by Bobbi Sheahan with Dr. Kathy DeOrnellas, Ph.D.
Current statistics place more than one in every one hundred children on the autism spectrum. If you’ve just received a diagnosis that your child is on the autism spectrum, I have a few suggestions for what you might consider doing first.
I was in your shoes just a few short years ago, and I am joined today by Dr. Kathy DeOrnellas, who helped to light the way for my family. Since I can’t bring you to her office – and I would if I could – I’m bringing her to you.
Photo Credit: Carl Fields
1. Breathe. You can’t judge yourself – or your child, or what your parenting experience is going to be like – by your hardest day & I am here to tell you: the early days are the hardest. Remember, you still have the same child you had before somebody pointed to him and said the word “autism.” I won’t annoy you with the phrase, “New Normal,” (all right, I guess I just did), but I want to urge you NOT to make any judgments about what the rest of your life, or even the next year, is going to be. Now is NOT the time to torture yourself with the Big Questions about your child’s future.
Remember how clueless you felt when you first became a parent? Try to use that as an analogy now. You will gain the confidence that comes with experience every day, and autism won’t always be new and surprising to you. If you keep a journal, it will be easier for you to look back a year from now (or even a month from now) and see how far you and your child have come. It may also be a good outlet for you.
In the meantime, if you don’t listen to me about anything else, please believe this: it won’t always be as hard as it is right now. Sometimes it gets better, sometimes it gets worse (okay, even a lot worse sometimes), but the newness and the shock will wear off, and you are stronger than you think. When I am tempted to curl up in the fetal position with my thumb in my mouth, I quote Joan of Arc to myself: “I am not afraid; I was born to do this.” Sometimes, I even use a French accent to make it more convincing.
2. Reach out for useful information. Having a diagnosis can be useful because it points you in the direction of help. There are autism support groups in every city and in most small towns. There are even Special Needs PTA’s in some schools. The internet can be a wonderful resource. Autism Speaks www.autismspeaks.org has a 100 Day Kit that is an amazing starting point for the first 100 days after diagnosis. http://www.autismspeaks.org/family-services/tool-kits/100-day-kit In no time at all, you won’t be suffering from a lack of information; you’ll be wishing that you had enough time to sort through all of the information that is available to you.
As you sift, you are going to become the expert on your child’s condition. Actually, guess what? You already are! Fortunately and unfortunately, every kid on the spectrum is a little bit different. You are your child’s first and best advocate, and your child is watching you and learning how to be a self-advocate. Don’t be afraid to stand up for yourself either—or to appreciate the wonderful doctors, therapists, and teachers who can light the path for you. I am so grateful that Dr. DeOrnellas gave us useful help from the very first time we met, and that she made it clear from the outset that she respected us as the parents and that she liked our child. Yes, it’s true, and I can’t stress this enough. There were times I joked that we came to see her just so someone would tell us that we were doing a good job that week. You, the parent, are the one who has the most opportunity—and, frankly, the obligation—to help your child for the largest amount of time each day, week and month, and time is precious. By the time you are in the office of a professional, you have already seen a lot and been through a lot. If you aren’t getting useful insights and practical help within the first few sessions, consider looking elsewhere. If you and your child aren’t comfortable with a professional, it doesn’t matter how many credentials he has; he may be a help for some other family, but he isn’t a good fit for your family.
3. Take it one step at a time. If you are working with your child’s school or therapist, they are going to have recommendations about what to approach first. Safety issues are paramount. If your child tends to run away (the professionals call it elopement, but there’s nothing romantic about it), self-injure, be aggressive to others, or eat things that aren’t food (that’s called pica), containment and eventual modification of those behaviors is going to take precedence over attention-getting stuff like spinning, hand-flapping, meltdowns, or reluctance to potty-train. Help is going to be available for all of these things, and you will step through each door with more confidence as you go.
4. Take care of yourself. Remember the last time you were on an airplane and the flight attendant told you to put on your own mask first? Think of your current situation as a loss of cabin pressure. You are mobilizing while experiencing a combination of shock and grief (with gusts of exhaustion), so give yourself a break. Truly. Reaching out for friendship and support is at least as important as reaching out for information.
At first, your life may seem like it’s being consumed with therapies, IEP’s and stress. It doesn’t have to feel that way. If you have supportive friends, family, and babysitters, now is the time to ask for help. If you don’t, now is the time to reach out and find them. If you’re shaking your head right now, I understand. When our daughter was in the midst of the behaviors that led to her eventual diagnosis, we lost friends AND babysitters. There are people out there – plenty of them -- who will be willing to help if you ask.
And while you’re reaching out, don’t stop reaching out to your child. Even if your child doesn’t want a hug – maybe he isn’t a fan of being touched -- don’t lose hope. Get hugs where you can, and know that you can work on your child’s aversion to touch and make progress with that too. In the meantime, you will want to be gentle to yourself. Getting extra sleep will do you a world of good. If your mom is willing to spend an afternoon at your house with the kids while you go to her house and sleep, go for it.
Photo Credit: Carl Fields
Photo Credit: Carl Fields
5. Dance in your kitchen. Not a dancer? Well, whatever you do to be silly & make yourself smile, it’s time to do it. Knock-knock jokes? Hey, if they work, don’t knock ‘em. Laughter is great medicine & so are hugs -- with your child, your spouse & anyone else who will join you. Getting a diagnosis isn’t the end of your life, or your child’s. One of my current favorite bloggers is Cyn Huddleston, an adult on the autism spectrum, who has a great way of putting autism into perspective: she says it isn’t a tragedy; it’s a trajectory. There are a lot of us on this trajectory with you & it’s an honor to meet you.
Bobbi Sheahan and Kathy DeOrnellas, Ph.D. are the wonderful authors of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011). Portions of this article are excerpted from Chapter 3 of the book, which is available at www.fhautism.com and wherever books are sold. Bobbi’s website is www.bobbisheahan.com and she would love to hear from you at me@bobbisheahan.com. You can also connect with her on Twitter: @BobbiSheahan 
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