Ten Things Autism Has Taught Me

Actually, autism has enlightened me much more than the short list below would indicate. Including all of that information in one post would take longer than my attention span can tolerate, and yours too. These are the gems that have come into play at our house most often, or at least most recently. In my opinion, they are the most helpful for parents who are new to autism.

1. Autism currently has no cure. Some of you may disagree with this statement, and you are perfectly entitled to do so. There are numerous therapies available throughout the world, some more successful than others. Some are extremely expensive and yield questionable results. Some are even harmful to the children they are supposed to be helping. When it comes to promising results, ask these two questions: How much does it cost? and Does this sound too good to be true? Your own common sense should be your guide.

I recently heard a person speak who claimed to have "come out of autism". Oh, if only it were true! My husband heard this statement as well, and we looked at each other in disbelief. This person, although very successful, still exhibited many of the key traits that lead to a diagnosis of Asperger's: poor eye contact, monotone voice, repetitive behaviors to name just a few. While he may feel more at ease socially through learned coping strategies, his autism is still part of his personality. Now, if telling himself that he is over it helps him get through the day, so be it. But to say publicly that he has been cured is misleading.

We are fortunate to have many medications that temporarily alleviate some of the variables in the autism equation: ADD/ADHD, depression, anxiety, seizures, to name a few. There are also behavior therapies that enable autistic individuals to develop strategies or scripts for getting through difficult situations. None of these is a cure, because at the end of the day, the autism is still a pervasive part of that person's being. These options, however, do make life a little easier for our children and for us.

2. Autism is inherited. I was once on the heavy metals bandwagon, convinced that Ian's vaccinations had caused him to regress at the age of two. But like it or not, as I examine the personalities of relatives on both sides of our family, it is perfectly clear that my son's issues did not appear mysteriously. He is the exaggerated version of our family's quirkiest character traits. So, even if no one in your family has ever been officially diagnosed until your child was, chances are autism has been working it's way through your family tree for generations.

You can imagine my relief to know it wasn't all those tequila shots I did in college!

3. Kids with autism need love and affection, even if they have difficulty showing it themselves. Many parents are hurt when they realize that autism may cause their children to shun physical closeness and affection. The kids still need to know they are loved unconditionally - so tell them every day that you love them. Help them understand that they are an important part of the family, even if they prefer to be left alone. Find different ways to demonstrate affection. About a year ago I heard a report on NPR about a scientific study which showed that people who regularly hold hands with a loved one tend to be healthier than those who do not hold hands. When I told Ian about this evidence, he immediately agreed to hold my hand every morning as we walk to meet his carpool for school, for the sake of being healthy. He is much more affectionate now that he doesn't mind holding hands with others. Sometimes close contact with another living being is all it takes to bring him out of a funky funk. Our dog does wonders for him. Soft, quiet, unconditional love works with neurotypical kids. . .and it works with Aspie's too.

4. Yelling at your child does not improve his hearing. Before I knew for certain what Ian's issues were, the fact that I could be standing 2 feet in front of him and feel completely ignored confused me to no end. Whether he was hyperfocused on the television or a toy or just staring off into space, I couldn't understand how he could have absolutely no reaction to my voice. Increasing my volume only served to make me hoarse, because his reaction was still zero. This was when I started to suspect autism was at play. Now, a light touch on the shoulder and a simple whispered command in his ear is the most effective way of getting his attention when he has retreated into his safe place. It saves me a lot of frustration, too.

5. Every autistic child is different. Just as every typical child has strengths and weaknesses, so do our spectrum children. What works for Ian, may not work for your child. Rely on your instincts and the cues your child provides to find ways of helping him find his way. And remember, you'll both get better at it as time passes.

6. Children with ASD crave order and structure. In the beginning, it is important to respect this rule and follow it so that your child will become comfortable with who he is and feel safe in the world. Eventually, however, you will have to start breaking the "rules". Show your child that it is o.k. to change the order of things. Nothing bad will happen if the routine is interrupted. Go ahead - wear red underwear instead of white on Monday. Eat something different for breakfast. Drive a different way home from school (I heard you gasp on that one)! Knowing when to break the rules will help to lesson your child's anxiety. It is actually more complicated than that. For a deeper explanation, refer to #9.

7. Your child does not tap his spoon on his plate 4000 times during dinner just to annoy you. I know, it seems like he only does it when you have a headache, your spouse is working late, you forgot to pay the cable bill (making it impossible to watch Thomas the Tank Engine on PBS at the specified time), you've just discovered you are out of the only nutritious food item your child will eat in the evening, and you have PMS (Dads: equate that one to you haven't gotten any in 3 weeks). It's annoying as hell to listen to these repetitive sounds, but believe it or not, they provide comfort to your child. Eventually, you will be able to place your hand gently on his and quietly ask him to stop. And it will work. Hopefully, you won't be on your seventh set of dinnerware by then.

8. Every parent needs to get away. Stay-at-home and home schooling mothers especially need to get away - for a LONG time! An afternoon off every now and then doesn't count. It is impossible to relax and regroup in a few hours. When I say get away, I mean GO FAR ENOUGH AWAY THAT YOU CAN'T COME HOME EASILY. Leave the state for at least 2 nights. Read a book solely for entertainment (preferably NOT one about autism). Go to the movies. Go hiking. Go shopping - for yourself. I highly recommend getting a hot stone massage. Try it once and you'll be hooked. Trust me. Take time to nurture the you that has been forgotten because of your caregiving role. You need to do this. You deserve to do this. You must do this on a regular basis so that you can be the parent you want to be, the one your child deserves. If I hadn't started taking my annual retreat to help me remember who I am, I would now be drinking margaritas for breakfast every morning. Delicious, yes, but probably not a good idea.

9. Some drugs are your friends. Anti-depressants could well be one of your best friends. For you and for your child. It's just a fact that life in the world of autism is filled with anxiety for all of us. It is o.k. to admit that it is more than you can handle alone. Seek counseling. It helps. Take the drugs (the ones prescribed by a doctor, not a dealer). They help also. Do the same for your child. The bumps will be smaller and you'll both be better equipped to handle them if your insides are not tied in knots. Be open to the wide range of pharmaceutical help for your child. Autism is not a behavior problem that can be worked through. As it stands today, it is a life long disability that requires medical monitoring. Suicide rates are high in this group. Take your child's mental and physical health seriously.

10. Your life will not be as you had planned. Get over it. Make a new plan, one that is very flexible.

Bonus: I am a better parent because of autism. I have to thank my friend, Tara, for that one. She helped me to realize how much autism has actually enriched my life with the things I have learned and the people I have met. More importantly, I am now able to love and accept people for who they are, not what I wish they would be. When you get to this point, anything seems possible.