This week’s interview comes from someone who, due to the abuse suffered during childhood, would rather remain anonymous. You’ll learn about why ABA is rejected by the autistic community and hear more about the reason why this person does not like person first language. With that said, I will just go into the interview.
1) At what age were you diagnosed with autism and how did the diagnosis come about? Six and I’m not totally sure, my school probably mentioned it to my parents.
2) Do you feel that your parents support/supported your needs well? Not in the least. My father is a functioning alcoholic and my mother abused me psychologically and emotionally for most of my life, the happiest I’ve ever seen her was actually when I had a knife to my own throat.
3) I’ve heard some people say we should refer to you as a person first (a person with autism) but others feel that it’s okay to say someone is an autistic person. What do you feel is the correct way to talk about someone having autism? Person first language has been rejected by almost every group that it’s been applied to. First and foremost it’s awkward, in English positive and neutral descriptors almost always precede nouns while negative ones typically follow, by changing this in using person first language one calls attention to the descriptor on top of implying a sort of marred identity and on top of all that it falsely suggests that one can somehow separate the descriptor from the individual, a false and insulting premise. On top of all that it suggest that the person using it has to or they will somehow forget that they are dealing with another human being.
4) Do you feel overwhelmed by environmental stimuli? If so, can you explain how it feels (for you) to have a strong reaction to sensory stimuli? Yes, sometimes. Generally I try to control my senses in order to avoid it, I mostly do that through avoiding things that I know will be problematic but when that isn’t possible I find ways to limit or override that sense (e.g. headphones), so it’s barely noticeable and when it is then it’s little more than an annoyance. When I do get overwhelmed… it’s kind of hard to explain. It’s like everything is too much and not enough at the same time, my senses get far stronger but it’s like there’s something between my mind and everything else. Thankfully I learned to delay a meltdown when I was a kid, when that happens I kind off just turn off and get sort of robotic while trying to get to somewhere that I feel safe enough to have the meltdown (normally that means limiting interaction as much as possible for hours, until everybody else is asleep).
5) Are there ways in which you feel limited by your condition? If so, how? No, there’s no differentiation between “my condition” and myself. That being said I do know where I have issues and that some of those issues are caused by other things (I have some serious psychological trauma, it’s to be expected).
- I have no idea what to do in social situations I haven’t encountered or at least that I have no real reference point. Luckily I’m good in most situations, unfortunately the ones I haven’t encountered all have to do with human connection. I’ve never really been close, like having somebody who I can really open up to, with anybody before so I’m not really sure what to do there and I also don’t really have any experience romantically, I have enough theoretical knowledge that I can consistently give good relationship advice I just don’t really know how to apply it.
- My sensory issues make it hard or impossible for me to do certain things. A lot of my friends go to conventions regularly, they always invite me and try to get me to go and I always say no (usually citing not wanting to spend the money and not really liking them) but I kind of want to go at least once but I know there would be too many people and I couldn’t handle it. I also feel pain differently than everybody else, that usually doesn’t mean much of anything but can lead to my getting weird looks (being able to shrug off a dislocated limb and have full functionality within a few days while being terrified of needles and pained by a lot of contact that others consider normal is strange).
- I act strangely when self-esteem and ego matter. At times I can come off as having a massive ego, this is because I actually don’t care what happens to me at the moment and thus take a big risk or because confidence is useful for whatever I’m trying to do (turns out people listen to you when you act cocksure), and others like I have barely any self-esteem, this is usually when I need to put myself first (e.g. I don’t really ask people out because I feel like I don’t deserve anybody and shouldn’t make somebody have to deal with me romantically).
- I have a very limited emotional range (by Ekman’s theory of basic emotions I have 4.5/6: anger, disgust, fear, sadness, and to some degree surprise). I’m good at faking it and I mostly rely on emotional contagion to serve as a guide (basically I feel what those around me do and then fake the NT expression of whatever complex emotion the mix of basic emotions that I’m feeling is) but when I’m alone I’m either dead inside or a mix of rage and sorrow, thankfully I haven’t had a proper depressive episode in some time and I’ve found somebody that makes me genuinely happy (we aren’t dating but we sort of are, it’s enough for now but I want more eventually).
6) How can having autism have an impact on someone’s behavior? I’m not really sure, I mean there are things that are more common for us but I can’t tell you if it’s an autistic thing or just a result of common life experience.
7) Follow-up: How can parents, teachers, etc., help someone with autism to make it through a situation that’s creating frustration for them? If they know what causes problems for the individual and what things they like then acting based on that works when they can’t communicate (lack of speech is not lack of communication, there are so many other forms, I’m talking about mid-meltdown here). Otherwise the best thing to do is to ask them and not presume anything.
8) What is the most annoying thing anyone has ever said to you regarding autism (and why did it annoy you)? Either that because of how I present myself I am somehow not really autistic/less autistic than somebody else or that my experiences weren’t what they were (most of my trauma is not actually from my mother but from ABA). To the first one, functioning labels are not only inaccurate (as an individual shifts radically in even a single dimension over time and individuals are all over the place if you look at every aspect of them) but incorrect, hence them being replaced in the DSM, and that those who can communicate (or at least can easily be understood when we do) are the best resource for understanding those who can’t. To the second, there are no words or at least no civil ones.
9) Do you think there is a cure for autism? More importantly, would you want to be cured of autism? Feel free to elaborate. I’m going to preface this by saying that I am fully against looking for a “cure” as well as being against the development of prenatal testing (due to being fully cognizant of the genocidal, in the most literal sense of the term, purge that would follow) but that I am for development of services and therapies to help with quality of life (with the caveat of proper scientific procedure being used). Yes, though those who seek one are rarely willing to admit that we have found the only “cure’ (although careful examination of the language of many of the groups seeking one make it clear that they are fully aware and support its use), death. Autism is inseparable from the person ergo any “cure” must by its very nature also do away with that person, even in the eventuality where another means was found it would still cause the autistic person to cease to exist you would simply be replacing them with an NT that looked the same.
10) If you could tell society anything, what would you want to say (try to keep it PG)? That as much as many don’t want to admit it we’re human. We’re as emotional and as deserving of life as everybody else but because we are different, because we are in the minority we are considered to be other and so far below the notice of people that our simply asking to not be killed is controversial.
The Follow-up Questions:
1) Did anyone intervene when you lived in an abusive household or did you continue to have to deal with that situation into adulthood? No, nobody outside the internet even knows. My mom is a classic manipulative narcissist, nobody who meets her would ever believe that she was capable of such things. I’m actually still dealing with it and will for the foreseeable future (I’m probably going to be staying in the area and living in the house after I graduate this year).
2) Do you think that your home situation had an impact on your overall development, or do you feel that you would be the person you are today even without negative influences? Without a doubt, it’s hard for something like that to not have an effect on a person. I’m not totally sure what it changed, there’s no real way to know after all, aside from some things that are common amongst those with similar experiences.
3) Can you tell me more about how ABA had an impact on your life? What did you dislike about it, etc.? This post kind of does a lot to sum it up.
In case you’re not on Reddit, the post says the following:
There wasn’t anything good, not even when I was done with it. I rationalized it by thinking that I deserved what was being done to me so when it ended I didn’t know what was going on anymore, I hadn’t changed recently so there was no reason for it to stop. I had two choices, assume that there was no reason for it, that I had been abused for years for nothing, or think that whatever made me deserve it was so deeply embedded that they had given up. The only reason that I didn’t have a total mental break (instead I was just severely depressed with suicidal episodes) was because my best friend was trying to get in with a group of bullies and was continuing the abuse, he gave me the stability to deal with it as much as I could, by being absolutely horrible to me he probably saved my life and I would thank him for it if not for the fact that he has no idea what I went through. I wasn’t even ten and I had so thoroughly internalized the abuse that I became suicidal when it was over because I thought I deserved it, after three years of abuse (and I knew at my core that it was abuse, I just couldn’t rationalize anybody doing anything like that to a kid and not being reviled for it) I came to expect it and practically desire it. The entire time, from the first day, I wanted out and as soon as I was my world fell apart. They did things by the book for the most part, they actually went easier on me then they were supposed to and I can’t even begin to imagine how horrifying it was for those who weren’t allowed to take it slowly. Funny thing is that I never really protested, I would say that I didn’t want to go or that I didn’t want to do something but when I was pressed I never told the truth, I knew that if anybody believed me then they would be horrified with themselves (everybody involved was a good person outside of this and they really wanted to help), but everyone still insisted that it was for the best, that it was being done to help me, that they were making me better. They were defending their actions without ever having them called out, subconsciously they knew that what was happening was wrong. My parents, my teachers, my therapists all knew that it shouldn’t but happening but they couldn’t recognize it consciously because they couldn’t deal with the guilt, at the very least my parents still can’t (I’m not sure about my dad, he distanced himself from me more a little while after it started, after the first time he heard me saying that I didn’t want to continue). All that they did was traumatize me, take away my stims, and force me to wall off what made me me but they took credit for all the work I put in to get out of it, they took credit for all the hours I put in watching everybody else and trying to figure out how to act to seem like them, all the hours that I spent perfecting the act so that I was unshakable. Almost everything in my life since I perfected my act, since I was six has been carefully calculated to make it easy to seem like everybody else. It’s all been an act so that I could hide my true self from the world and in the process I lost track of where I hide my real face because I couldn’t ever let my guard down even when I was alone because I couldn’t be sure that it wouldn’t start again. Nothing in my life is entirely real. The emotions I decide to fake (even if I’m actually feeling it I’m still faking the expression, I couldn’t be read otherwise), what I say, what I do, who I’m friends with. All of it is planned as carefully as I can to keep the act as effortless as possible, and I’ve gotten good at making these sorts of choices on the spot so good that there isn’t a perceptible delay. There are few things that I want more than a chance to stop, to try to figure out who I am but I’m terrified. I’m terrified that once I let the act slip I won’t be able to get it back, I’m terrified that somebody will find out and the abuse will start again, I’m terrified that there’s nothing there aside from the pain and rage. I’ve been on edge since I saw this question, since it was first posted, because I’ve felt that I needed to respond. There’s a good reason why those that have been through ABA are so strongly against it. I’ve been shaken but I am not broken, I will not break. If I had the choice then I would gladly go through all that again so that another wouldn’t, I would make that choice again and again because I know that I can take it, because if I can take what I went through and use it to make even one life better then it was all worth it, because I can’t be weak anymore, because I need to turn this into strength, because I need it to have been for something, because I haven’t felt truly human in so long, because I need [to know] there is still hope, because I need to know that there’s at least one person who’s better off for my being in their life for even a moment.**
**I added the emphasis within the quote to highlight parts that might particularly interest those reading this entry.
If you’ve considered using Applied Behavioral Analysis (ABA) therapy on your child, please consider this person’s response into your decision-making process. Many of the people I’ve spoken to through the Autism subreddit adamantly oppose ABA, and they could not speak for themselves as children, but now that they have entered adulthood and found the computer, their voices are heard loud and clear (at least by me). ABA is rejected by most of the autistic community because it feels abusive and like people keep trying to take their personalities away.
While there are plus sides to ABA (changed behaviors, etc.), I know that we’ve changed a lot in our own child just by consistently reinforcing the positive. I don’t want to change his personality, because we love him as he is and want him to know that.
Is ABA worth it? I guess that’s up to you.
Your Turn to Comment:
What do you think about ABA Therapy?