Autism: The next doorway — Pt. 2

The day after the diagnosis: what I know to be true (so far) about ASD

It’s been a day since my son was diagnosed with Autism Spectrum Disorder. Thoughts are swarming my head like news reporters at the end of a major speech. The main question is: what will happen next? Sometimes I wonder about what to feed him for dinner. Sometimes I wonder what will happen to him if I die. It’s hard to say what Frank’s future will be. Frank’s ASD seems to be relatively mild. The doctor and social worker who met with us said that they don’t think he will need to live with us forever. He will probably be able to find and keep a job he loves. Who knows? Maybe he will start a family. I can’t let my mind wander too far into the good or bad things that might happen in Frank’s life. Instead, I need to focus on what I know for sure.

Frank has ASD.

  • He received a medical diagnosis from one of a renowned behavioral pediatrician, who studied him and questioned Patrick and I for several hours
  • ASD is a spectrum disorder, meaning there is a wide range of intensity of symptoms. Frank is on the milder side
  • He most likely didn’t get it from a vaccine or from watching TV
  • He looks like “everyone else” (which can make it hard when I’m dealing with one of his episodes in public and people think he’s simply unruly or I’m a poor parent)
  • He has some incredible gifts and some intense challenges that are common among people who share his diagnosis
  • He probably won’t grow out of it

There are a ton of resources to help us manage Frank’s ASD

  • We are blessed to live in one of the best areas for medicine in the world. There are many medical professionals who specialize in treating ASD right in our back yard. As of now he doesn’t need medication, but if he ever does, we can find him the right treatment. Our next step is to speak with a dietician to see how we can choose better foods for Frank and everyone else in our family.
  • Our school system is one of the best in the country. Several members of the school community worked to develop Frank’s Individualized Education Plan (IEP) which helps Frank’s teachers to understand Frank’s learning needs and implement the accommodations he needs to succeed in every class. They understand that Frank does not have any cognitive issues, but that he has social and behavioral deficits. His new teachers have been outstanding to work with. They keep me informed of any concerns and even celebrate Frank’s good days with me.
  • The social worker we met with today gave me a long list of organizations who will have resources to help us help Frank. There are advocacy groups, social skills clubs…even a company who sells locks and alarms specifically for families who have brilliant, but far-too-bold escape artists, like Frank.
  • Local recreation organizations and even our gym may offer him some athletic and artistic outlets. The doctor particularly recommended swimming, gymnastics, and martial arts because they offer an independent, mindful outlet for his seemingly boundless energy.
  • Our friends and family have offered us a tremendous amount of support throughout the past three years as we have tried to solve the mystery that is Frank. Thanks to all of them for their advice, for showering Frank with love, and for listening to us ramble “What if it’s autism?” over and over again. Now that we know that it is, we need you even more.

God has got this

  • I gave Frank over to God on his Baptism day, September 9th, 2012. At that time, I was teaching students with behavior problems, just as my grandfather Frank had done. I was gifted with nearly infinite patience and the requisite sense of humor to go along with it. I strive to be “gentle and kind” at all times, as well. God gave me Frank because he knew I could handle a child with ASD and the extreme frustration that comes with it.
  • Although Frank has run into some babysitters, teachers and coaches who struggled to understand him, some people just “get” Frank, like me. No matter where he goes, he seems to always have at least one person on his side. Like I said, they’re his guardian angels. I think the doctor and social worker who tested him met the criteria. They didn’t freak out about him rolling all over the floor. They laughed at his narration of the shapes they had him draw and awed over the “w” he made out of small wooden cubes. He wasn’t a clinical specimen. He wasn’t a nuisance. He was Frank.

Now the task of research lays before me so that I can find out more truths about raising an autistic child. There are parents to interview, books to read, groups to attend, and many, many prayers to be said.

Click here to read part 1.

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Robyn Barberry

Robyn Barberry

Robyn Barberry is married to her high school sweetheart, Patrick. They are raising four imaginative and adventurous children, one of whom has autism. Robyn teaches art and language arts at St. Joan of Arc in Aberdeen, where she worships with her family. Robyn earned an MFA in creative nonfiction from Goucher College in 2011 and she has been blogging for the Catholic Review since 2012. If she could have dinner with any living person, it would be Pope Francis.