The worst thing about being a parent of a child with autism? You don’t know what the heck you are doing so you read — a lot. You read about toilet training, diets, schools, therapy, playgroups, behavior systems, what works, what doesn’t, how to talk to people about autism, what questions to ask and so much more.
You read and read and read to the point that you are completely convinced that you will go insane. For every source that says to do one thing, you will find an equal amount that say the opposite. Eventually, you will come to the conclusion that the best source is your own child along with tons of trial and error. The day has finally arrived when you accept that no one has written the perfect book on how to raise the perfect child with autism and give you both the perfect life.
You feel a sense of relief at surviving the stages:
- Denial — No, my child does not have autism. Whatever is going on we can fix it.
- Anger — I shouldn’t have gotten them vaccinated. I shouldn’t have gone to that rock concert. I shouldn’t have gone on that trip. I shouldn’t have eaten meat or been a vegetarian or anything else that could possibly have affected my child.
- Negotiation — We can make this work. We’ll try every therapy and medication out there, and we will cure the autism. We will lessen the effect. We will “fill in the blank” with whatever else might possibly work.
- Depression — They said going gluten-free would work, but it’s not working. They said applied behavior analysis would work, but it’s not working. Nothing is working!
- Acceptance — My child is more than “being autistic.” I’m going to give them back their childhood.
You begin to let go of whatever dreams you had before the diagnosis so you can create new dreams. You begin to let go of the craziness of trying to “fix them” into the child you want so they can be the child they want. You feel proud and accomplished, like you are Superparent.
Still, you keep reading. Now, your goal is to help them face the challenges of being a teen, going to high school and prepping for adulthood. In this aspect, we are no different than parents of neurotypical children. Our children will face growing up in this stressful world too, albeit with some different challenges and perspectives.
There are many Facebook groups, message boards, articles and books out there for and by adults with autism who talk about what worked for them, what didn’t, what life was like and continues to be like. When I began looking into these, I thought this was going to be the answer. I could easily guide my two daughters with autism if I could learn from the path these people followed. I could maybe even find a role model that they could question when needed or guide them in a way I never could not having autism myself.
What I found scared me and at times broke me. In complete honesty, there were some things and people who helped, but I also found a great deal of anger and sometimes outright hatred directed at those of us who are neurotypical — particularly parents. Many adults with autism did not like what they perceived as parents making their child’s autism about themselves. They didn’t like parents talking about the “sacrifices” they had to make, they didn’t like us being in their Facebook groups or message boards — even if it was to learn.
I hated the idea that my daughters would grow up to become like these people — that by the time they are adults they must choose sides in a war they were inadvertently born into between neurotypicals and those with autism.
Why is humanity inherently predisposed to finding the differences in people and destroying one another over it? We fight because of skin color, the faith we practice or don’t, the amount of money we make or don’t, the politics we side with, the country we are born in or give our loyalty to and now we’re going to add thinking and behavioral patterns to it?
At this point, the only honest answer I can find to all my questions is to love my daughters. I encourage all parents of children with autism to just love your children, focus on the present and stop worrying about the future.
I plan on writing a journal for both my daughters so that when they’re old enough, they will know why I made certain choices, what I did when I realized the choices I made were wrong and how it felt to be their mom — not the mother of children with autism, but their mom.
Someday, if they have people trying to convince them that I don’t understand them, I can honestly tell them that is true. I can’t understand them, just like they can’t understand what it was like to be me. It’s not important whether or not I understand them, just that I loved them; I will never stop loving them, and no ideological war can change that.