Allison Behymer’s two youngest children are on the autism spectrum. Her daughter Charlee is age seven, her son Liam is age six; both were diagnosed with autism at the age of two. The pediatrician who provided the diagnosis told Allison that her children would remain non-verbal throughout their life and would never have the ability to walk or care for themselves and would not, therefore, be “viable humans”.
Allison rejected this grim outlook and made finding acceptance-based supports and therapies priority number one.
I communicated with Allison about her initial anger, the positive experiences that followed, and the therapies she found to be most helpful. And, my personal favorite: she also describes the message she hand-delivered to the pediatrician at a later time.
Can you describe your initial reaction to hearing the autism diagnosis?
Walking out of Department of Developmental and Behavioral Pediatrics at Cincinnati Childrens Hospital was a haze, not even sure how I got to my van. Charlee is the older of the two, so she was the first diagnosed. My now ex husband didn’t come to the appointment. I made it to the big bridge going over the Ohio River before what the doctor said hit me like a brick and I had to pull over. I cried harder than I ever had…until Liam was diagnosed.
I called my sister from the side of that bridge and we both cried. I told her I was lost. Then she said something to me that I swear to this day was the best thing she could have said : “Give up if you want to….but I know you won’t…because you’re the strongest woman I know and an amazing mother, and that doctor is wrong! We will read books, go to conferences, scour the internet, but I promise…we will find Charlee…and she will be amazing no matter what!” Then, I instantaneously became angry…at the doctor, at myself for wanting to give up, at my husband for not caring enough to be there.
That anger stayed with me for awhile….but it was the driving force behind educating myself, finding the best therapists, learning their therapies so I could give them extra therapy time. My four year old daughter began learning and teaching all of us sign language. I read many good and bad Autism books. I read up on all new practices and talked thoroughly with their therapists about everything. Charlee began speaking when she was four, Liam about three and a half. Once they started to speak, I knew we were doing something right. By the time they began speaking my husband and I divorced. I am with a wonderful man now who has been amazing for me and the kiddos for the last three years.
What are some of the therapies and supports that you’ve found to be most helpful?
For Liam and Charlee I chose the “pick and choose method”. I thoroughly educated myself and their siblings with the help of three fantastic therapists we had for occupational, speech, and physical therapy. Both of my kiddos were initially non verbal, self injurious, etc. We began PECS (Picture Exchange Communication System), sign language, floortime, lots of sensory play, and a reward system that began with instantaneous rewards and then began moving to rewards by five minute increments.
We allowed all stimming as long as it wasn’t dangerous, and allowed all scripting as they became verbal. They are both mainstreamed, extremely verbal, empathetic, extremely intelligent, and very loving. They have IEPs that are in place to allow them to become even more amazing! We continue to allow stimming, we script through hard situations and bad behavior. But…we NEVER use punishment, forced physical contact, forced eye contact, etc…and we NEVER stop thinking of them as human beings that need love and respect; these rules are in place at their school as well.
If you could go back to the day the diagnosis was given, what would you say to yourself?
I would tell myself to breathe. Nobody knows how strong they really are until life puts them to the test…when my option was to sink or swim…I chose to swim 🙂 My anger hasn’t been my driving force for a few years now, but when I look at my kiddos and see where they are now compared to where we started, its an affirmation that they can and will do anything they choose. My driving force is them now…they have fought valiantly to be as amazing as they can be…and I think they are pretty amazing…quirks and all!
My understanding is that, years later, you paid a visit to the doctor who had first diagnosed Liam and Charlee. Can you describe that moment?
The developmental pediatrician that diagnosed them at age two said, “They will never talk, walk, be able to take care of themselves. I am sorry to say that neither of them will ever be viable human beings.” Let’s just say that was my driving force. When Liam was five we made a video for that doctor and hand delivered it to her.
May I ask what was on the video?
It was a video of Liam and Charlee singing songs, reciting their ABCs, interacting with other kids at the integrated school they were in at the time, hugging and kissing their siblings, drawing pictures, stacking blocks…etc.
How did the doctor react?
Liam handed her the video and said, “Here is a video of how awesome me and my sister are.” I looked at her, handed her back her hand written BS diagnosis of infantile low-functioning Autism and recited the words she said to me three years before. I politely pointed out that saying that was dangerous and may cause parents to give up. She stood there with her mouth hanging wide open. Liam and Charlee both waved and said goodbye as I turned on my heel and walked out of her office.
Related posts: volunteering on the spectrum; autism and depression; Brent White on disability labels and adult autism; and in Part 1 and Part 2 of a recent series, parents discuss diagnosis day. And find ongoing spectrum discussions on the Invisible Strings Twitter and Facebook page.