My son was diagnosed with autism when he was three years old. The diagnosis didn’t come as a surprise… Julian is completely nonverbal.
I have to admit, hearing the diagnosis for the first time stung a little. But I took it in stride, knowing that it didn’t change how awesome Julian was. It only changed what services I could get him.
Toward the end of the appointment, I asked the doctor, “What’s next? Where do we go from here?” He told me to look in my folder for a list of ABA therapy providers. Julian would need to start as soon as possible.
I immediately felt a sense of panic. I didn’t show it, but my “mom shield” went into full effect. You know that feeling… the urge to protect your child from anything harmful.
I’ve heard stories about ABA therapy… forcing children to do things they find scary or uncomfortable, with the goal of desensitizing them. I’ve seen videos of children strapped into chairs so they couldn’t wander… and therapists ignoring their cries.
Yes, I want Julian to make developmental gains and reach his full potential. And I’d love to hear him speak. But I know those things won’t happen if he doesn’t feel safe.
My family has worked very hard to make sure he feels supported and loved in a world that is often scary to him. I won’t sacrifice his emotional health in order to reach those goals.
Fast forward – Julian has been receiving ABA therapy for 8 months now. After doing a bit of research on providers in my area, I finally found one I was comfortable with.
ABA is nothing like I imagined. In fact, it’s better than every other therapy he’s had before. (We’ve been through a lot.) I not only interact with his therapist, I work with a whole team of professionals who are interested in Julian’s well-being.
They ask me what my goals are… for Julian and our family as a whole. They help me find resources. They even helped me get ABA services for Julian’s twin brother who isn’t yet diagnosed.
The therapy isn’t cold or forced. It’s playful and developmentally appropriate for their age and ability levels. We work on skills and tasks that are specific to our family, such as taking baths and going on outings.
While Julian works on sounds and sorting, his brother Dominic works on letters and vocabulary. And both of them work on life skills, impulse control, and safety while out in public.
I’m able to plan trips that I wouldn’t normally be able to handle by myself. We’ve been to the store, the beach, and even the aquarium. My boys have had life experiences that I couldn’t have provided on my own.
If you’re a parent who’s new to autism, here are a few tips to make sure you’re child gets the best therapy possible:
1. Do your research.
Contact the Autism Society of America (ASA). I found my local chapter online. They know the ins-and-outs of autism services in your area. (You can find your local chapter here.) Also, ask around on local Autism Facebook groups. Other parents can give you first-hand accounts of their experiences.
Before you make any decisions, interview the provider to get a good sense of the company’s policies and methods. Get a “feel” of the organization. Do they welcome your questions? Do they take the time to discuss your goals? Do they encourage you to call them with any of your concerns?
2. Speak up!
You are in charge of your child’s therapy. Make a list of your goals and your concerns, and share them with the provider. Let them know what you will and will not allow.
For me, it was important that the sessions were developmentally appropriate. My children were 3 years old when they started. They should not be expected to sit at a table and “work.” I also wanted to protect their emotional well-being at all costs. Children don’t learn well when they are in distress.
If your child is in a center-based setting, make sure you can drop in and observe whenever you want. This is your child. You can always change therapists or providers if you don’t feel comfortable.
3. Communication is key.
Not every session is perfect. Neither is every therapist. Make sure you keep the lines of communication open with every person involved with your child’s case.
When something doesn’t feel right, let them know. There may be a “method to to their madness” that you don’t understand. Or you may be able to offer the therapist some tips to help the sessions run more smoothly.
Dominic and Julian’s sessions are done at home with me. But I also keep in contact with the therapists and their supervisors at least once a week to address their progress, as well as any concerns I may have.
Remember, you run the show. You are the boss. It’s your job to advocate for your little one. Any respectable ABA provider will welcome your input and work to support your decisions.
It’s not easy trusting someone else with the emotional health of your child. It’s even harder when your child can’t express themselves in a way that you can understand.
But the majority of therapists feel the same way you do… They want your child to succeed. They want to help support your child’s, as well as your family’s goals.
I’ve been extremely lucky to find amazing therapists. What are your experiences? What advice can you give to a parent who’s new to autism? I’d love to hear your thoughts.