The first year after the Navigator’s diagnosis was a steep learning curve. We continue to learn today, but not to the intense extent we did in that first year.
We approached our learning primarily in two arenas:
1) learning general knowledge about Autism, and
2) immediate problem-solving specific to the Navigator to help with challenges that were distressing to him.
Both arenas informed the other – we might need to learn general information about autism to do some immediate problem-solving; or the immediate problem-solving might lead to greater understanding of general autism as it manifested in the Navigator.
Over time we were able to merge the two arenas of learning into one global understanding, again specific to the Navigator.
I repeat that because one of the most important lessons we learned during the first year after diagnosis was
“When you’ve met one person with autism, you’ve met one person with autism.” ~ Dr. Stephen Shore
There were many layers that could be examined in this very simple quote. In addition to understanding and respecting the uniqueness of every individual’s experience with autism, because autism was a spectrum disorder there was no no “cookie cutter” way to address the issues that came up.
Through the understanding that there was no one way of dealing with some of the challenges we faced, we frequently created our own problem-solving tools – because no one knew our child like we did.
The second lesson mirrored our own experience in our society, going from the 98% of those not impacted by autism, to the 2% who are.
There were a lot of people who didn’t really know anything about autism, including us at the beginning. As we engaged in our own education, it because very clear that education and awareness, as well as understanding, acceptance, and respect was an enormous need for individuals, communities, school districts, states, and the nation as a whole.
We took the position that every time we got a chance, we would respectfully educate, educate, educate! We found that most people were happy and willing to learn.
But, sadly, yes, there were those who denied the autism diagnosis. For a parent who is working hard to find the road to guide a child into a productive and happy adulthood, it was unbelievable frustrating, hurtful, and disappointing to also have to manage denial, derision, and lack of support.
We learned very quickly that someone else’s denial was really not our problem, it was their problem. We patiently protected our psyches and the Navigator’s, and left the rest to their personal growth, which would happen or it wouldn’t.
By far, the most important lesson we learned from that first year was to take our cues from the Navigator.
The progress of a child with autism is on “autism time” and not a linear process. It was not a two-steps-forward-one-step-back process – more like “whack-a-mole” where one issue might be resolved and then up popped another, seemingly unrelated and yet connected.
We learned from him to slow down, live in our patience, and to take a step back once in a while and see the forward momentum.
And that was truly gratifying.
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