On the day that a child receives a diagnosis of Autism Spectrum Disorder, many parents launch into an exhaustive search for information, answers and therapies. It seems to be an almost universal experience that Diagnosis Day results in a marathon session of searching keywords online and reading any and every link available.
Then vs. Now
As I read personal stories about this experience, one thing always stands out to me: as the years go by, parents often end up with a profoundly different view of autism than the one they initially held.
With this in mind, I recently took to the Invisible Strings Twitter and Facebook page and asked parents with children on the spectrum a question about this experience. The stated goal was to collect answers and share them with readers of the blog.
The question: if you could go back in time to the day the diagnosis was given, what would you say to yourself?
Here is a sampling of the responses. Due to the volume of replies, I will split this post into multiple parts. (You can click here to check out Part 2.)
Amy: My daughter was diagnosed 3 days after her second birthday. I would tell myself, this is the BEST thing that could have happened for her. It opened the door to therapies, helped us understand her better, and gave us more time to learn about autism and acceptance in general. Now I’m the one pushing people to call Early Intervention or talk to their doctor if they have concerns about their infants and toddlers, because I would never change the timeline of my girl’s diagnosis.
Tia: Presume competence even when the world of medical professionals doesn’t. It gets better- when you step into his world instead of trying to drag him into yours. Recognize what is a skill needed for success in life and what is a quirkiness that makes him unique. Normal is the enemy of creativity and not a goal to strive for. If it feels wrong in your gut- listen, do research, inform yourself. Make his self-esteem and well-being the focus of ANY intervention and be sure anyone who works with him does the same.
Elaine: Off the top of my head… “Don’t Google it.”
Cynthia: Breath. Don’t panic. It’s still him, nothing’s changed within him. Don’t let go. Hold on tight. You’ll get support from all the right places. He has you, and you are not alone.
Stacy: As an educator, with a son who was amazing but struggling in kindergarten, I began to look for answers. Instead I found characteristics of Asperger’s that strongly aligned. For a fee of $1500 I could get a full Ed/psych eval. to tell me what I already knew. Instead I asked the school psych to do the checklist eval for free. His teacher and I saw the same things and he was in the highly likely range for Asperger’s. I cried. I thought of all of the families I knew through education whose children had a diagnosis and I finally “got” it. His childhood was going to be a little different. Then I panicked about the lost years…what interventions had he missed? What did he need? Where to start? In the meantime he found and read the research I printed out…yes at age 5…. He ran to me and said, ” Mom I found your schoolwork! Everything makes sense now, I have Asperger’s! What a relief!” I did not say a word.
There were no words…what 5 yr old can do that? I met with the school team and we worked out a 504 plan for support in trigger areas. He has not been medically diagnosed. We take each day and each school year as it comes. It’s often hard to bite my tongue and not react to adults and kids who are quick to judge…out loud…his quirks. But I remind myself that they are lacking something not him. There are sad days…he has 3 very socially outgoing sisters with busy schedules…when I worry that his experience is different from their experience. There are days when his meltdowns frustrate me and I have no patience. But this is true for any parent. I guess the point is that moment of diagnosis can be described but the diagnosis is always unfolding. It’s just a moment . Life is unpredictable at best.
Clement: It hasn’t been long enough since the diagnosis. I wish that in many years, my answer to this question will be “Don’t worry, it will be all right”. Right now, we’re overcome with suffering, and fear.
Joy: I would tell myself to seek out autistic bloggers earlier! They have made such a huge difference in how I think about my boys autism and have been an invaluable resource to help me understand and find ideas and things to try. I value their insights over any expert, fellow parent, or therapist. I have one aspie 15 dx at 12 and one non speaking more classically autistic 4 dx at 3. I made so many mountains of mistakes with my oldest…I just wish I had found the autistic community earlier 🙁
Lisa: Don’t let this one aspect of his being define him. He will turn Cant’s into Cans…and it will make him your new hero. Truly.
One thing I am learning: we experience our lives as individuals…but we make sense of our experiences as a community. Thanks to all who replied, your insights are very much appreciated.