Autism can be so unpredictable. There's no cure, there's not one widely agreed upon cause, and no two people with autism are exactly the same. I remember when my daughter was first diagnosed at 3 years old, I asked questions like "will she ever be fully independent? will she go to college? will she marry? will she drive a car?" Of course, no doctor or therapist could answer that with certainty- and I asked them all! It's funny to look back at that time and think about how important those things were to me then, and to realize how very unimportant they are to me today.
There are just too many things about autism that are variable and uncertain. However, here are five things I know to be true about autism:
1. We are not alone: Raising a child with autism has brought some amazing people into my life. I've met some incredible parents in clinic waiting rooms, online forums, and doctors' offices. It's been incredibly powerful and comforting to be able to relate to other families walking down this path and to know that we are not the only ones.
2. It isn't going away, but that doesn't make it a death sentence: In the preschool years I certainly hoped that with enough therapy or the right diet/supplements, she'd "catch up" to her peers by kindergarten. Not only did that not happen by Kindergarten, but I've come to accept that it just won't ever happen, and that's okay. In fact, as more time passes, the chasm between her and her peers widens. Yes, it's a lifelong disability and there is no cure, but there is still happiness, fun, and love here. There are ways to try to minimize some symptoms that might hinder a person's ability to enjoy life, feel comfortable, and thrive with therapies, medications, supplements, etc. It is possible to find happiness whether your child's symptoms improve or not.
3. She will make friends: They may not be the neurotypical peers that I'd always hoped would come around and reach out with compassion and an open mind (I'm not ruling out that possibility!), but she will have peers and relationships with others.
4. I feel like a better person because my daughter has autism: All my priorities have changed. I don't sweat the small stuff, I find pleasure in much simpler things, and I've learned to seek out quality over quantity in all things.
5. Autism can be very fluid: Symptoms relating to her autism can come and go. Right around the time I think I can't take another second of a particular obsessive behavior, she tends to pick up a new one that makes me miss the old one! Life with autism is never boring and always changing. My daughter's behavior and functioning tends to vary depending on the surroundings and her comfort level. I always try to meet her where she is, but presume competence and push her to be the best she can be.
Just as our autism is fluid, so too can be my feelings and reactions. I have good days and not-so-good days, just like my daughter. As I go along, I keep learning more and more about life with autism, but these 5 things remain constant.
Dani Gillman is Cofounder and Head of Marketing at Birdhouse– a Detroit-based startup empowering parents raising children with special needs to learn more about their children through a behavior journaling app for iPhone, Android and the web. She’s also mom to a 11-year-old daughter (who happens to have autism) and a 2 year-old-son (who doesn’t appreciate naps as much as his mother does).