Appearing Indistinguishable vs. Being Yourself

Neurodivergent K wrote an interesting post on the tyranny of indistinguishability. I think I have quoted one of this blogger's posts before, on the same topic, but this one again has interesitng points.

Unlike what people believing in the indistinguishability logic assume, it's not like, once you've reached this goal,, you'll always continue to appear indistinguishable. In the preemie sphere, people often talk about catch-up, when in fact a lot of preemies do not just have developmental delays, but developmental differences as well. Same with autistics, but more so: all autistics are not just delayed (in fact, I'd argue against the idea that we're delayed at all), but rather different. Suppose that an autistic, who we shall name Joey, started early Lovaas-style ABA at age three, and, he being a pretty good student, reached the goal of indistinguishability by age six. Now I know that ABA proponents often argue that autism will not go away by age six, and some even argue for ABA for adults. I reckon that if it were truly effective in its aim of indistinguisability, it'd not be needed for life. Anyway, Joey makes for a pretty average-appearing first-grader thanks to his ABA. So the government decides to cut his services (I will get to this later) and he is mainstreamed. Joey performs on grade level in first grade, even though it takes him more effort to complete his schoolwork. Effort doesn't count, and Joey continues his schooling in second and third grade. Once he reaches fourth grade, his teachers and parents notice he is lagging behind. Bring in the ABA therapist again and make him appear indistinguishable again?

Autism parents who advocate lifelong ABA would say yes. I and other autistic advocates say no. After all, as Neurodivergent says, you can appear like a crappy excuse for an NT or you can be the best person you can be. Besides, effort does matter to the autistic. Suppose Joey is restarted in ABA and, through his façade of indistinguishability, slides through middle and high school, or so it appears. His parents don't care about effort, so even though he is increasingly depressed and exhausted, he is pushed until graduation. Then he leaves his parents' home and goes to college, where he crashes and suffers major depression, anxiety and other mental health symptoms. These are so severe that he needs to quit college and ends up on disability.

This story is not mine - I was not involved in Lovaas therapy and was not diagnosed till adulthood. I was, however, similar to Joey and other autistics in that normalcy was expected of me. Effort can't be seen and the people around me likely didn't realize how much it cost me to appear like a lousy NT. I am still trying to find out how to be my best self.

Disability and Double Standards

A few days ago, Ellen of Love That Max wrote a post on double standards in the parenting of special needs children. As an example, she said that she repeats the same phrases over and over again if Max asks her to, but tells Max's sister to stop nagging about the same topic. Max clearly showed that he was learning the skill Ellen tried to teach his sister but not yet him, ie. the knwoledge that the world does not revolve around him. Nonetheless, some commenters got to talking to Ellen like she was indulging on Max and in fact, Nisha, herself a disabled blogger, said Ellen needs to start treating Max like a neurotypcal child.

Nisha has a good point when she says that the world will not indulge on Max when he's big. Max, too, needs to learn the knowledge that the world does not revolve around him. However, as Ellen said in the original post, she did unconsciously teach him this by repeating his preferred phrase with some "stop talkign about that" mixed in and in an irritated tone of voice. Maybe the repeating of the phrase was one of the things which taught Max to pay attention to what was being said, ie. that he needed to stop talking about this.

What annoyed me in Nisha's comment, was the idea that disabled people need to be treated like they aren't disabled. As I said, I totally agree that they need to learn basic lessons of social behavior, but I do not see why this needs to be done the same way that you would teach a neurotypical child. If repeating a phrase helps a neurodiverse child learn, what's wrong with using that phrase in parenting? Ellen might in fact learn to use the phrase in different intonations and variations to teach Max skills like awareness of others.

My point is, when you use different rules for different children (whether they have disabilities or not), you are not necessarily indulging on them. You are just getting on their level and teaching them to move up from there. Expecting a neurodiverse child to behave like a neurotypical, is not realistic. It will not make their neurodiversity go away. In my own case, it just set me up for constant failure.

Of course, you need to have a positive attitude about any child's or adult's abilities. They need to become the best they they can be. That, however, is not the most neurotypical, but the most able. Let's make a comparison: when I still had some sight, one could've said that I needed to be treated like a sighted person and expected to use my vision as much as possible. That is not encouraging me to be the best me I could be. Rather teaching me brailel and cane travel are. Similarly, autistic or otherwise neurodiverse people need to learn some basic skills, but they can be taught these skills in an alternative way. Look at the bigger picture of the knowledge that the world does not revolve around you, rather than at the tiny piece about the use of repetitive phrases.

Autism and Selective Mutism Symptoms

I have not yet finised reding or even scanning Aspergirls, but I know that in it is a part on mutism in (Asperger's) autistics. I also recall that in 2003 or 2004, I was on an autism discussion board and selective mutism was regularly discussed. Not necessairly in the context of autistic kids or adults, but as a similar disorder.

Indeed, many autistics, myself included, have symptoms that could minmic selective mutism, where a person is able to speak in certain situations but not in others. A person cannot technically be diagnosed with both selective mutism and an autistic spectrum disorder, since when a person is autistic, their selective mutism symptoms are chalked up to that.

I do not know what the literature says about this, so I can only speak for myself, but I often get "locked up inside" out of anxiety. For example, in high school, when my tutor raised topics that hit too close to home, I shut down. However, I can also experience mutism when my thoughts get interrupted or I'm overloaded. Then, my brain shuts down in another respect.

So what can parents and teachers do about selective mutism in an autistic? What they did to me, both my parents and my teachers, was force me to speak. I remember one night when I was about sixteen, being made to stay up until I'd told my parents a certain rather personal thing. Let me say, thhis is not the way to go. Anxiety may play a factor in selective mutism symptoms. When you use force, this anxiety will only get worse. Also, if your child does not trust you enough to talk to about personal issues, that's something to work on first.

When the root of the mutism is not anxiety, still, force will not work. When a person is overloaded, the words and actions you use to make them speak, will often only overwhelm them more. Let them quietly think for a bit instead. You might want to ask what the autistic needs - quiet time to process, an alternative communication modality, etc. -, and the person may be able to indicate this in a way even if they don't use words. Sometimes, asking questions will help, at least with me, but sometimes, this will distract me only further from what I wanted to say.

Autism, Special Interests, and Elevated Moods

Many years ago, I read an article on Suite101 or About.com or the like that discussed similarities between Asperger's Syndrome and bipolar disorder. The parent who wrote the article described her son's mood swings from elated to depressed. However, she realized that these mood swings were related to whether the son could engage in some special interest.

I find the same thing happen to me, but in my case, it also ties in with the dissociative or emotion dysregulation symptoms. I find that when I'm in a particular personality state, I engage in a certain special interest a lot more than when I'm in another state. For example, Clarissa is my blogger part, who is behind most of the posts on this blog. Annemiek is my crafter. And I at this point can't think of anyone else.

Getting back to mood swings, I must say that I get very elated when I engage in a particular interest for a certain period of time. I uttered the phrase that I would've been manic if I experienced this (mania) at all. In a way, this is extremely inappropriate and comparable to when a currently mentally healthy person talks about "going all OCD". I in no way want to say I suffer from bipolar (hypo)mania, but these mood swings do get problematic at times.

For example, last night I didn't sleep at all. I spent around $80 on useless online services without even bothering to read the not-so-fine print that clearly said these services would not be working for me. I actually took a PRN Phenergan at 2:00 AM, before I went ont he shopping spree, but swung right through it. Phenergan, for those not familiar with it, is a strong tranquilizer or low-potency neuroleptic. I'm now relatively calm again, so again I in no way mean to compare myself to people who have these experiences for weeks on end, but I do see actually how this could become a problem.

So, should autism parents limit their children's special interests in order to prvent this from happening. I don't think this is universally the case, but parents must teach their children about time and money management. I, having been pretty stingy as a child and teen, never really had to learn about this. I always had enough money on my hands anyway. I actually must say I have no clue about budgeting, and really don't know whether I need to learn it yet. I guess so.