By: Nahoma Presberg, MS BCBA
When I was asked to write to parents about having a child with autism and how it can be a blessing, I was excited. This initially sounded like an easy task. Of course it can be a blessing. Children are always a blessing. Why would a child with autism be any different? But then I thought about it some more. How could I write about an experience that I’ve never had. I’m not a parent of a child with autism. I’m not even a parent. How could I communicate this message that I wholeheartedly believe in without stepping on anyone’s toes or making broad sweeping statements about something that I really know nothing about?
The long and the short of it is, I can’t. What I can do though, is talk about my own experiences. I can talk about working with individuals with autism and their families. I can discuss the life lessons that I have learned from people who think differently from myself. I can talk about how diversity has brought richness to my life, and how neurodiversity is a critical piece of the diversity puzzle.
I want to share with you something that my mom reminded me of years ago when we were in the kitchen preparing dinner. We were talking about jobs, college majors, and what I should do after high school. She told me that I have often talked about wanting to work with the people that most view as “difficult.” I have always been interested by the ways our systems are designed to work for particular kinds of people and those who don’t fit that mold are often labelled as being “lesser” for needing different kinds of support. She was right. This was something I had naturally gravitated to long before I knew what it meant. What I’m trying to get at is that when someone is struggling to fit in, it’s because the system made it that way and not because who they are is “wrong.”
Getting a Diagnosis
Getting a diagnosis can be really scary. Hearing that your child has autims can feel devastating. Individuals who need different support than society is used to providing automatically go through life with new and different challenges, and it can be exhausting to be constantly fighting the system to get you and your child what you both need. Due to this, working with this community has taught me a tremendous amount, both about myself as well as the human experience.
My first piece of advice is to take a step back and pause before reacting. It can be easy to have a strong initial reaction to big news and to let our brains spiral to all of the worst case scenarios. But pause. Look at your child. Remember that he or she is the same amazing, lovable kid that he or she has always been. The only difference is now you have an extra tool to help you understand them and to understand how they might experience the world.
Also, remember that autism means something very different for each person. Saying that your child has an “autism diagnosis” actually means remarkably little. It doesn’t tell you anything about what their skills are or what they can bring to the table. It just means that they fit within a class of people that meet the diagnostic criteria for autism. Autism doesn’t mean that there are suddenly all sorts of things that they can’t do. It just means that there may be ways that you will need to adjust your current way of looking at the world in order to help meet their needs in specific ways.
Become an Advocate for Your Child
Put on your boxing gloves, and get ready to fight. Remember that it’s not your child’s fault that he or she needs support that the world doesn’t know how to give him or her. Advocate for your child. Tune in to what they need, and fight to get them just that. Find a community that can give you emotional support. Seek out parents who are going through similar experiences. They can serve as a critical support team if the system fails you or when you have a really rough day. They can also help you navigate the advocacy work by sharing experiences and learning together.
Don’t forget to give yourself a break. Advocacy can be all consuming, but you can’t pour from an empty cup. Give yourself time and space to just take care of yourself. And do that often. You deserve it.
For more information or to discuss how Attentive Behavior Care can help your child, contact us today.