Finding freedom

Embracing of what I used to find unacceptable

image © the author

It's been a long time since I have written anything. In the months since I've posted, life has changed a lot for us. A few days after I wrote about my daughter's experience with burnout, school started. My daughter went to the first day of second grade, and wouldn't go back. That one day of school worsened the symptoms of burnout that we had been seeing - she spent weeks in bed, playing Roblox and Minecraft, and watching YouTube videos of other people playing Roblox and Minecraft. She became enraged at the smallest things, continued to be unable to meet her basic needs (bathing, teeth brushing, eating). It was scary. The medical system was not helpful. I knew this to be true, but I was reminded of the fact that sometimes when doctors don't know what's happening, they might ignore it, or misidentify it with an unhelpful label. They try to put each patient into one of the known diagnostic boxes, prescribe the known treatment, and move on. What happens when the known treatments don't work, or when the symptoms lie outside the descriptions of the DSM?

There are many parents, and a number of advocates, and a smaller number of health care professionals, who are trying provide help and resources for families with experiences like ours. We were lucky to find a neuropsychologist locally who has a deep understanding of how autism presents in girls, and who is familiar with PDA. We now have a diagnosis - autism, PDA, and autistic burnout. It's what we suspected, but somehow having the diagnosis feels validating. Despite all of the problems with how we diagnose mental health in the US and how many disagreements I have with the system, a diagnosis still reassures us that we're not just imagining things, that we're not just "doing it wrong", and that we really do need to take a different approach to parenting to meet our daughter's needs and help her thrive. It has also helped us connect with other people who have shared experiences and start to build an understanding community for our daughter.

A big part of me wishes the diagnosis wasn't necessary, that I didn't feel the need to seek it for myself or my daughter, and that the systems of our society didn't require kids who respond to the world differently to be labeled. But when our psychiatrist suggested hospitalization as a potential next step for us to consider, and when the school suggested they would have to notify the county if our daughter didn't start attending more regularly (despite her clear disability), it became obvious that we had to have a diagnosis from a provider who understood what was happening simply to defend our ability to parent our daughter in the way she needs. It also became clear that we needed to unenroll from school and learn about homeschooling.

For for the past few months, PDA and "unschooling" (a term I put in quotes because I found it so odd when I came across it) have been my special interests and I have gone deep into learning and connecting with other parents. The good news is there are some amazing communities of parents and other caregivers who are eager to connect and share what they have learned and what works for them. For me, the most important aspect of healing has been acceptance of how things are, which includes a rejection of the pathologization that our society is so eager to apply. I thought I had already done this when I went through my diagnostic process and the connections I made with the adult autistic community. What my experience with my daughter has shown me is how much more work I have to do and how inured our society is with the tendency to pathologize, label, isolate, and try to "fix" people who resist, or reject, or illustrate flaws with the status quo. And when people resist more, or move into advocacy, we label them as fringe weird people. When I write this, I'm referring to myself - I pathologized, I labeled, I thought that people who questioned our accepted approaches were the kind of people I should try to avoid. Even though I myself have always operated somewhat outside of conventional social norms, I've also generally adhered to the more foundational societal norms (for example, kids need to go to school, even if they don't like it, because some horrible thing will probably happen if they don't). What I'm realizing now is that I have become one of the people I used to stigmatize!

Acknowledging my own tendencies to comply, seeing how much I am influenced by the messages that surround me, and accepting that what our family needs, means that we are taking what looks like a radically different approach to living our lives. This has been a level of acceptance that I have never experienced or even contemplated before. And, it's wonderful. The biggest change I've experienced in the past few months has been my change in perspective. My acceptance of things that I thought were unacceptable. My embracing of ideas that I used to find scary or unimaginable. As I have been going on this emotional and philosophical journey, our daughter has been showing so many signs that she will be just fine. She needs time to recover, and we all need time to learn how to shape our lives so that burnout doesn't become a regularly occurring feature. And, we have plenty of time. That has been a revelation for me. Despite all the rush, and stress, and frenzy of the world, we actually have plenty of time.

Some of the perspective shifts that I have had since September: Not all kids need to learn how to read (or memorize their times tables) by a particular age; school (or even teaching) is not required for kids to learn; every kid has a different way of learning, growing, and being, and it's OK to let our kid explore the world in a way that feels safe and manageable for them. In other words, nothing terrible will happen if our daughter isn't enrolled in a conventional school, taking standardized tests, and "keeping up" with the standards that attempt to measure every kid as if they are not all unique individuals. My first reaction when our daughter went into burnout (and when it became clear she would be there for a while) was to think that this was a terrible thing. But now I'm looking at it so differently - I am grateful for the awakening it has given me. It fees liberating for our whole family to chart our own path. And I am so excited for all the exploration and adventures that my daughter will experience on her journey.