What is Autism?

Introduction From Navigating Autism: the essential how-to by parent for parents

“Autism.” That was a pretty scary word to hear. We were stunned when we heard it. Our first thought was, what is it? We got the call from the psychological evaluation while going on a lunch date together. We pulled over to the side of the road and freaked out. As first time parents, we didn’t have any frame of reference for what it was, or what it meant. The Autism Society of America’s website defines autism as, “a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others.” What the hell does that mean? The only thing we knew about autism was from the ’80’s movie Rain Man with Dustin Hoffman and Tom Cruise. If that is what it means, we will resume freaking out now.

In layman’s terms, autism is a neurological disorder that will affect your kid their entire life, generally with an onset the first 3–4 years of life. Researchers still don’t know what causes it or why. It affects every child a little differently, and has many diverse levels, or a range, which is why they call it “Autism Spectrum Disorder” (ASD for short). In the most severe cares, the children are completely non-communicative—they don’t speak and are seemingly unaware of people and surroundings. Some need to use assistive devices to communicate in even the most basic way, such as the TTY for the telephone, or a kind of picture card system. On the flip side are the milder forms, such as “high-functioning ” autism, which basically means they can talk and interact with people around them, but not in a typical or socially appropriate way. They seem a little (or a lot) strange.

There are tons of books out there that deal with diagnosing autism, treatments of autism, handbooks on autism, diets for autism, and state resources on autism. Why did we write this book, then? First, most of these books don’t actually touch on what you, the parents, will have to do on a day-to-day basis to get and manage services for your kid. We know this because we looked. Additionally, all these books deal primarily with kids that have severe autism, or they were very general and somewhat vague in what to do and how to do it.

Secondly, we read countless books that all claimed to be practical guides with “answers” for parents of kids with autism. And while they provided basic information, we noticed something interesting. First, all the books seem to target clinicians or teachers. Second, while they tell you to educate yourself, find autism societies and other parents/support groups, and get government services for your kid, they all had the same fatal flaw. When we turned the page to learn how to do it, there was nothing. No contact information, no definitions of terms, no questions for us to ask when contacting someone, and most importantly, no plan of action. Additionally, there was no plan on what we were supposed to do if our kids were turned down and we needed to fight or advocate for those services. They might as well have handed us the Yellow Pages and said, “Here ya go! Good luck.”

What this book is: a practical, day-to-day guide to obtain and manage the services provided for your child by various public and private agencies. These services are absolutely essential to your child’s success in school and in life. We wanted it to answer the most important questions we asked when we were going through the bureaucratic maze: Who, what, when, where, why, and how? We will tell you Who to contact, What the agencies you’re contacting do, and When to contact them. We will also tell you Where the agencies are located relative to you (i.e., the actual phone numbers and addresses of the agency near you)—yes, we actually looked it up in all 50 states! We will explain Why it’s important to contact the agencies and How you apply for services; complete with the questions you need to be asking. We also tell you what to do in the event you are turned down. The last thing we want to do is to send you blindly to the Yellow Pages or the Internet for a random Google search that pulls up a couple of hundred thousand hits. The myriad of websites for the government agencies and other groups are not easy to get through if you aren’t already familiar with the terminology and system. A perfect example: even at a well-known bookstore chain like Barnes & Noble, we typed in the key search word “autism” in the in-store locator. Know what came up first? Harry Potter and the Half Blood Prince. With all due respect to Mr. Potter’s accomplishments, they’re not exactly helpful in this respect. Want to know where all the books on autism were? Back in the corner, behind the childcare books, and those dealing with angry children, defiant children, or coping with divorce children. There was nothing in the psychology section, self-help, or the medical section.

Why should we listen to you, you may ask yourself. You aren’t PhDs, clinicians, or caseworkers, and you don’t have college degrees in any child development related field. Well, we can give you an excellent reason: we are just like you. We didn’t know anything about autism until our children were diagnosed and had to learn to be experts in navigating “the system,” which is what you will have to do. We are Andy and Melissa, the parents of three—yep, count ‘em—three kids with autism. Kennedy, 10, Alexander (Alex), 9, and Isabella (Bella), 7. In 2005, 2006, and 2008, we received a diagnosis of autism for each of our three children. Talk about beating the odds, huh?

Every evaluation, doctor examination, psychological assessment, school meeting, and phone call you will make trying to get your kid the services they need, we’ve done three times over now. Have you ever walked out of a meeting and said, “Argh! I wish I had been more prepared.” Or, “I wish I had asked for this or that.” Or the ever popular, “Oh God, why did I say that? That was so lame.” We have walked out of meetings where we’ve said that, but we had one advantage that almost no one else did. Two more chances. Part of benefiting from our experience means you will hopefully not make the same mistakes we did, or if you do, at least you will know how to fix them.

Here’s a secret they aren’t going to line up to volunteer to tell you: there isn’t enough money to help every child diagnosed with autism that is legally entitled to services. How does this affect you and your kid? Easy. The squeaky wheel gets the oil, or, in this case, the services. Many services are automatically denied for higher functioning kids because they supposedly have the greatest chance of functioning without them. How do we know this? We were automatically denied for many services. Only after we appealed and fought for them did we get them for our kids, and they certainly weren’t very high-functioning at the time, either. In the years that we have been doing this, we have gotten pretty close to several people at various levels of government agencies, and, although no one will go on the record, they confirmed that this was the unfortunate and successful method of rationing services. They figure the people that truly need the services and are desperate enough will not go away. If you go away right away, you don’t need them that badly. It’s sad that children with severe autism will always be in the system. They will always need services. The tragic thing is that higher functioning kids who are most likely to be denied services are the ones who can benefit the most from them, and have the greatest chance of becoming functioning members of society. With help, many of them will go on to college, get married, start a family, and have a career. Granted, not everyone is going to be Thomas Jefferson or Albert Einstein—two well-known historical figures believed to have had autism—but becoming a college professor, an advocate, a behavioral therapist, an accountant, or a mechanic is nothing to sneeze at either.

We aren’t advocating raiding the funds from the lower functioning kids. Instead, we feel more awareness needs to be made for the long-term benefit of services and intervention at the high-functioning end of the spectrum as well. Honestly, we don’t know what the solution is. At the rate autism is affecting our kids, we’d better get cracking. In 2012, The Center for Disease Control and Prevention (CDC) published a shocking new statistic: 1 in 88 children born in the United States will be diagnosed with Autism Spectrum Disorder. In 2007, they had it reported at 1 in 150. That means in 5 years, the birth rate has almost doubled. That’s staggering. Especially when you consider that the swine flu is classified as a worldwide epidemic or pandemic, and the odds of catching it are currently 1 in 333. What is an epidemic? We bring it up only because the media frequently misuses this term to characterize any outbreak of a disease. An epidemic is defined as when you have more than expected cases of any disease or condition in a single year. It may seem like a minor point until you consider that children are the future of every nation around the world.

Despite what you may have heard, as of right now, there is no “cure” for autism. Although we’re going to list various services and options that are available for your kid, we are not advocating a “cure.” We know that scientists are working to understand autism and create a cure if one is possible, but all we can do now is help you cope with the bureaucratic and practical effects of your children’s condition. You didn’t do this to your child, either. We all go through that phase of feeling guilty, as if we would’ve, could’ve, or should’ve done or not done something to prevent this from happening to our children. You need to get past it, because in the long run, it’s not going to change the way things are. It may sound trite, but the reality is that this is the kid you have. When our kids were first diagnosed, we wondered, “Why did this happen to us?” Well, it didn’t, actually. It happened to our children. We should probably try and remember that it’s not all about us. Learn to love the kid you have, and not the one you thought you were going to have. Together, we’ll get the tools to help them cope. And in doing so, we will also help you get the tools and services to help you cope.

And maybe, just maybe, this book is a little cathartic, a kind of emotional purge for everything we’ve gone through and fought for—and will continue to do so. We’re sure everyone reading this book knows what it’s like to feel like you’re trapped at home, unable to go anywhere because your child is almost feral, nearly completely non-verbal, and you’re terrified they may have a full-blown tantrum; or well-intentioned people giving you unsolicited advice on how to handle your “brat;” or people acting as if you must be abusing your kids, based on the tantrums and the bruises you’ve sustained trying to keep them from injuring themselves.

In closing—at this point we know we’re supposed to say something altruistic and poignant here. Perhaps something like, “if just one parent can keep from being made to feel like a freak, or inadequate, or helpless, then we’ll know we did the right thing.” Screw that. We want to help as many people as possible. Maybe if there are enough squeaky wheels out there, the Washington politicians (yes, we mean Democrats and Republicans) will finally realize that there needs to be enough funding to cover services for the entire autism spectrum. With early intervention, these kids can go on to become anything, and not dependent on disability services their entire lives. And it is literally pay a little now, or a lot later. As parents, we want our kids to have a shot at happiness, and a “normal” life. We figured we didn’t have any right to complain about how things are unless we did something about it to help. To those of us with kids that have this condition, it’s something we can all relate to. With the numbers of kids diagnosed on the autism spectrum seeming to increase every day, we’re sure there are going to be more families like ours.

How are we doing now? Our kids are making a lot of progress. They are by no means finished with the system, nor are we. Like “they” say, it’s a marathon, not a sprint. But they are making enormous strides, as are we. They compete in national ice-skating competitions, are in Girl and Boy Scouts, have been to birthday parties of friends, learned to skydive, ride a horse, act in a movie, tae kwon do. It’s amazing. We have reached the point that we no longer feel overwhelmed or unsure what to do, and are now able to pass on the secrets to you, young apprentice. To quote the wise philosopher Yoda, “Do, or do not. There is no try.”

Good luck and God Bless.

Andy and Melissa Areffi

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