapy available to their child. There are families who spend down their savings and retirement funds to pay for therapies and special schools. And then there are families who pick and choose among options carefully to avoid running into financial problems as they provide for their autistic child's needs.

No one can tell you how much a therapy, therapist, school, or out-of-school opportunity or program is worth to you or your child. What's even more significant is the reality that no one can tell you "if you pay out of pocket for X, your child will not need Y in ten years."

Sure, that expensive school could make all the difference for your child—but then again, maybe it won't. And the likelihood is very, very strong that your child will be autistic throughout his or her life. That means that you may wind up spending so much on early interventions that you won't have the funds you need to support your autistic child as an adult—let alone send his or her siblings to college and still have money for retirement! 

Where should you put your money? You can get advice, but in the long run it's a personal decision.

5. Ideas About Education and Upbringing Vary

What's best for your child?

  • A private school that specializes in serving the needs of children with autism?
  • Full inclusion in general education classrooms in the local public school?
  • Partial inclusion in general education in addition to specialized programs and therapies?
  • An ABA classroom? A SCERTS classroom? A TEACCH classroom?

Every one of the options listed above might be the best for your child—or not. And there's no easy way to know, ahead of time, which is likely to be most effective. The decision, therefore, is often based on availability and parental choice.

Should your autistic child be included in typical recreation programs, church services, and social events? Should he or she instead take part in adaptive or specialized programs? In some cases, the decision will be made for you on the basis of your child's behaviors and abilities. But assuming that a choice is possible, it will be yours. There's no absolute right or wrong when it comes to inclusion.

6. Beliefs About Autism Vary

What, exactly, is autism? Is it a handicap or a strength? Is it an alternative way of thinking about and perceiving the world—or is it a disorder of thought and perception? The answer to those questions depends, in part, upon the severity of autistic symptoms and the philosophy of the autistic individual and their family.

Based on your feelings—and, of course, your child's feelings—you might be inclined to steer clear of certain therapies or select others. You might choose certain kinds of schools based on your philosophy. You might decide to spend your money not on behavioral therapies but rather on musical instruments, chess lessons, or camping gear in order to support your child's interests and strengths rather than "treating" her challenges and differences.

Seek Advice & Then Make Your Own Decisions

Doctors, teachers, therapists, guidance counselors, and other parents can all provide valuable insights and guidance about autism. Books, videos, and lectures are valuable too. 

In the end, though, each path will be unique. It will be guided by parents and by autistic individuals whose beliefs, interests, preferences, talents, and desires will all play a role in decision-making. And that's okay. Because every life is unique.

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