In my conversations with parents of autistic children, I’m noticing something interesting about the idea of acceptance. Some parents share that they completely accept that their child is autistic, but they go on to search with desperation for a solution to many of the behaviors that come with autism.
I know the feeling of being desperate for things to be other than they are. If we’re honest, many of us could think back to the early days of our children being diagnosed and remember having the same feeling. It goes something like this.
I simply can’t stand that my son is oppositional about every single little thing. This can’t go on. If I do (insert action), will this stop?
My daughter will not leave the house. I can’t stay cooped up in here forever. If I do (insert action), will this change?
My kid is on their iPad all day long. It’s not natural. If I do (insert action), will this stop?
My child has meltdowns over every little change in routine. If I do (insert action), will these stop?
The search for the perfect intervention might flip from the authoritarian (time limits on screen time) to the permissive (permitting the child to do what they want), but the desire behind the intervention is the same. The behavior must change. And fast. Because life can’t go on like this.
What I’m about to tell you might not be very comforting. If you are completely at the edge of your capacity, it might even sound defeatist. But here it is anyway, because it’s the truth and accepting THIS is what accepting autism actually means.
Accepting that your child is autistic means accepting the behaviors that are related to their being autistic. The sensory issues. The social communication challenges. The rigidity. The need for routine. Oppositional defiance. Emotional swings. Selective eating. Intense interests. All of it or some of it. This is YOUR challenge.
You are not really accepting autism if you have a desperate need to change the behaviors that accompany it. What does ‘accepting autism’ even mean if you are heavily invested in eliminating those behaviors that trouble you? Does it mean you accept the idea of autism? The concept of it?
If autism is characterized by sensory issues, challenges with social communication and restrictive patterns of behavior, then accepting autism means accepting how these play out in your child’s life.
It might mean accepting that they don’t want to go out and be around people, even if you do.
It might mean accepting that they need their iPad, favorite TV character or other retreat to regulate, way more than you’re comfortable with.
It might mean accepting that they need everything to be exactly the same because that feels safe even though you like change.
It might mean accepting that your life is not going to go the way you thought it would, because your child has needs different to your own. Different to what society sets as the norm.
Accepting autism is a nice idea in theory. In practice, it means understanding that no matter what you do, what intervention you try, what philosophy you employ, what action you take, your child’s behavior may not change. They may not eat what you want them to eat. They may not play the childhood games that you expect them to play. They may not enjoy the company of others. They may not do many of the ‘typical’ things that you associate with childhood. Ever.
Of course this isn’t to suggest that you do nothing. Many sensory issues can be well managed through the use of accommodations like noise cancelling headphones. Other challenges might be resolved by establishing a clear routine, or alternatively, scrapping all routine. Choosing to homeschool may reduce much of your child’s anxiety. Buying clothes without seams may mean your child is happier in their clothes. If your aim is to better understand your autistic child’s needs and explore ways to creatively meet these, than you might just hit on something that makes a difference.
But you also might not. Your child is autistic and always will be. That means that many of the behaviors that you find worrying may not go away.
Accepting autism means you accept that.
This is what many of us have learned over time. The single biggest intervention that has made a whole world of difference in our family lives is accepting autism as it is and letting go of OUR needs for life to be different than it actually is.
It takes time. It’s not a single moment where you suddenly let go of what you want and welcome what is. It’s a slow movement towards understanding that there is no joy in wishing for a different set of circumstances, of holding out for change. Joy comes when you accept your child for who they are, as they are.
You can’t accept your autistic child without accepting autism.