7 Things To Do After Your Child’s Autism Diagnosis

So, your kid just got diagnosed with autism, PDD-NOS, ADHD, Asperger Syndrome, or some other type of autism spectrum disorder.

I’m sorry. That sucks.

But it doesn’t suck as bad as you think it does.

Honestly, this is worst time you’ll ever have to go through. It’s probably not the hardest, or most difficult time you’ll ever have. I won’t kid you — there are some tough tasks ahead for both you and your child. But you’ll be ready for them when the time comes. I promise. Here are the first steps to take when your child has been diagnosed with autism.

Step One: Pour Yourself A Drink

You’ll be tempted to mourn the loss of your child, like he or she has been handed a death sentence, body living, but soul — and dreams —dead forever.

Cut that shit out.

You’re not drinking because you’ve lost a child. This is a toast, a celebration! You’re drinking because you’ve still got a child, and a pretty damn special one, at that. Would you be carrying on so if a doctor had told you your kid was left handed? You child’s autism could end up being merely a “difference,” not a disability. Or it may wind up being much more life altering. You don’t know in the beginning where your kid is going to end up on the autism spectrum. And where they are today on the spectrum might be different five years from now. The future is not yours to know. Only time will tell. Now, take a sip.

You’re drinking because you’re beginning a journey, a long, strange trip from which you, your child, (spouse, siblings, grandmother — anybody who takes the journey with you) will emerge better people. It will transform you, change you for the better, turn you into a kind of superhero.

And you’re drinking because, let’s be honest, you’ve had a terrible day. Your baby was just diagnosed with a lifelong development disorder.  You need to take the edge off, and unwind.

Step Two: Contact your state’s Early Intervention Services.

Nearly every state has an early intervention program for children with developmental delays, though the quality of service varies widely state-by-state. Early treatment is the best way to help children with autism. Find out which state department (most likely a facet of the Department of Health) is responsible for Early Childhood Development Services. Call them. They’ll either send your kid to a developmental pediatrician, and/or perform their own home assessment. Your case worker will make recommendations about the kind of therapy your child needs (an hour of physical therapy each week, an hour of speech, half-hour of occupational therapy, 10 hours of ABA therapy, etc.) Some of these state services have a waiting list, so make the call today. You need a starting point. This is it.

Step Three: Contact family and friends.

My wife called her mother the moment we got home from the pediatrician’s office.

blue christmas

Blue Christmas—Me and Roc with my Mom, Christmas 2003, about four months after my son’s autism diagnosis. Note the deer-in-the-headlights panic on my face, Grandma’s look of sad resignation, and Rocco’s oblivious beauty.

“Mom, Rocco was diagnosed with autism today,” my wife said. Then she handed me the phone, bent over, and vomited.

I stared at the phone, as my wife wretched into the sink. I heard my mother-in-law’s voice drifting up, tinny and tiny from the receiver in my hand.

“What? Hello? Hello!”

I hung up. I didn’t know what to say.

I called my mother later that day, and things weren’t much better. My son’s autism diagnosis didn’t seem real until I told my Mom about it. It got more real each time I told a family member or friend. Over time it sounded like I was reading from a terrible script, one where I tried to act brave and stoic in the face of tragedy.

These were painful, unpleasant conversations, but necessary. You’re going to need a solid, dependable support system in the days ahead. You’ll be surprised by the outpouring of support you will get from most people. You might be surprised by the lack of support you get from others. Sometimes, when the going gets tough, certain members of your inner circle will high tail it out of your life. Forget them. They weren’t true friends in the first place. They’re dead, negative weight that will slow you down on the journey ahead.

Start building a strong autism support system —people who are interested in learning more about the disorder, and how it effects your child. See who steps up. These are the people that love you and your child. They want to help. Let them … and learn to accept their help graciously.

Step Four: Discover your school district

Even if your kid isn’t yet school age, he or she will become your school district’s responsibility by age three. Get familiar with the special services your school district offers. Call the school board, and find out who your child’s case worker will be. Ask who heads up the Child Study Team. Arrange to meet these people to discuss your child’s educational plan … and bring coffee and doughnuts. Ask if the school district has speech, occupational, and physical therapists on staff, or if these services contracted out? What about a child behaviorist, and a child psychologist?

If your district can’t provide proper services for your child, consider an out-of-district placement.  Research a special education lawyer or advocate to help with the educational piece of your child’s treatment plan. Don’t assume your school district will do what’s best for your kid — school administrators are responsible for keeping costs under control, and special education is often targeted for budget cuts.

Be prepared to fight your school board in order to get your child the services he or she needs, but try not to. You’ll catch more flies with honey than vinegar, and nobody likes an obnoxious parent (and that dislike can spread to their kid). Start out on the right foot with your school district, and try to stay there.

Step Five: Research, research, research!

Get ready to learn … a lot!

Behavioral analysis therapy for autism? Biomedical intervention? Special diets? Pharmaceutical drugs? Horseback riding? Swimming with dolphins? There are a million different therapies for autism, and a basic Google search for “treating autism” will give you an overview of the most popular ones. It’s the Internet, so make sure you double and triple check the sources of any article you choose to follow.  But research as many different treatment options as you can. One or more of them is going to help your kid, but you won’t know which until you explore all your options.

Step Six: Call your health insurance company

Contact your health insurance carrier, and see what services are covered. They may pick up the tab for physical or occupational therapy sessions not covered by your state’s Early Intervention Services.

Talking to your health insurance carrier takes some tact. Some believe telling your health insurer about your child’s autism will raise a red flag, and your carrier may be reluctant to cover future autism-related expenses.

I figured honesty was the best policy, so I informed our health insurance carrier about our son’s autism. The woman on the phone was very friendly and  sympathetic; she had a nephew who was on the spectrum, too.

But over the years, only a fraction of our son’s autism-related expenses were covered. We’ve only recouped a few hundred dollars out the more than $50,000 we paid to doctors, therapists, and “autism specialists.”

Autism treatments, especially those “off the beaten path,” can get expensive. Find a wealthy relative, and get friendly.

Step Seven: Make a plan — don’t stick to it

Once you’ve meet with a case worker from Early Intervention and/or a developmental pediatrician, done some research, and called your health insurance carrier, you’ll be ready to make an autism treatment plan. You might say, “Okay, our child qualifies for six hours of ABA therapy at home, and our health insurance will cover a few visits to physical therapy and occupational therapy. If we break into our savings account, we can try Treatment B, C, and D, too.”

Find a sympathetic pediatrician, or a DAN doctor if you’re trying a biomedical approach to treating your child’s autism. You may want to visit a nutritionist, and/or a neurologic pediatrician. The best recommendations come from other patients and parents, so check out the autism message boards, and read reviews of the medical professionals you plan to visit. Put in the time and effort, and make the best autism treatment plan you can for your child.

Then get ready to toss that plan out the window.

Treating autism —loving and caring for someone with autism — requires a lot of flexibility and patience. It requires both meticulous planning, and the ability to fly by the seat of your pants. You never know how your kid is going to react to something new. Plan ahead, but go with the flow.

There are a ton of different treatments options for children with autism. But not every one works for every kid. There is a lot of trial-and-error, a lot of, “let’s try this for a few months, and if we don’t see any improvements, we’ll try that. And if that doesn’t work, we’ll try the other thing.”

Try, and keep on trying. It may (will) take a while, but if you’re persistent, you’ll find an effective treatment for your kid’s autism

Finished that drink? Good. Don’t pour another. Fire up a web browser instead, and learn something. Your kid is counting on you.