It’s not a secret that I have long had struggles with my middle child. I adore them and love them and worry a lot about whether or not I am doing the right things for them. I tried to get them evaluated by Stanford before we left California and they got a 15 minute yes/no questionnaire that wasn’t at all useful for data on understanding them. I was frankly pissed off. When they enrolled in school here after a month the school asked for permission to refer them for extensive neurological testing because something is going on. We’ve now been on that waiting list for a bit over two years and every sign points to the likelihood of it being another two years before we get answers. But kiddo is rapidly running into puberty when everything is going to get exponentially harder. My window for effecting major change is closing.

Due to all of that I’ve been doing more research. I am heading in the direction of Pathological Demand Avoidance. (Sometimes referred to as Excessive Demand Avoidance because pathological has a bad reputation. I mean… the definition isn’t awful. The word seems appropriate. I get that colloquial associations can be complicated.) It’s not really diagnosed in the states, this is a UK recognized syndrome. But holy shit when you read up on it: https://www.childrenandfamilyhealthdevon.nhs.uk/wp-content/uploads/2020/05/pathological-demand-avoidance.pdf Oh. That’s my baby. I read it and felt strong recognition. I showed it to Noah and he could illustrate each section with repetitive conversations we’ve had in the past. I read it to kiddo and they said, “Oh wow. That sounds like me.” So whether or not we ever get to an official diagnosis we are treating that like Plan A going forward at this stage.

This has some potentially wide ranging implications for the future. How we home educate needs to change pretty broadly because neither of us can handle more years of crying all the time from frustration that they just won’t fucking do as I tell them to do. We need to find new strategies for figuring out how to get stuff done together and separately. And frankly my plan had been to use our investment money till we die and have the will put everything left towards charities. That may… not really be an option if my kids are not going to be 100% able to support themselves and work. I’m still in the preliminary stage of course but I’m looking into stuff written by adults with PDA and mostly they are not independent and able to work.

(Very briefly if you don’t want to read the whole description on that web page: Pathological Demand Avoidance is very related to autism but there is no certainty whether it does or does not fall under the Autism Spectrum Disorder label. It has enough specific quirks around sociability that it seems to be related but not the same. It is a syndrome where anxiety is the dominant part of the difficulty and the stress of being told what to do is so intense one shuts down. By golly if that doesn’t describe my baby. I’ve been saying for years that when they have a list of things to do the most likely way for them to spend the day is staring at a blank wall, numb. Or huge violent tantrums. It’s a wild card sort of option.

I don’t say any of this to complain, criticize, or put them down. I am looking to understand better so I can figure out how I need to change my parenting so my child can have the maximum level of mental health and support available. If this is what is going on I want to see what needs to happen so they can thrive not so I can figure out which levers to pull to make them change. They are who they are. I accept them and love them. But I have clearly not been handling things in the best way and it’s a problem and it needs to change. We both feel bad a lot of the time and I believe with my whole heart it doesn’t need to be that way.

We are both smart. If we understand what direction we need to head in we will figure it out. One of the ways I am that I believe verifies my own autism diagnosis/autistic personality is that I need to have a set of rules/labels that tells me how to behave or I flail and I experience a fair bit of distress. If I can figure out what label is most accurate then I can do research on what works best then I can act it out. Work with what you’ve got and the whole thing goes better.