Struggling For Normal

For years, we struggled to bring our daughter up to the level of her peers. It turned out she was playing on a different field entirely.

On November 5, 2019, everything changed for us.

We drove home barely speaking. Absorbing the information. For me it wasn’t a complete surprise. My suspicions had been growing over the previous year. Clancy didn’t dismiss the idea when I brought it up, but she was skeptical. I couldn’t put up a good explanation to the doctor, either. He would run the test, but it was probably not a thing. I’d even managed to talk myself out of it. I’d looked at the 2:00 appointment in Frederick as something to check off our list. We had something more important to attend to that morning: Clancy had miscarried for the second time.

“I’ve diagnosed Lain with Level 2 Autism — medium severity.”

The reading material we were sent home with — or at least the reading material we consumed first — didn’t really help very much. The effect on the family would be significant. This was likely to be at the center of our lives in the forseeable future. More importantly, the future it painted for Lain seemed grim. Marriage? No. Kids? No. Job? Maybe but don’t count on it. Independence? If you work hard enough, maybe. The attempts at compassionate “We know this is hard” landed differently than intended. The more I read, though, the more a disconnect started to form.

“Wait. This isn’t right. This isn’t where she is.”

We had, for a few years at this point, been struggling with two competing thoughts. The first was that even though Lain was behind in virtually every benchmark – especially related to speech and communication – it was a matter of unlocking her cognitive development rather than the lack of it. The second is that the first is exactly what most parents with a child facing a severe developmental disability would say. This was what denial looked like, and more than one person had suggested with varying degrees of urgency that perhaps we were in denial.

We had long had concerns and we had been trying to address them as best we could. She had always been behind the curve but somewhere in her second year there was a sort of tumble where it went from a little behind to undeniable. From that point forward, it would over and over again reach crisis point. But then she would have some tremendous advance. West Virginia has an aggressive Birth-To-Three program that we had taken part in (their position was that we were in denial) and we had tailored her education to her specific needs (her teachers and minders all believed she was very intelligent – “she understands everything” – but it needed to be unlocked). We put her in a Montessori school where she positively excelled doing multiplication before she hit Kindergarten. She had even made friends, which had been a long concern¹.

Then she aged out and we changed schools and it all fell apart. It had taken a lot of effort to find a school that was a good fit for her and we thought we had, but things got off to a bad start with a teacher new to the school who could not manage the classroom. The teacher was fired after two months, then came the instability of not having a teacher. Then another teacher who came in with a very different philosophy as far as classroom rules went. As much as we might have wanted to chalk it all up to that, however, we knew there was more to it. She was wilting.

The good news was that we were finally in a position to act. We had been delayed by our desperate financial position over the previous couple of years. The waiting list on Medicaid was so long that we couldn’t even get a date for testing. The testing also would have been a three hour drive. Paying out of pocket was in the thousands. My in-laws had expressed a willingness to help but they were thinking a couple hundred not a couple thousand. My parents had been helping us some but they were among those that really did not believe there was a problem. All of this is evading responsibility, though, because this was important enough that we should have found the money somehow as we ultimately did.

After reading through everything we had a lot more questions than answers. Was the situation really as dire as presented? If so, where did the “high-functioning” part come in? So we set up a follow-up where he put our mind at ease. He had actually give us information on a wide variety of potential outcomes and we (being who we are) had focused on the hardest cases. He further explained that the type of autism she has most closely resembles what used to be referred to as Aspergers, “though we don’t use that term anymore.” In effect, “Aspergers” has been replaced with “what we used to be called Aspergers” rather than the designation being fully retired. “What we used to call Aspergers” (and variants of that) were all over the space we were newly navigating.

The next step was going to be talking to our families about it. We got a lot of literature on that, too, which also did not really apply to us. The literature was about how to convey to families that she’s the same girl and not to look at her or treat her fundamentally differently than before (beyond things like patience and understand) and not to retreat in fear. We weren’t worried about that. Clancy was worried about her family, who were among the loudest believers that we were in denial and while wonderful people tend towards a certain judginess. She didn’t get an “I told you so” but there was some conspicuous tongue-biting that came with the “We’re glad she’s going to be getting the help that she needs.”

Only her father seemed to understand the gravity of the guilt of not having seen this and acted on this sooner. That was behind a lot of what we were feeling. In Clancy’s case it was because she didn’t see it even as others did. My guilt was precisely because I did see it on some level – I’d been tracking her behavior with autism for a couple of years – but hadn’t treated it with the urgency that it needed. The doctor, bless him, pointed out that we had been treating it in a way. The Birth-to-Three program, the special schools we sent her to, the speech therapy at the public school. The diagnosis just gives us an opportunity to treat it more effectively because it can be approached more holistically and with a better idea of the nature and source of the things that needed to be treated.

It also opened up a world of healthcare to us. West Virginia, it turns out, is incredibly generous when it comes to autism coverage. To the point that I am almost certain that somebody very influential in state government had a child with autism. None of this is to say that it was cheap – we were told at the outset that we were going to have to think of health care in terms of “out of pocket maximums” now – but (with the exception of the diagnosis) it’s all covered.

Of course, that doesn’t matter if you can’t actually find the healthcare. That did turn out to be a problem and delayed us by several months. Federalism struck again². There is also a shortage of providers, so while the recommendation was for 400 hours a year she only got about 100. But it was enough to make a difference. Then Covid hit and it was significantly less and virtual to boot.

My parents responded very casually. Mom is of the mind that everything is overdiagnosed to the point that a lot of labels don’t really have meanings anymore. She’s supportive when we talk about it because she sees the symptoms even if she doesn’t necessarily believe there is a unified underlying cause. Dad’s perspective is that Lain is Lain and this doesn’t change anything about her as far as he’s concerned. He’s confident we will get her whatever help she needs.

One of the things I felt as I was originally absorbing the diagnosis was a feeling it seemed cruel that so many of the unique quirks that identified with our daughter was likely related to the Autism. So there was a feeling (an ill-formed one, to be clear) that all the awesomeness of our little girl rooted back to something wrong with her. It doesn’t take long for it to become clear that the reverse is true: Autism helped make our daughter so awesome.

When she was three we took her to preschool for Halloween one day. She was dressed as a princess. Not exactly her speed, but the dress was given to us (and it’s a very nice one). While we were in line to enter, she burst into tears saying that she didn’t want to be a princess because that would mean that she’s not Lain. She’s not a princess, she’s Lain. She’s not neurotypical, she’s Lain. There are millions of children with autism out there, but there’s only one Lain. It’s a very rudimentry observation, but in the whirlwind of everything happening it took a bit to get to.

As for Lain herself, it doesn’t hold a whole lot of meaning for her at this point. We had a whole speech and discussion planned and she couldn’t have been less interested. She referred to herself as neurodivergent last May and it was the first time she’d ever really expressly mentioned it it outside the context of a conversation specifically about it. Clancy and I have talked about “the label” a fair bit and how do we or don’t want her to be identified by it. The conclusion we came to was the only one we could come to: It will be up to her. Right now it doesn’t take on a whole lot of meaning in her life. Maybe that will change, maybe it won’t.

She’s made a ton of progress over the last four years. A lot of what we sift through now is trying to figure out where the personality ends and where an issue to be addressed is. The biggest example is whether her quiet nature is just a quiet nature (as is the case with her parents) or a product of communication difficulties – or anxieties downstream of them – that will make life more difficult for her? When do we accommodate the behavior of an eccentric personality and do we prepare her for a world that will be less accommodating? We feel confident in her ability to be independent some day and to hold down a job. Whether marriage and kids will be in her future will largely be up to her.

I know this post runs a risk of coming off as making our daughter’s autism all about us, but I chose to write it because we do have a story here even if we are not the star. If you have autism or know somebody who does who would like to tell their story, please contract one of the editors and we would be happy to discuss running it.

1. Her best friend from that school, perhaps also not coincidentally, was also diagnosed later with autism
2. Some of you may recall, but we live on the very tip of our state – we are closer to five state capitals than we are our own state capital – and a lot of health care resources (in addition to general amenities) are out of state. This was especially a problem when we were on Medicaid because no out-of-state providers accept it.