1. You’re not alone. No, really, really not alone. About one in 88 of us are on the autism spectrum. Throughout the world, autism affects all races, social classes, religions, and income levels. You are going to meet some amazing people who are walking this road right with you. You may even find that you or your spouse are on the spectrum, but that’s a whole ‘nother subject.
2. You’re worrying about the wrong stuff. The behaviors that embarrass you in public probably aren’t the ones you need to really be concerned about. The quirky and repetitive behavior, lack of eye contact, communication challenges, lining up the toys, social immaturity, the fixation on favorite topics or objects – those may be the things that others notice, but my daughter’s sensory challenges (that means she didn’t feel pain – or didn’t seem to — in situations where others would have been screaming) and her lack of understanding of danger were the things that were real dangers. The fact that my child spins and repeats herself may freak some people out, but it’s not in the same category as running away or hurting herself or someone else.
3. Nobody else is an expert on YOUR child. Dr. DeOrnellas, my co-author and one of the most helpful people on our family’s road to some understanding of autism, will tell you herself: she may know more than you do (heck, more than just about anybody does) about autism, but you know more about your child than she or any other professional ever will. Trust yourself, and arm yourself with all of the wisdom and support you can. When you find a professional or a friend who is really helpful, you will never take them for granted. When you are interacting with a school, a counselor, or anyone else, it’s good to start expecting that they really want to help and that they will deal with you in good faith. (You can always get mad at them later if you really have to, and hopefully you never will.)
4. Do not take garbage from anybody. You may find some people who are overly anxious to judge your family, or your mother-in-law may think that autism is a figment of your imagination. This is their problem; don’t let them make it yours. I don’t care if you have the most helpful relatives in the world; if the cost of their help is that they drive you crazy, their help ain’t helpful. The same logic also applies to the intrusive stranger in the grocery store who thinks that she is being helpful.
5. You will find angels in the most unexpected places. We found that we had only the nicest people left in our lives because, well, a lot of the rest just fled. And maybe the stranger in the grocery store will surprise you with her kindness too.
6. You are parenting a child, not a diagnosis. It may feel that way right now, but you won’t always feel that way. The first couple of years after a diagnosis can take you from shock to mobilization to the realization that your life has become one long car drive from one therapy to another. Over time, you really will figure out what works for your child and your family. And if it doesn’t lend to the peace of your family and the well-being of your child, it doesn’t matter who says that a particular therapy is The Answer to Autism. I applaud parents who are fearless about trying things that might help their child. When something works, there are a lot of us cheering for you, whether that particular approach helped our child or not.
7. If you’ve seen one child with autism, you’ve seen one child with autism. Nobody can tell you what your child will be capable of tomorrow or next year. Keep a journal and listen to kind people who haven’t seen your kid in a while so that you don’t lose perspective on how far he’s come. And, for that matter, how far you’ve come. You will be impressed.
And One More Thing: And, finally, please, please, take care of yourself. Do not underestimate the basics like sleep, a good support system, sleep, and a good cry. And more sleep. Children can make you tired anyway. Autism can definitely make you tired. You and your child are living with a challenge that will test you to the end of your patience. There have been studies that have likened the stress of special needs parents to that of front-line soldiers in combat. As Leah Kelley recently wrote, we live with a level of stress that most people experience only occasionally. (http://30daysofautism.wordpress.com/)
Our children are watching us, even if they can’t tell us with words, and they need us.
Bobbi Sheahan and Kathy DeOrnellas, Ph.D., 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). It 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 firstname.lastname@example.org.