Last week I mentioned that I got a new diagnosis for one of my kids. Link has autism. Link accepted this information with very little emotional reaction. Which is how he often reacts to new information. Then days or months later he’ll come and ask questions about the thing I’ve told him. So far he hasn’t bothered to ask me anything, which could mean he’s fine with it, or could mean the thoughts are still percolating. I’ve spent the last week or more sorting out my tangle of emotions about this. It is strange to suddenly discover, after eighteen years, that I am the parent of an autistic child.
Things I am feeling:
Guilt: This kid has had full behavioral psych profiles four different times in his life. At each one there were indicators for autism, but the professionals and I said “I don’t think it is.” We said that because when he’s relaxed and happy he’s able to meet eyes and empathize with others. He also doesn’t have some of the stereotypical behaviors like stimming or echolalia. The guilt is because I was satisfied with “we don’t think so” and never requested the extra step to check.
Peace: Because I know that at every single stage of Link’s life I have done everything in my power to help him. I made the best decisions I could based on the information I had at the time. I’ve worked hard for this kid and he has worked hard too. It is possible that an earlier diagnosis would have opened doors and treatment options for him. It is also possible that he is more advanced and socialized now because he was not shunted off into an autism educational track. There is no way for me to know and woulda coulda shoulda is not a useful game to play.
Hopeful: Because this diagnosis opens up access to some transitional programs that are designed to help people with Link’s particular set of challenges. We have a clearer path into independent adulthood than we did a month ago.
Worried: Because I don’t know how the autism label will affect Link’s self conception and I don’t know how the world will perceive and treat him because of it. So far the signs are hopeful. When I told Link he’s high functioning and that autism has a huge range of expression, it seemed to shift his self view. Suddenly instead of being at the low/disabled end of one spectrum, he’s at the high/most-capable end of a different one. I’ve seen the same out in the world. When I tried to describe his challenges before, I had to use a lot of words and often wasn’t able to convey what he needed. But the world is familiar with autism. When I say “he’s autistic” people nod and know how to adjust for him. And they say “He does really well. I can’t even tell.” So maybe my worries are unfounded, but they linger in my head and will for a while.
Tired: Because all the thinking and emotions are exhausting. Also we still have a long road ahead of us to help Link get to an independent adulthood.
Awkward: There is this huge community of autism parents out there and suddenly I have the diagnosis that says I belong. Except I don’t believe that my experience with Link is comparable to the experience of a parent whose child is profoundly autistic and who has had to bend their entire lives around autism management. As with any community there are social rules, controversies, and hot buttons. I don’t know them and so I don’t know if I want to dive in and participate. I don’t need another community. Or maybe I do. Maybe I need friends and guides who have been down the path that I need to walk with Link.
Awkward: (with a side order of embarrassed) My life is full of people who have known Link his whole life. Each time I encounter one I have to decide whether or not to say “Oh by the way, Link is autistic.” I have to decide if saying it is relevant to the person and relationship. I have to evaluate which people will feel hurt/upset if they are not told. I have to consider if having the label will change their interactions with Link in good ways or in unfortunate ways. If I do say something, I then have to watch them react and have emotions about the information. There is also an element of embarrassment here. “Hi my son is autistic, but I’m so clueless I didn’t figure it out until he was eighteen years old.”
Sad: The sadness is not new nor really altered by the diagnosis. It is the same sadness I sometimes feel for my other kids too. I’m sad that things which come easily to other kids are so difficult for mine.
Regret: I do wish we’d had this diagnosis at least a year or two earlier. High school has been really rough on us and we would have approached it differently. The last year has been a crash course in standard educational modes not working and learning to adjust.
Enlightened: When viewed through a lens of “this is autism” many of Link’s quirks begin to make sense. He does not think in words, so when he speaks to us, he is translating. He reports that when he does have thoughts in words it is only because he pictures someone in his head saying the thoughts to him. The fact that he has a specific set of “going out in public” clothes in very bright colors, this is his visual name, a visual signature. There are other things too. I can see why the autism diagnosis is correct.
Quiet: For the past year or more I had this clock ticking in my head, telling me that time was running out. I could see that eighteenth birthday coming. I knew the rules changed afterward. Maybe it was passing that birthday and discovering things on the other side not so different. Maybe it was recognizing that he doesn’t need to graduate from high school on the same schedule as everyone else. Maybe it was Link passing his Eagle Scout board of review. Or maybe it was the new diagnosis. The clock stopped ticking in my head. I’m no longer afraid that I’m running out of time.
So far I’m the one with the most emotions about this. Howard and the other kids found it hopeful/interesting and proceeded with their regular things. I had more sorting to do. Probably because I’m in the middle of an emotional sorting process anyway. Now we see what comes next. I’m hoping for a stable period where we all quietly grow.