I got treated fully and consistently like a real person throughout the entire conference I just went to last week [note: “conference” is not the same as “MIT”, this was not at MIT], to a degree that I am still stunned about. But it was all done in a very natural way. There was just this background knowledge that people are people.
And one thing I learned from that is that not everything that I’ve attributed, and seen others attribute, to autism, necessarily is. Because in being treated like a person, actively rather than passively, by the majority of a large group of people around me, I discovered aspects of myself that I didn’t know existed, and whose non-existence I’d previously ascribed to being autistic.
Which got me to wondering something.
How many of the emotional and social problems autistic people have are actually related to being autistic?
I’d be willing to bet it’s less than it looks like.
I have a depth of emotion and social relatedness that I did not know existed until roughly last week. It has totally changed the way I perceive myself, and it has totally changed the way I perceive other people. It’s very difficult to perceive certain aspects of people in general if you don’t know they exist, and if the reason you don’t know they exist is because you’ve basically blocked them out of awareness in order to survive.
I was an incredibly emotionally sensitive and empathetic kid — like a lot of autistic people I’ve talked to, actually. But as an autistic kid I was also a walking target the moment I met other kids. Autistic kids, for some reason, seem to get more than the usual share of this. In fact before we moved when I was still a baby, my older brother was the scapegoat of the entire town we lived in. And as I got into school, I became as subject to bullying by teachers as I was by other students.
My initial reaction was just sheer emotional overload. I came home and screamed and cried for hours. I couldn’t understand why people hated me so much, I hadn’t done anything to them other than exist near them. And eventually I just went numb. Nothing the few people in my life who did treat me like a person could do, was enough to counteract the fact that in the majority of my life I was treated more like a target. The only way I could deal with it was to cut off the parts of me that knew what it was like to be treated like a person.
I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?
Because even the most well-meaning of our relatives can also cause problems for us in this regard. As autistic people, our responses to our parents are often (not always) different in some way than non-autistic people. Many parents unfamiliar with autism will conclude that we are uninterested in them, or even averse to their presence. Even some who see us as socially related to them will be told by doctors that, if we are autistic, this is an illusion, and that autistic children don’t relate to our parents. (Scientific studies, by the way, say otherwise. We do in fact generally have the same degree of attachment to our parents as any other kids.) The myth of the refrigerator parent has been replaced with the myth of the refrigerator child, and many of our parents will believe the new refrigerator child myth.
This in turn affects how they relate to us. If you think that your child is indifferent to you, even rejecting you, you treat them differently than you would treat a child who isn’t. You might either spend less time with them, or spend an inordinate amount of time trying to force them to connect to you in ways that might be physically uncomfortable to them. You might talk in the child’s presence as if the child is not there and cannot hear you. You might characterize the child as lacking in some fundamental attribute of humanity. You might bombard the child with overbearing social approaches that cause the child physical pain without meaning to.
Any and all of which can give us a pretty warped experience of social situations within our own families. Note: I am not trying to blame parents for children being autistic, or for their own ignorance of what being autistic is. I know that discussing parenting in autism in this manner is a taboo subject because of the old psychoanalytic theories of autism (theories I’m familiar with because my own mother was subject to them even as recently as the nineties and I’m very aware of how much pain they cause for families). But I know no way to discuss the effects of growing up autistic around families who don’t understand how to relate to autistic children, without getting into these topics, taboo or not.
An interesting aspect of this in action was the “Autism Every Day” video in fact. I showed the video to the people at the MIT Media Lab recently, but instead of watching it straight through, we stopped it and focused on the social behavior of the children in the video, and the parents in the video. The interesting part to me was that the social behavior of the children was not only often invisible to their parents, but often invisible to the people who worked at the Media Lab as well. I had to point out to them things like one child speaking to her mother and inquiring about her mother’s emotional state, another child’s affection, another child looking up at his mother’s face to gauge her feelings. We concluded that somehow through the camera person focusing on the mothers, combined with the mothers focusing on the camera people, the viewer’s focus was not on the social overtures of the children, who were then possible to describe as not engaging in social overtures even when they were very clearly affectionate, social, and concerned with their parents’ feelings.
So again, how do we measure innate level of social skill in this context? This is a context where autistic people’s parents are somehow (possibly by training from doctors, possibly through instinctively looking for a different set of social cues than the ones we use, possibly because of some other construction they have in their heads that overrides what’s in front of them) clearly not noticing our social approaches or our concern for them.
But it is also a context where many of the things — such as eye contact and physical contact — often used by parents to show affection for their children either panic us or cause us physical pain, and where our “emotional growth” might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis. Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations. To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).
So most of the family situations available to autistic people are some combination of the following, at least at first:
1. Not noticing or understanding the way in which we show affection, social relatedness, and emotion.
2. Using, with good intentions, social approaches that cause pain or fear in us.
3. Forcing social approaches that cause pain or fear in us in the hopes that it will make us into more socially related people.
4. Gauging the appropriateness of our social development in terms of our ability to silently endure that pain and fear.
5. Lacking the sort of social approaches that we can actually process and handle as autistic people.
6. Hearing things said about ourselves, in our presence, that are not true but that we might absorb really early. (Both hostile things and innocent misinformation, potentially.)
This is not to say that our families don’t love us, don’t care about us, don’t want to be doing the right thing. We are born into the usual range of families that any other group of people are born into. But these sorts of things happen even in most well-intentioned and loving families.
And most of our social experiences outside the family are of some combination of rejection, ostracism, hostility, and hate.
What does this do to us?
Can anyone say that in all the time that autistic people have been studied, from the days of the refrigerator mother theory to modern-day genetic theories, anyone has ever separated out what is intrinsic to autistic perceptual structures and what is other things, such as the adaptations that we have to make to a world that is so consistently hostile to us even in environments that would seem loving to most non-autistic children (and we’re often in environments that would not even seem that)?
Because I don’t think they have.
I still have the perceptual system that makes me autistic. But many emotional and social connections are no longer walled off the way I had to make them to survive earlier in life. It’s sort of like the bruised nerve I just got at the dentist, that started out making half of my chin numb, then flooded with pain, and now subsiding to something near normal. I’m past being numb, and getting past the flood of pain, and getting to some level of whatever is normal for me.
There was a level of detachedness, selfishness (the genuine thing, not something mistaken for it), and other things, that were there almost all the time before but have melted away along with the numbness. (I know I must have caused problems for people with some of this stuff. I’m sorry.) I can feel parts of myself internally that I couldn’t before, and I can now perceive parts of other people that I couldn’t before because I was too busy denying that they existed in myself. Things are changing very fast, and although this was gradual in coming, it feels sudden.
And I want to know how many of my emotional and social problems of that nature could be truly blamed on autism (the cognitive and perceptual state), and how many could be blamed on growing up autistic in an extremely hostile environment for autistic people. And I want to know how much this discrepancy exists for other autistic people.
I want to know what a world would look like where autistic people were really and truly accepted in all areas of life, and interacted with in ways that were accessible to us. At least, to the extent anyone else is. I wonder if we would look more empathetic and more social if we didn’t have to deaden those parts of us to survive the onslaught that awaits most of us at school and other places, and if we were around enough people who resembled us that we had early exposure to people whose body language and such made sense to us. I wonder what people with autistic perceptual systems would look like in an autistic-friendly world, and whether our differences would still be too often described in terms of “social skills” and so forth.
Ballastexistenz 
Your analysis of who the camera in Autism Every Day was focused on is very revealing—-viewers are directed to look at the parents and put themselves into the parents’ shoes, and to “observe” and “watch” the child providing so to speak evidence of “autism every day.” As you point out, there are more ways to show affection than the “normal” and “usual” ones—-my own family, being Chinese American, was not very physical and eye contact was not a very big deal (nor was talking). And I am also reminded about how, in the past few years when I let go of certain specific “goals” that I thought my son had to achieve, he has started to do better in school and in general, because we try (and we make mistakes all the time; we keep trying) to start from where he is. Social skills are more arbitrary than they are said to be.
I know this isn’t quite what you were discussing, but I remembered the justification for why children are studied so much more than adults, because adults have aquired so many adaptations that will be their own adaptations and not autism.
On the other hand, it would seem, in your experience that some of the adaptations you had at age 10 are now less influential or less something than they were.
I was getting angry today at someone about how I don’t like to go to parties (I felt like they were judging me as unfriendly and ungrateful) and I said, “I’ve always hated parties. I really hate them when I’m at the center of attention.” And that is true for now… but in fact I didn’t used to hate parties. I don’t know if it’s aging that is making me more sensitive to social stuff or what. I just don’t feel happiness from being in a crowd of 10 or 15 people as much as I do with one other person (in any sort of situation, 1 is much less stressful).
Anyway, I am really happy that you had that experience of being accepted and feeling those scars or callouses or ?? melt away. I think you are absolutely right about the problem of a lack of reciprocity going on between parent and child as being a huge part of what is seen as dysfunctional in autism.
I was telling my friend today about situations (one in the book Reasonable People) where parents relate the horror of having an autistic child. They take the child on a plane or to a shopping mall or some place that seems obviously OVERLOAD city to me. The kid has a screaming thrashing meltdown of gigantic proportions and… the parent gets to explain what happened. “This kid is impossible. This autism is awful. This situation makes me feel so negatively toward my kid. This kid is a monster. Why me? ….”
But to me, as I explained to my friend, it’s just that the parents were IDIOTS for putting the child in that situation. In the same way you can’t just decide to take a fish out of water and lay it on the ground to play with it and expect the fish just to deal, there are things parents CAN NOT expect from their autistic kids. The price will be self-injurious behavior, melt-downs, illness, emotional distance, emotional trauma and emotional scars on the kid. But there’s this sense of entitlement. If all the other parents can take their kids on the airplane, so can I, come heck or high water, this kid will do as I say.
My friend was there at a time or two when I pushed my kid to the edge of his/her tolerance of stress. I said, I was lucky my kid wasn’t the sort to scream and hit, etc, and also I wasn’t willing to make my kid cry and obviously suffer so that I could do what I wanted to do (in this case, go up in a glass elevator), or rather after the kid showed so much distress I discovered that it wasn’t worth it for me to have my fun at the expense of the kid.
Maybe that’s off topic, but I think it’s part of the emotional scarring that parents impose on their kids… without knowing, usually.
I wish parents had portable galvanic skin monitors to see what their kids are going through, the way you did at the MIT lab.
“I hadn’t done anything to them other than exist near them.”
What are you TALKING about? Don’t you know that autistic people do all sorts of AWFUL things? They FLAP, they ROCK, they GET OVERLOADED, they DON’T RUN THEIR MOUTH OFF AT EVERY OPPORTUNITY (my biggest crime) and sometimes they HANG OUT IN THE LIBRARY!!! (my other crime.)
Do you have ANY IDEA how traumatic it is for people to witness things like that? Genocide is NOTHING compared to having to sit next to someone who is FLAPPING THEIR HANDS!!
“The interesting part to me was that the social behavior of the children was not only often invisible to their parents, but often invisible to the people who worked at the Media Lab as well. I had to point out to them things like one child speaking to her mother and inquiring about her mother’s emotional state, another child’s affection, another child looking up at his mother’s face to gauge her feelings.”
They didn’t notice those things? But…
but…
how?
They were there staring them in the face!
Rachel: They would sometimes pick up one little bit of it, but they never saw every instance of it, we had to go through it slowly and point out each piece of information individually. These were not uncaring people or even people who weren’t looking for these things, so the interesting part then is there’s something about the way the video is made that will pull the focus of a non-autistic person away from noticing these things about the child even if the person wants to notice them. They did notice them after they were pointed out, but not necessarily before. That also has implications possibly for what non-autistic parents are able to notice about their children after they’ve been inundated with misinformation that says that their children are not relating to them and such. Also for what researchers into autistic social skills are able to notice, when said researchers are both non-autistic and unaware what to look for.
Ms. Clark: Some of these adaptations are things that autistic people can form extremely early in life, I’m certainly talking about before age 10 in my case. I’ve known autistic people who were already pretty screwed up by this stuff before the age of 5, even. And then you get into the fact that there are known differences in the way autistic people are able to think, communicate, relate to the world, etc, before and after the age of 5, that would also confound research in various ways to confine it to very young children.
Also, by the way, the autistic community at times over-glorifies traits that are only sometimes (if at all) related to autism. In fact, it can go so far that some people within the community won’t believe that a real autistic person can lack these traits. When some autistic people might have those traits innately, some might not have them innately but might have acquired them as adaptations, and some might have never even acquired them as adaptations, and all three groups of people are just as autistic.
This is another reason that the peer pressure in this community that takes the form of “If you don’t experience the world just how I do, you’re not autistic” is damaging to us. It can also make it harder for us to move past traits that are really not innate to us in the first place, that don’t reflect how our personality would be without heavy modifications that we don’t always need anymore.
That is interesting. Maybe it is because I was focussing so much on the children that I was able to pick up on their communication so easily?
“Also for what researchers into autistic social skills are able to notice, when said researchers are both non-autistic and unaware what to look for.”
This is true. However, things like what you mentioned- children speaking to their parents, asking about their emotional state, looking into their faces- these are things that neurotypical children do, too. I would like to see a video about living with neurotypical children that is made in the same way as the Autism Speaks video, and I would like to see if people fail to pick up on the communication that the people in that video have.
Did the people who you were working with notice how many of the PARENTS seemed to be blind to their childrens attempts at communication? That was one of the first things that struck me about the film. It broke my heart.
Follow-up to the other comment (sorry about making 2 in a row; I thought of what I wanted to say as I hit the Submit button)
It would also be interesting to show my hypothetical film to groups of autistic people and groups of non-autistic people and see which group was more taken in by the way it was made and less able to pick up on the communication.
I do believe that the environment that a person on the autistic spectrum is in can make an awful lot of difference as to how they are perceived, which, in turn can affect their emotional state to some extent. From a personal perspective I know that, to an outsider, I would have come across as being far more noticeably different when I was in secondary school, as opposed to primary school. I had not changed, become more on the spectrum. Throughout primary school I had flapped my hands, spoken to many people through my mum, rarely initiated, had difficulty expressing myself, was very focused on a few things and was noticeably different enough for my headteacher to comment on it. And yet, attending a small village school, with only 100 pupils and 5 classes in the whole of the school, with little need to worry about transitions as most lessons took place in one room and two years of my primary education was spent with the same teacher meant that I got through the ages of 6 – 11 unaware of just how different others viewed me and quite content with how things were going. Then we moved and my last year of primary was spent in a school that was twice the size, with a completely different layout and with new difficulties like uniforms with ties. I started to notice I did not fit in, the confusion of the larger, more busier environment, combined with the fact that the other children were shifting friendships away from games and more to gossip and peer pressure whilst I still wanted to play the games and had no concept of peer pressure, meant that by the time secondary school started I was becoming more and more withdrawn and more and more subject to bullying. I had not changed, my perspectives, my way of thinking, my interests were not more or less proof of my being on the spectrum, but the changing environment meant that I was seen as more “odd” and “weird” and “incapable”. My parents, realising I was different, but not knowing why, grew exasperated when I didn’t seem able to grasp the simplest of concepts, when another year passed without me having friends, phoning someone up for a chat, or going into town with someone, for example. I was messy, disorganised, unco-ordinated and spent most breaktimes staring into space, unable to respond as I was verbally bullied. If you had seen me at age 8, then at age 13 you might have concluded that I was more on the spectrum at age 13, based purely on my outward behaviour and emotional state, but the fact is I was just as much Aspergers at age 8 as I was at age 13 and as I am at 31.
I grew up without a diagnosis, others noticed I was different but my mum didn’t want me assessed. And whilst that meant I grew up without any help, it also meant that nobody ever told me that I acted and did things a set way because I was on the spectrum. I grew up doing a lot of things that are now counted (rightly or wrongly) as being on the spectrum, handflapping, pacing, mild rocking, lightly chewing my fingers and twisting them round each other, staring at my hands, focusing on small details, fixated on historical events and dates, fascinated by counting and multiplying numbers in my head, looking at very small and close up details of things, seeing a letter, then a corner of a book, rather than taking the book in at one glance. There’s loads more. But because no-one had told me that my actions and perceptions were something to be studied, or repressed, I continued doing them with no more of a second thought than if I was breathing.
Whether neurotypical children do those things too has nothing to do with whether a non-autistic person will notice them in autistic children. What does have to do with it is that people tend to organize their perceptions by rules, and once they learn the rule that autistic children are not doing this, then they are unlikely to see autistic people doing it no matter how obvious it is and no matter in how many other contexts they would recognize what the behavior meant.
Amanda,
Is it okay if I translate that text to portuguese? I’ve been debating in an online group mostly composed of pretty misguided mothers of young autistic kids, and have pretty much given up trying to get some basic sense into their heads. Still, I’d like to try a last shot with this wonderful story.
I should have said before I’m a great fan and follow Ballastexistenz religiously. I guess one of my “traits” is that I don’t just come forward and communicate unless I have very good content to put out. This seems like the correct occasion to mention it, though. Thanks for all the wonderful work!
Thank you for posting about this. I am explaining to my autictic daughter as she sits next to me why I am reading this and why I am typing. I am telling her that I think Amanda is really smart and cool and interesting and that I like to read what she writes.
Autistic. Sorry! I am typing while explaining.
>>>And I want to know how much this discrepancy exists for other autistic people.
The world would be so much better if each person was accepted and cherished for who they are–not what someone else wishes them to be. It is sad to read that being treated as a real person at the conference was such a unique experience. We all deserve to be treated like that every moment of every day.
I think part of the problem is that there are parents who take it as a personal slight when the child seems to “not like them,” and from there, it’s easy for them to get on to thinking that they have this horrible evil monster child, or an empty shell, or at least an uncaring brat. Our mother said quite a few years ago that she stopped hugging us when we were little because “you pushed me away,” and she took this as sort of a personal insult. We’ve known other people whose parents characterized them as “cold and heartless,” just based on what the parents perceived as a lack of reaction to certain things, and then told them this so often that the children ended up believing that they did, in fact, lack empathy or the capacity to care about other people in any form at all, then went on to characterize themselves as cold and indifferent while still obviously having emotional reactions (in some cases, very strong emotional reactions to things that most people were uncaring about).
A lot of misunderstandings arise out of the assumption that everyone, everywhere, has the same body language. I’m not sure if it’s a regional thing, but I very frequently have to deal with people thinking I am “uncomfortable with them” or similar, due to not making eye contact, and believing they could “put me at ease” by getting in my face and staring at my eyes and grinning and cornering me with being VERY VERY VERY FRIENDLY, like a dog who says hello by jumping up on you and knocking you to the ground. I do smile, but I don’t like enormous, toothy grins right in my face– it feels, as you said, somewhat like a predatory gesture.
I really don’t know how to go about overcoming the enormous bias prioritizing certain types of body language, particularly eye contact, over other kinds– it’s used by potential employers to determine whether a candidate for a job is “honest” and “friendly”, by policemen, judges and therapists to decide whether you are “telling them the truth” or whether you are “hiding something,” and a whole lot of other things that can result in a person’s being fired, arrested, imprisoned or worse, all based on a movement of the eye muscles that doesn’t actually express nearly as much as people believe they can read in it. (viz. all the times we and others have been told that someone could “see something in our eyes,” when what they believed they “saw in our eyes” was not even something we were feeling at the time. I think that most of the time, what people think they “see in your eyes” tells you much more about them than it actually reveals about you.)
Hmm… but this entry has given us a lot to think about, in other ways… I remember distinctly a period of our lives during which we believed that we couldn’t have friends, and couldn’t form real attachments to people. I mean, we did interact with others, but only on an intellectual level, and our emotional investment in it was limited to trying desperately not to anger them or make them think we were terrible people, even if we didn’t like them as such. I now think that a certain part of it was because we had, in fact, by that point, given up all hope.
I don’t know if this fits exactly what you were saying, but I remember an argument between two young men with Asperger’s dx’s, one who had demonstrated a great imagination taking offense at the other who insisted, absolutely that autism spectrum people lack imagination.
Hmmm. I wonder if it’s true that any spectrum person actually lacks or is particularly deficient in imagination.
One fellow who I really thought was on the spectrum, but had been dx’d as psychotic (but didn’t have delusions) had this incredible imagination and could write amazing short stories. I remember thinking how hard it would be to convince a typical psychologist that this guy fit the description of ASD, even though it is said specifically that ASD people are not able to write fiction (not able to describe the mental states and motivations of others).
I’ve seen a lot of autistic people who do fit (or think they fit, or try to force-fit themselves to even though they don’t fit) various stereotypes making it sound like “real” autistic people always fit those stereotypes.
Like, for instance, that “real” autistic people have no social desires, or if they do have social desires, it’s only of a very specific limited type. Or that “real” autistic people don’t experience certain emotions (which ones, vary). Etc.
A lot of it is down to interpretation and perspective, I suppose. For example, I would define myself as not particularly social as I don’t desire loads of friends and to always go round to people’s houses and chat and gossip over the phone. Nor do I like working as part of a team when I do have paid employment. But does that mean I dislike people and that I don’t want ANY friends? Of course not. I am very chatty on a parenting forum I go on and through that I’ve met some friends that I know in the outside world. 99% of my communication with them is still via the internet, or through emailing, but I know I can talk to them about anything, so the fact that I don’t phone them, for example, does not mean I don’t perceive them as friends.
As far as empathy goes, I think that often people mistake the term for sympathy, or they place their own perceptions on to what they believe another person must be feeling. A lot of the time, due to common shared experiences and interests, they are right, but that doesn’t mean they should always presume to be right. I have lots of sympathy when somebody has had bad news for example, but unless it’s an experience I have been through I would not say I have empathy. However, if we define empathy as a sharing of emotions between people then I am highly empathetic when it comes to listening to someone arguing or crying, as I will then start crying myself, regardless of whether I have experience of the situation.
As for the whole creative writing, imagination scenario, well, I am very creative, love writing stories and poems and am definitely on the spectrum.
One fellow who I really thought was on the spectrum, but had been dx’d as psychotic (but didn’t have delusions) had this incredible imagination and could write amazing short stories. I remember thinking how hard it would be to convince a typical psychologist that this guy fit the description of ASD, even though it is said specifically that ASD people are not able to write fiction (not able to describe the mental states and motivations of others).
I think the idea that autistic people are deficient in imagination really just shows the deficiency of the people who observe them in being able to spot the different manifestations of imagination.
For instance, “lack of imaginative play in childhood” is something that’s cited as some sort of universal trait shared by all “real” autistics, but it often seems to turn out that play is only defined as “imaginative” if it involves socialization with other children and speech. We used to play about being all kinds of things in childhood, including dogs, cars, dishwashers and refrigerators, but if you’ve arbitrarily decided that a child is only “playing imaginatively” if xie is interacting with other children and saying things like “let’s play house,” you completely miss a lot of things. (A lot of the time, our family *could* tell what we were playing about, because they knew that certain noises meant we were being a car, and similar. But doctors might have dismissed those same noises as “meaningless” and as not being anything that showed any kind of imagination.)
…actually, I know I can’t claim to have any kind of random scientific sampling, but I’ve met a fairly high number of autistic people who either played about being, or identified with, inanimate objects. I think that if you’re able to attribute states of mind to objects, you have a better “theory of mind” than professionals who can only attribute a certain state of mind (imagination) to people who behave in very specific ways.
…just FYI, we’ve been writing stories (although not always successfully finishing) since we were 8.
…on the subject of attributing different mental states and motivations to others, a lot of amateur writers, who aren’t autistic in the least, have trouble setting up motivations for their characters that are separate from their own. Almost everyone starts out basing their characters on themselves.
Hello,
I would like to see the “Autism Every Day” video for myself, but the only way it’s available (that I have found) is for Windows Media Player, and I have a mac. Getting WMP for my mac is out of the question.
Do you know how I could get ahold of the video?
There’s a downloadable doodad called “flip for mac” that works for my macbook. It’s free. I can watch wmv files, now.
Autism is defined as an inabity to form social relationships. According to the DSMIV autistic people are unable to establish peer relationships suitable to their developmental level. Autistic children are described as not wanting to relate to other people, even their parents. Kanner used the expression “an extreme (or acute) autistic aloneness”. This supposed inability to relate socially to other people has always been considered as intrinsic to autism. Maybe it is very difficult to disentangle the social and emotional problems that autistic people have from autism (the cognitive and perceptual state), because they are so closely intertwined.
Amanda: re your comment #6.
I am sceptical that there is such a thing as “the autistic community”. I don’t know if all autistic people can be put into one community solely because they are autistic, or is the autistic community only those autistics who identify themselves as being part of that community. Maybe there is a multiplicity of autistic communities, but which do not include all autistics.
I am wary of putting groups of people who share a common attribute into communities. For example, not all gay and lesbian people regard themselves as being part of the gay and lesbian community. Nor do all scientists consider themselves as being part of the scientific community.
Leaving aside the question of whether there is an autistic community, what are the traits that are only sometimes (if at all) related to autism that the autistic community at times over-glorifies?
Philip, the problem you are having is that you are relying on non-autistic people’s social perceptions of autistic people, rather than on the actual known evidence (not guesswork — and even Kanner’s characterization of aloneness and the reasons for it were guesswork, if you remember he also regarded autistic people as “rejecting” food the same way they “rejected” social interaction, if they had problems keeping food down as babies) around what is and isn’t true of autistic people.
In reality, the cognitive/perceptual differences in autistic people are equally present in social and non-social situations. In reality, autistic people are no less attached to our parents than non-autistic people overall. You are relying on essentially, guesswork piled on top of guesswork piled on top of conjecture about what autistic people were feeling and thinking based on our outward appearances. The assumption was that autism is primarily social in nature, that has been challenged very successfully by research into what actually makes autistic people different — which turns out not to be social stuff for the most part, even if we do have social problems in a society of non-autistic people.
And yes, the bias runs right down to the core of the diagnostic criteria and the traditional conceptions of what autism is. They talk about failure to develop appropriate peer relationships. Who gets to define appropriate? Who gets to define who counts as a peer? Who gets to define whether the opportunities to develop those relationships have really occurred, or whether the autistic child has merely been put in an environment where a non-autistic child would easily develop those relationships?
These criteria all presume that the environment is neutral and that we know what normal should be for everyone, and those are not safe assumptions to make. I would be willing to bet that many people diagnosed as autistic would not show “inappropriate peer relationships” (or not as highly “inappropriate”) if in a more autistic-friendly social environment. Would this make them less autistic, or undiagnosable? No. Do some people unfairly go unidentified as autistic because they are in such a rare autistic-friendly environment and do develop relationships that they wouldn’t in a standard environment? Undoubtedly.
You can’t act like the criteria are unbiased. These biases have been there from the start, coloring how people look at autistic people. Look closely at the “Autism Every Day” video and you will see children very attached to their parents, sometimes extremely concerned over their parents feelings, but most people won’t see it, because they’re being persuaded not to see it. If it took my pointing it out for a bunch of relatively open-minded people to see these things, then what does that mean for the history of autism theorizers? Kanner had his biases too, and everyone since then has built on them.
Autistic community vs. autistic communities is semantic more than anything. I’m fully aware there’s no unified “autistic community.” But the things I’m talking about, are things like being unemotional, socially detached, etc. My guess is that autistic people would naturally run the entire range of social attachment and emotionality, from very introverted to very extroverted, from very emotional to very unemotional.
Being in an autie-unfriendly environment from an early age (and most of us are, even if it’d be a friendly environment for anyone else) can push us in the direction of being more isolated and emotionally shut off than we otherwise would be, and I’m skeptical that this is all “just because we’re autistic” and that in an autie-friendly environment we’d all be just like this too. Certainly some would, but I am guessing far fewer.
But no, autism in terms of the cognitive/perceptual traits is being shown not to be fundamentally a social condition, even though it clearly affects how we relate socially. We’re being shown to have the same range of attachment to parents and caregivers as anyone else. We’re even being shown to have demonstrable “theory of mind” from an early age if given tests that are less biased by language, and same with tests of academic skills.
So basically, yes, people have been saying very inaccurate things about autistic people for a long time, but they are inaccurate and that’s becoming more and more apparent as time goes on. The fact that we’ve been defined in an inaccurate way does not mean that the right thing to do is go back to the oldest misconceptions about us (based on interpretations of outward behavior) and stubbornly repeat them as if they are the Real Truth, in the face of more and more evidence that they are not the truth at all, or at best that they are half-true guesswork that may be part of a more complicated situation than what has been historically presented to us.
Saying that autism is social-centered because Kanner (and those building on his ideas) said so, is like saying that epilepsy is contagious or psychiatric because that’s what used to be thought. And saying that social stuff is central to autism because we obviously have problems in a non-autistic social environment, may very well be the equivalent of saying that language impairment is central to deafness because some deaf children can’t learn lipreading and receive no exposure to sign language and thus don’t learn language or don’t learn it very well by the time they’re exposed to it (despite what would’ve otherwise been totally normal levels of language skill if they’d been exposed to sign early enough).
I think if people define affection in too narrow a way, then when some people show affection in a different way it can be perceived as them being unconcerned about affection. Which is, of course, nonsense. I have just in the last couple of years (I’m 32) got to the point of saying “love you too” or “love to you and dad” to my mum and have rarely hugged them. However, I showed how much they meant to me by spending hours researching things about their tiny village as a present, quietly watching my mum bake and once getting into a state of sheer panic because I thought my dad was driving off somewhere without me. My son kisses with his forehead, so if you don’t know that’s how he kisses you’d think he was just headbutting you. He has repeated back “love you” once, certainly never said it spontaneously. But I know he loves me and other members of his family.
Yeah. I remember reading a book by an autistic woman who described showing affection to her mother by backing into her, which was not interpreted as exactly an affectionate gesture!
Another thing to keep in mind, is that autistic people might have more trouble with one skill if focusing almost exclusively on another that is extremely difficult.
Philip, re, “communities”:
To give you some analogies: There are plenty of deaf and hard of hearing people who don’t in any way, shape, or form consider themselves members of the signing Deaf community. Instead, they integrate themselves full time into the hearing community, marry hearing people, etc etc. and basically function like hearing people with broken ears, I guess.
But if you met Deaf people who marry other Deaf, who go to Deaf-centered events, congregate in the kitchen every time they go to a Deaf party (in both the United States and in Costa Rica, Deaf parties ALWAYS end up in the kitchen even if they start in the living room), exchange stories and poems in their native signed languages (yes, there is such a thing as signed poetry–and NOT just translations of poems from spoken languages), and so on and so forth–then you would know that there very much IS an active, thriving vibrant Deaf community. Or Deaf communities (plural), depending on how finely you define the boundaries of communities. But the fact that some people who happen to have the same audiological profile don’t belong to the community (or communities) doesn’t mean that it doesn’t exist.
Ditto for the GLBT community. I am a bisexual woman. For the most part, I don’t particularly seek out GLBT people (although my partner does happen to be a transsexual male to female lesbian, and I do participate in one mailing list for Deaf transsexuals even though I’m not transsexual myself). But just because I’m not really a member of the GLBT community (or communities — and here I do have to consider this in the plural, because many transsexuals in particular don’t really see themselves as members of the broader GLB community, and there are even more complex divisions beyond that) does not in any way mean that I deny the existence of a GLBT community. It exists, whether or not I choose to participate.
Similarly, the fact that some autistic people might happen not to be active in the autistic community cannot possibly imply the nonexistence or lack of validity of the autistic community (or communities).
When I first went to work with autistic students, I had a supervisor who knew how to relate to human beings in all their differences, and the first thing she said to me was, “These are all people and they all communicate and relate. They do it in different ways on different levels.” I became aware early on that someone who never looked at me was still “tuned in” in ways I couldn’t even describe. It’s a question of being open to the ways people are, of paying attention to them. (I still developed enough Staff Syndrome to make me wince retroactively when I remember some of the things we took for granted.)
I am glad you had that experience of being valued and accepted. In a much less terrible way than your experience, I moved some years ago from an environment where I was valued to one where I am not, and have discovered how dehumanizing that is and how much less I can do in such an atmosphere.
Personally, pretty much everything Amanda says, both in the blog entry and in the comments in this discussion thread, make sense to me. There is a large body of research that suggests that the expectations of other people can have a PROFOUND effect on children’s behavior. For example, I remember reading about some study that found that if teachers were told that certain children were smart (or perhaps they simply added a few extra points to their IQ scores) then the teachers would treat them differently, expect more from them etc — and the kids would respond to that and actually learn more and behave in ways (academically) that you would expect for smart children.
Also, I remember reading once about some syndrome (I forget the name of it) that, among other things, means that a girl will tend to be small for their age. So when they’re 8 or whatever, they may LOOK like they’re 6 or whatever. Because of this, parents and teachers tend to forget their real age and treat them as the age they LOOK. And so many of these kids end up BEHAVING the age that they LOOK instead of the age they ARE–meaning, immaturely for their age. But if parents/teachers do better at reminding themselves of the child’s real age (“she looks 6 but she’s really 8, and the other 8 year olds I know are mature enough to learn how to share better” … or whatever) then they hold the child to higher expectations and they respond to that.
Another thing that comes to mind, though this is not quite the topic under discussion: I know one person who had a family who didn’t really understand or accept her deafness, but particularly the fact that her hearing loss fluctuated from day to day. So if she heard one thing one day they’d expect her to hear it again the next day. But in her case, these were simply not valid assumptions. So she simply pretended never to hear anything at all (even if it was actually loud for her) so her family would believe and accept when she really DIDN’T hear something.
I know I’ve sometimes done similar things. I don’t normally go to the same lengths as she has, but if I’m in a context where it’s important for a hearing person to really GET that I’M DEAF (and need certain adaptations), and if I’m not sure they will understand that “deaf” does NOT mean “total inability to hear” (contrary to what a lot of hearing people seem to think, deaf SIMPLY means, “does not hear well enough to talk on the phone” — but this still leaves a WIDE range of possible hearing levels, even without mentioning hard of hearing people who CAN talk on the phone), then sometimes I will find myself automatically supressing my reactions to sound as a way of reinforcing other people’s understanding that, yes, I’m deaf, I can’t hear, I need appropriate accommodations. So I know from first hand experience the ways that one can instinctively learn to fit into other people’s stereotypical expectations even without intending to, as a kind of survival skill to ensure that you get the accommodations you need. It makes sense that autistic people would respond the same way.
I once read a review about some book (I forget the title) that talked about the five primary “languages” of love. The basic premise is: there are five primary “love languages” (I’m sure in practice it would be possible to identify more, but I’m describing what the book says). And each person has one primary “love language.” For example, one person might express and perceive love primarily through touch, while another may need to hear (or say) the WORDS “I love you”, and so forth.
Most of us “hear” or perceive all five “love languages” (or at least most of them) to some degree, but the premise of the book is that most of us have ONE “love language” that is clearly dominant. (In my case, I have to identify two: touch and verbal, which would seem to contradict what the book says. But if I really had to identify just one, then I’d say touch is my most important “love language”. I’m not autistic, by the way, so at least I don’t need to deal with sensory overload issues.)
(Says the book): If the people around us don’t communicate love to us through OUR OWN primary “love language” then we might not pick up on it at all. So for example, if someone’s primary “love language” is touch, and nobody really touches them much, then they might not FEEL love even if others very clearly show love in other ways. (By the way, one of the things I learned from this book review–or maybe it was a newspaper article, sorry, can’t remember–is that touching doesn’t necessarily have to be “nurturing” touch–it does for me, but for some kids, wrestling or “rough housing” fits the bill perfectly. Or, in #26 above, Amanda writes about a boy who backed into his mother as a way of showing affection–so perhaps this might have been a boy whose primary “love language” happened to be touch, and for whatever reason — autism, sensory issues, something in the environment, or just his own individual quirkiness– this is the way that touching was most comfortable for him.)
Or if a child’s primary love language are PRESENTS (as a symbol of parental love), but the parents rarely buys them presents, then they might not FEEL loved even if their parents say the words “I love you” and hug them all the time.
(For me, it was a surprise to learn that presents could be a “love language.” I’ve never had a particular attachment to presents except at a purely materialistic level :-) But apparently some people see it as a signficant symbol of love and really need presents to feel love, and make a big deal over each one — they put somewhere in their room where they’ll see it all the time, in a place of “honor” and so forth. It doesn’t have to be expensive things, it can be any small thing that shows you were thinking of them even when you were physically apart, say on a trip or something. If “presents” are a primary love language for someone reading this, then this would not seem as mystifying to you as it does to me :-)
So suppose that present buying had been a key love language for my parents, instead of touching and talking and signing–then I might not have felt “loved” because I wouldn’t have understood presents as an expression of “love” but simply as, “hey, I have more things!” But luckily for me, my love language just happened to be mostly compatible with that of my parents.
Another “love” language is spending TIME with the person. And I believe that doing things for another person, or helping them in some way is the fifth love language, though it was a while ago that I saw this review (or article … or book) so I can’t be sure I remember correctly. But if that is correct, that would fit in with what bullet says in #25 above.
Or, if you’re talking about the same autistic video here that was discussed a while ago, I believe there was mention of one autistic girl who kept touching and hugging her mother on the video in really obvious expressions of love but the mother just wouldn’t perceive it as a communication of love –she had to HEAR the words. (I think I saw that video on-line some weeks ago–of course I couldn’t understand the words, but if I’m thinking of the same girl others were, her expressions of affection did certainly seem very obvious to me as well, to the point where I’m amazed that the mother didn’t pick up on them.)
Now, I do VERY much agree with Amanda that expectations for what “autism” supposedly means probably made a HUGE difference in how that poor girl’s behavior was perceived (“poor girl” here meaning “poor girl to have to deal with a mother who doesn’t know how to pick up on her signals of love”, NOT “poor autistic girl”). But in light of the theory about “love languages” I have to wonder if maybe there is ALSO another layer on top of that, in that perhaps the mother’s primary “love language” is very heavily verbal, and maybe touch is a particularly weak “love language” for her.
So, yes, it seems that most (or, certainly, a great deal) of what needs to happen here is for parents (and the so-called “experts”) to simply understand that most old ideas about autism are simply wrong and recognize that, yes, most autistic kids DO love, and feel affection, empathy, etc, they just express it differently. So they might still crave touch, but prefer head-butting (kissing with the forehead) or backing into people as a way of getting it. Or not touch at all but research their loved-ones’s old tiny village.
But I wonder if it might ALSO help to teach parents (ALL parents, not just parents of autistic kids) about the different languages of love, and learn to both USE and RECOGNIZE all five of them (or whatever number there really are–I suspect the truth is more complex than the book implies), INCLUDING the ones that might not initially come naturally to them. So a parent who does not have a natural inclination to using assistance as a form of communicating love (“let me research that topic for you”, or whatever as with bullet in #25) could be encouraged to learn to look for signs of their kids doing that, and encouraged to respond in kind.
WOW! Some really good points were made here, about bias and community which can definitly be applied elswhere. Anyway, i’m speechless now… after reading all that, i don’t know what to say… except that those were some pretty good points!
Amanda, of course the diagnostic criteria for autism are not neutral. They are what the psychiatric establishment considers to be abnormal or pathological behaviours.
Language is not neutral, it expresses the established conventional view.
“Appropriate peer relationships” for children are what are generally considered to be “normal” relationships with children of roughly their own age. But the terms appropriate and normal are not neutral terms. A boy who dresses in girls clothes and plays with dolls with similarly dressed boys of his own age would generally be regarded as behaving inappropriately, though tomboyish behaviour by girls is considered more or less appropriate, even to some extent praiseworthy.
Your argument that autism is not social-centered subverts a central belief about autism. Yeah great. I like it. But it is a new concept for me and is radically different from what I have always thought is fundamental to autism. Maybe there is no absolute “true” definition of autism, but greater or lesser approximations to the truth.
It will be many years, if ever, until the autism criteria in the DSM are rewritten so that, as much as possible, they define autism as it really is. But the very fact that autism is in the DSM means that it is regarded as a disorder, with it being undesirable to be autistic. So remove autism from the DSM. Maybe get rid of the DSM completely.
I think of environment in the sense of the home, and also in the sense of the general climate of opinion. An autistic child may grow up in an autie-friendly home with autistic parents and siblings, but the curent prevailing climate of opinion is hostile to autistics who are characterized as a devastating burden to their parents and society, incapable of love and affection, and all the other lies about us which are so prevalent.
Philip — you might be interested in this paper, which puts forth a theory about autism that, while imperfect, seems a lot closer to the truth to me than a lot of the social-centric theories, and also than the weak central coherence theory I often hear about. It goes into why a lot of the social-centric theories don’t measure up to what’s found about us, either, and it’s pretty interesting if you can wade through the jargon:
etc
Phillip wrote: Maybe there is no absolute “true” definition of autism, but greater or lesser approximations to the truth.
I think the critical point is that the social-centered model is not just not accurate, but also a self-fufilling prophecy with some really likely negative consequences. So, it’s a practical distinction, in that it would effect not just how people think about autism, but how they’d react to and treat autistics. I don’t think it’s just a semantic or academic kind of difference.
(If that’s your POV, that is. My reading comprehension is a bit iffy ATM, so apologies if this is way off.)
There is nothing new about the notion that autism is NOT primarily a social deficit. Domain-general (as opposed to social-domain-specific) models and hypotheses have been a feature of the literature for decades, as have data in this direction. The long-standing scientific argument about whether autism is or isn’t primarily defined by social deficits remains unresolved.
Cognitive and perceptive differences do seem to be a definite defining factor. The difficulty I personally has is that I have never thought to ask other people how they learn, or think, or perceive things, so it’s only recently I’m beginning to wonder just how different from the majority of people my perceptions are. I found out recently that the way I remember things is not the way that the majority of people remember. And in terms of cognition, I went through my school life struggling to grasp the concepts of long multiplication and division due to the way every teacher, in both primary and secondary schools taught it, only to discover when I left school and could work out my own methods that I was actually quite good at both, provided I used said methods and not theones prescribed by the education system.
My social difficulties (and I do have them) can be either be very striking indeed, or hardly occurring at all dependant on the environment (online being where I have the least difficulties), but the way that I think and study and work things out remains consistent.
I think that in a autistic-friendly world, there wouldn’t be any such thing as autism, because the perceptual system presently associated with autism would be so totally accepted and integrated that it would not be pathologized or even thought of.
Thanks Amanda for the “Enhanced Perceptual Functioning in Autism” paper. Thanks also for the extracts you provided. I had read the abstract but this the first time I’ve seen the full paper. Trying to understand it through all the jargon is like trying to walk through fog. I managed to struggle through part of the way before jumping to the conclusion. But in spite of all the jargon I did find the paper interesting and it has added to my knowledge of autism. I’ll read it in full when I’ve got more time.
I would be interested to hear about the experiences of autistic children raised by autistic, or ASD, parents. I imagine that this happens fairly rarely, but have you ever met or heard of such a person? I wonder if an autistic parent, if he or she had enough support to be able to parent well, would be better able to respond to the child in a way that is not frightening and better able to understand the child’s approaches.
“I imagine that this happens fairly rarely, but have you ever met or heard of such a person?”
With the caveat that, to my knowledge, I am the first person on either side of my family to have received an actual diagnosis, I will say that autistic traits show up on both sides and were/are evident in both of my parents.
“I wonder if an autistic parent, if he or she had enough support to be able to parent well, would be better able to respond to the child in a way that is not frightening and better able to understand the child’s approaches.”
Based on my experiences, yes. Also based on my experiences, this approach can be devastatingly effective (moreso than ABA, in my opinion) when applied to teach the child that any behaviors that make one appear autistic (not ‘acting normal’) are reprehensible; keeping in mind that a parent who exhibited those behaviors is much more likely to recognize them and know what they mean.
I’ve noticed that PTSD seems universal or near-universal among autistic people, and I’ve compared PTSD traits to autistic traits and there clearly is overlap. I also have a better idea of that non-extant place where abuse doesn’t happen because when I was very young, I was completely isolated from the outside world. I didn’t live in a neighborhood, so I didn’t have to deal with kids most of the time. I had an older sister who was dealing with it, and of course it affected her, and I can vividly recall being very confused by why she was nice sometimes and other times she was not. It was because she was overloaded and almost to the breaking point and I had come into our mother’s life and taken away much of the attention she needed, so I was a good scapegoat. She was very quiet and never complained, seeing it as her role in the family to keep Mom sane. My father was scary to me, but he wasn’t there during the day. I spent my days playing by myself in the yard and in my bedroom, and my mother taught me about all sorts of things. Before I was normal-verbal-age, she told me about the concept of history and why one would study it. I remember learning to read my first word in my bedroom around age 3 when I was staring at my alphabet chart. Since my father is autistic, my mom is severely ADHD and just barely meets the Asperger DSM criteria, to the point I’d say she’s BAP rather than autistic because she only has *three* traits…I did not grow up in an NT family. My father was so shut down you could never get to him emotionally. He did not and does not know himself. Both parents had Borderline Personality Disorder (my father had almost *all* the PDs in fact…he could be DXed with all but Avoidant and Anti-Social PD easily), so things were not always predictable…my mother would get upset at me and yell, I’d ask for reassurance that she still loved me despite this and she’d tell me “NO!” and I’d run crying to my room, really believing she no longer loved me…my father was scary and always threatening to ‘whap’ me which he sometimes did, but usually I could run to my mother for protection…Mom spanked me oftentimes for no reason I could understand but at least I always knew she was simply mistaken). For my early childhood, the situation was pretty good. I find it perhaps pathetic that I consider this “pretty good,” but I’m comparing it to what came later when I went to school. I was a very empathetic and caring child. Every day when my sister got off the schoolbus, I’d run to meet her. Although early on I was very scared of affection and there are many photos of me trying to get away from hugs from anyone but my mother, I was comfortable with my mother. I know that I was overloaded; I would pull my hair when she rocked me and sang me songs. But I also craved this, even though it was overloading. Eye contact was not something that was promoted in my family, although I was sometimes told, “Don’t lie,” and I had no idea that was due to lack of eye contact. I was always making up songs, and I’m fairly sure that my lack of a “significant speech delay” was because of this. My mother would play the guitar and sing and I always loved music, in fact I was making up songs at least by age 3, probably earlier, I can’t remember much before that age. My mother, sister, and I had a very good relationship, especially when my father was not there and my sister was out of school. Although I’ve mentioned a lot of trauma, I never in my life had to deal with neighborhood children, I only had to cope with them at school. School was such a big shock to me, because even though I accustomed to learning and I literally learned nothing in Kindergarten except to read the words ‘sometimes,’ and ‘elephant,’ and that for some reason the other kids did not like me and were mean to me, especially the ones that were older. There was so much that I did not know about people and neurologies that I was simply bewildered. It was only after Kindergarten that my family decided there really was something different/wrong with me, because, up until then, I didn’t seem abnormal…an autistic kid isn’t going to seem that weird to autistic parents if they have no basis of comparison.
Throughout early childhood, we went to church, and the grocery, and those sorts of places. I was always really overloaded and acted ‘like a different child’ according to my mother. I could not tolerate the alien environment that was so bright and loud and full of people. Shortly before Kindergarten, Mom enrolled me in nursery school. A couple weeks later, the teacher quit her job. I was very bored because I already knew how to read and all my colors and everything. Mom had done a very good job at getting me started academically because I really didn’t learn anything new academically until first grade when we started doing math. I am dyscalculic. So is my mother. The social environment was pretty bad. There was a kid with a deformed arm and I looked totally normal as far as I could tell, even one of my mental health workers was baffled at how such an ‘attractive child’ could be the brunt of this sort of abuse because it was usually ugly or physically abnormal kids that were treated this way, but this same man told my mother that it was almost as if I was autistic, except that I was a girl and could talk. At this stage of life, I finally began to have the really bad experiences that other autistic people seem to have since toddlerhood…inappropriate medications such as Ritalin, Haldol and Prozac, peer abuse, differential treatment from teachers, a modified form of ABA which tried, among other things, to get me to stop stimming and make eye contact, et cetera. But I would go home after school. I’d tell my mother about my day and act out scenes about how I felt about the abuse. I’d go for long walks by myself in the woods, I’d play the piano; I had my ways of expressing myself and my emotions via artistic expression. That is why I never went numb. Oh, I’ll shut down from time to time. But I know what it looks like when you’re just shut-down and masking all the time…I need look no further than my father, and I never want to be like that…a man whose only available emotion is anger. I myself almost never get angry, and when I do, it’s generally about a violation of rights, either of my own rights or those of someone else, or devaluing that person (as in Borderline PD) or in the case of false accusations. It perhaps is more of a ‘rightous indignation’ than a real, normal anger.
A lot of what you’re saying here is stuff that I’ve thought of but not necessarily talked about, though I have somewhat with my sister. She is not just Aspie but also a clinical psychologist (almost…still working on her PdH, currently at an internship). She realized I was autistic a long time before she realized that she was. Despite diagnosing dozens and dozens of other people with autism, running social groups of autistic teenagers, and all those things, she had to come and ask *me* if I thought she was autistic. We went over the DSM and determined she *almost* meets the autism criteria the way my mother *almost* meets the Asperger criteria. Which is funny, because I meet the autism criteria the same way my sister meets the asperger criteria, the same way my mother meets the ADHD criteria…my *family* is an autism spectrum! Not that I am all hung up on DSM criteria in defining a person’s neurology, however, one has to have some sort of yardstick to validate one’s self-diagnosis, and that’s what I choose, although I can think of no better diagnostic tool than showing up at Autreat and seeing if you feel weirder than ever or more normal than you could have possibly imagined. I know it’s an imperfect tool as some autistic people do feel alienated there, but it’s the best way I know…that or some other group of autistics.
It’s amazing what you said about the utter obliviousness, even captured on film, that parents who buy into the autism industry can have. My own mother, despite all her many flaws, did and does love me, and when she listened to herself in terms of how I was and what I needed, she was never wrong; it was only when she listened to doctors or her mother-in-law or some other outside force that she would get dumb ideas and do the wrong thing. I cannot possibly count how many times she spanked me for being maniuplative, and this was very painful because she would use a yardstick and it would break several times while she was spanking me. This was much worse than it should have been and beforehand I’d always cry and beg her not to spank me, which she saw as manipulation, but it was really due to sensory hypersensitivity. It was much more painful and traumatic than it would’ve been had I been NT. The really unfortunate thing about this is that I was always utterly baffled and I had no idea how to manipulate people at all, but the outside world could not explain my, for example, insistence on sameness, on not changing things, ‘nonfunction’ rituals and routines in any way other than to say I was just trying to manipulate people. Even the “Do you love me, Mommy?” when she yelled at me was interpreted as manipulation, not as fear and a need for reassurance, and I think it’s pretty obvious that, when someone yells at me, I think they hate me unless they let me know that they are only upset for a little while, and not forever.
School was, for me, like most autistics, hell. I was probably the smartest kid in the school, but I was under so much stress and the learning style was wrong and I sometimes even got D’s, though usually I had an ABC report card. It wasn’t until college upper-level courses that I could get a 4.0 GPA. The Special Ed classroom I was in one year was even worse. And the worst of all was the summer camp they made me go to for 10 days. When I left, I could only speak in delayed echolalia…I did not communicate. I also stimming so much I had bald spots on my head for most of the next year and my fingers bled from how much I bit my nails. I had never been what anyone might call ‘low-functioning’ before, and, of all things, the summer camp gave me the ‘most improved’ ribbon. I was much better behaved and I wasn’t asking questions anymore. Never mind the state they left me in that took me about 2 years to get back out of…I was ‘most improved.’ I’ve even read the document that explained the camp’s program, and I can’t imagine a worse situation in which they weren’t trying to kill you. For example, if I asked a question, to ignore me and praise other girls until I finally gave up and went back to what I was doing…was ‘keeping me on-task.’ Or, invalidation, and getting used to the idea that my words were meaningless, hence I should not bother with them. Endless repition of camp songs and rhymes was encouraged, so that’s all I could say by the time I left. I could think, “Hi, Mom,” but I was utterly aloof. I heard her say my name, I looked at her, but I did not walk towards her. I did not wave. I did not say a word. I continued to walk in a diagonal away from her as I had been when she got there. With how extremely affectionate I had been all my life, this was a huge shock. I had the traits described in many autistic children…at age 9, all of a sudden I acted “classically autistic.” I guess this is what they mean by “regression,” when their kid was acting normal and then around the MMR age they stopped. Maybe what this is, is the kid reacting to an environment like my summer camp…which makes me wonder if we turn out better when we’re in a more chaotic, rather than structed, environment. On the one hand, my home was stable…two parents, steady income, food, toys, education, decor never changed…on the other, there was no rigidity in the structure. Wake up, eat, play, get scared of the airplane on its daily flight overhead, run to the house, eat lunch, play, learn at some point, maybe go to Grandma’s, Daddy gets home, get quiet and avoid him, eat dinner, watch TV, go to bed. I guess in some ways it was structured, but only insofar as I chose to structure it.
I’d like to see what happens if you take 2 autistic parents who are self-accepting and live out in the middle of nowhere like mine did, only with no weird psychiatric conditions. Assuming they have at least one autistic kid, and preferable 2 so they have someone to interact with…keep them there…homeschool them, keep them away from anything that could cause them to have to deal with the way the world treats autistic people…and check out what they’re like. It’s not truly an experiment on people, so much as it is taking everything we know is bad for autistic children and removing it from their lives, and insodoing, find out exactly how we are naturally, if we were to live in our own culture.
I remember talking to a man from India about his life. He came to a place where he was treated differently from others. But he had a choice. He could go back to India. I can’t go back to the homeland of autistic people, because we don’t have one. We are in all cultures, but we have no place that we can go to that is all autism-friendly, and there *should* be, and one really ought to make a study of the children in such a community as they grow up…find out what they’re like. Find out what it’s like for multiple generations to live in an autistic culture, and truly separate the autism from the PTSD.
What you wrote was very good and I meant to reply to it more but I know this is already long and my wrist hurts, so I think this’ll have to be the end.
My autistic boy has shown me affection from so very early on. Not always overtly the way I expected it: but I could always READ him so. For the most part, I always considered my role in giving him affection and showing him love that I should be a safe haven for him. That if it didn’t seem to reinforce him and strengthen him, it wasn’t affection (no matter what I thought it was). No matter what else happened to him during the day, who else he noticed or didn’t notice or avoided or screeched at, he knew that with ME what he needed would be given.
He did back into me. I let him, and kissed the back of his little head. I read things over and over and over in precisely the same way, with identical inflections. I learned what patterns he liked, and we would do the patterns together. i did things — IDENTICALLY — every day for him because I could see how much it meant to him to have it done that way. And i could see on his face, when it was done right, how much he relied upon me and loved me, even if he never said it. This was when he was quite young, mind you. Now he has said that he loves me perhaps a half-dozen times in his life. It is always very special to me when he says it, because he is accomodating me. But I know how he feels about me because he relies on me, because he seeks me out to help him make sense of new things, and because he trusts me to protect him and to help him through life.
My son smiles all the time. He has such a sunny disposition. Between me and his sister, who likewise can understand how he ticks and who helps him translate between how he thinks and how we do, he feels pretty safe and happy a lot of the time. He loves his sister so.
My job is to give him the strength to keep coming back to the world, even if it hurts. I want him to get to define what happiness means to him, and have the tools to get that happiness. If that doesn’t fit some social mold, screw it. We’re working with him on a host of things, mind you, but I fundamentally accept this child as he is — he’s not less, he’s himself. It’s hard, because we lack that common language of the unsaid in some regards. I have to teach him the predominant language, because I want him to be able to use it when he has to. But in our home, with me, he can be exactly what he is and it is ok. I will speak his language as I can, and he will speak mine as he can.
It hurts my heart that the world will never see my baby as I do: perfect. Handling that aspect of it is extraordinarily hard and draining. But for all the reasons that you cite, I am working very hard to try and keep the world’s opinion from being paramount to how he judges himself.
This definitely doesn’t just happen to autistic people. My experiences of being bullied weren’t as violent as others I’ve read about, and I’m pretty sure I don’t remember all of them, but I knew they were there, and my mother once told me that I used to come home from school and cry and cry because nobody liked me and I didn’t have any friends; apparently, I was a very sad little girl. My parents had no clue how to help me, but I doubt they could have, really.
I am in no way a complete & integrated human being yet. I’m getting there, though progress is slow. At least I finally figured out that I’d fractured myself into three pieces – once when I was in elementary school (as early as six years old) and once when I was a teenager (I woke up one morning when I was thirteen and decided I was dead). This splitting (I believe the “official” DSM name would be some form of dissociative disorder) of myself resulted in a lot of emotional disconnect. I basically turned myself off so things wouldn’t hurt so much.
As time has gone on, I’ve come to see that I did that to myself, and why I did it. I can see how it’s hurt me, and what I am still struggling with now, as an adult. My depression, I am sure, is due in part to my dissociation. My lack of social skills, my difficulties dealing with extreme emotion in an appropriate manner, and my high levels of anxiety are also probably due to my dissociation.
I’m afraid of love, which I am certain is due to my dissociation. I don’t know how to respond to the love others show me, and I am clueless as to how to show love to others. (About the only thing I’m certain of is that sex isn’t it.) Needless to say, being afraid of love has put a bit of a damper on my relationship with God, never mind other people.
I suppose, if my mother had homeschooled me as she’d wanted to do (she didn’t know there was help available, so we all went to public school), some of those scars and situations that caused me to retreat into myself might have been avoided. But I was lucky insofar as my parents didn’t force me to try to be someone I wasn’t – it was the rest of the world that wanted me to be perfectly symmetrical. Which is definitely not something anyone in my family has been or ever will be.
andreashettle,
Thanks for pointing out the “language of love” concept. I’d thought about this but only as it applies to me and my NT boyfriend. I hadn’t thought of it as a way of understanding children’s behavior or the behavior of people with different neural configurations.
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It’s like how students in public school (Special Ed), will be claimed to not have social skills or be anti-social. Wouldn’t any NT having to undergo the amount of bullying we did, day after day, become anti-social? All they have to do is look at the school shootings, presumably done by NTs. Although some people like to claim the shooters are Autistic, since I suppose bullies only exclusively target Autistic children. No?, hmm interesting.
While my (NT) mom is completely supportive of me and has never had a desire to make me non-autistic, there have been a number of times when she would go off into another room, crying about how I didn’t love her, just saw her like an object, and this was 3 or 4 years before diagnosis. Her assessments always puzzled me, and later on I created the sentences to use to explain to her that I have trouble finding where she comes from, and that these things are not at all true.
Interestingly enough, my dad, who is likely also on the spectrum, I rarely had tantrums when he was the one home, which was how it was for me in the early years (my dad was the one who left work to take care of me, rather than my mom). But when my mom was home, things were really different. It also did not help that she had different ways of preparing foods and meals than my dad, and I needed things to be EXACTLY the same. So in this way she always felt inferior, which makes me sad, as my upsetness was a sensory reaction to having the sandwich cut horizontally rather than diagnoally, and it had no value judgment attached to it, it just made me sad to see the sandwich that way.
Wow.
I remember, I think upsetting my grandmother because she knew I wanted my sandwiches in triangles, but she made four triangles instead of two.
(I began to become more wary of my two-triangle approach when the corner of a grilled-chese sandwich somehow triggered my gag reflex. I didn’t know what gagging was, I just felt like the corner attacked me, and I quit eating the corners.)
“Also, I remember reading once about some syndrome (I forget the name of it) that, among other things, means that a girl will tend to be small for their age. So when they’re 8 or whatever, they may LOOK like they’re 6 or whatever.”
Turner Syndrome, maybe? Turner girls have only one X chromosome in some or all of their cells, and one of the traits is being quite short. But of course any short stature condition, particularly if they don’t have noticeably odd proportions, can result in being treated that way.
I wonder if children from one of the African races that are typically very short, if interracially adopted, are prone to being treated younger than they are?
I also know of a condition, Sotos Syndrome, where they’re unusually big for their age and cognitively disabled. Anyway, Sotos kids are described as being prone to aggressive behavior, and some have suggested that they aren’t really much more aggressive than other disabled kids or kids at whatever ‘developmental level’ they’re considered to be at, it just seems more of a problem because they’re big. For example, a normal-sized two year old and a 6 year old who looks 10, tantrumming in the same way for the same reason, are likely to be perceived quite differently.
“I know I’ve sometimes done similar things. I don’t normally go to the same lengths as she has, but if I’m in a context where it’s important for a hearing person to really GET that I’M DEAF (and need certain adaptations), and if I’m not sure they will understand that “deaf” does NOT mean “total inability to hear” (contrary to what a lot of hearing people seem to think, deaf SIMPLY means, “does not hear well enough to talk on the phone” — but this still leaves a WIDE range of possible hearing levels, even without mentioning hard of hearing people who CAN talk on the phone), then sometimes I will find myself automatically supressing my reactions to sound as a way of reinforcing other people’s understanding that, yes, I’m deaf, I can’t hear, I need appropriate accommodations. So I know from first hand experience the ways that one can instinctively learn to fit into other people’s stereotypical expectations even without intending to, as a kind of survival skill to ensure that you get the accommodations you need. It makes sense that autistic people would respond the same way.”
I can relate to this. When I’m extremely tired, I may be inertial to the point of being unable to get up and get my dinner, yet I can get up to go to the bathroom (or get something to read if I know exactly where it is). But after convincing my parents to get me my dinner because I’m too exhausted to get up, I don’t want them to see me walking to the bathroom, so if possible I try to go when they can’t see me.
“I would be interested to hear about the experiences of autistic children raised by autistic, or ASD, parents. I imagine that this happens fairly rarely, but have you ever met or heard of such a person? I wonder if an autistic parent, if he or she had enough support to be able to parent well, would be better able to respond to the child in a way that is not frightening and better able to understand the child’s approaches.”
My father is probably autistic, but he’s done a lot to act more normal, and shut down his emotions probably more than many autistics because he not only grew up weird but was also in a really dysfunctional family and abused quite a bit. In fact he told me that he used to never feel any emotion at all, and during counseling he started to feel anger for the first time (which his counselor dismissed because ‘it’s easy for men to feel angry’).
I am less socially disabled than many autistics, although how much that is due to a) my natural neurological makeup, b) my father being autistic and c) having been abused myself (by other victims of one of my father’s abusers) which tends to cause people to become hyperalert to signals of negative emotions (and I am better at detecting anger than anything else, to the point of mistaking other things for anger).
“I’ve noticed that PTSD seems universal or near-universal among autistic people, and I’ve compared PTSD traits to autistic traits and there clearly is overlap.”
It seems to me that there’s even more overlap with Reactive Attachment Disorder. It’s closely related to PTSD but specifically due to having early childhood experiences that make it very hard to form attachments to others (either parents aren’t loving enough or they’re not consistent, either in behavior or in presence – eg foster care). Anyway, RAD kids can act in some very autistic ways, especially if they were institutionalized. I suspect some of the traits shared between RAD and autistic kids may actually be for the same reasons.
“And one thing I learned from that is that not everything that I’ve attributed, and seen others attribute, to autism, necessarily is.”
I had a similar experience a few weeks ago. I am taking a basic course in counselling skills, the first step on a five-year journey towards accreditation as a professional counsellor. The first thing that the tutor made us do was come out from behind our desks and sit in a circle in the centre of the room. He explained that all our classes would be conducted like this.
I felt very uncomfortable and anxious in this position. I struggle to make eye contact and I dislike being in a group, things that I have always attributed to my autism. The Disability Resource Centre at my university requested the tutors leading my seminars not to position the students round a table, but to have us facing the front. This was done so that I could participate without getting too overwhelmed by the sight of all those faces.
At the end of our first counselling class, we were asked to share what had been the most difficult aspect of the class for us. I was astonished to hear the other students telling the tutor that being in the circle had made them uncomfortable too. One woman said that it had made her so self-conscious that her heart rate had gone up and her palms had started to sweat. Another said that it had made it hard for her to concentrate. Neither of these women are autistic, yet they were articulating my own experience.
Vicky:
Your comment here reminds me of another blogger who has observed that sometimes a person with disabilities who is perceived as having a supposedly “extreme” or “unusual” need may actually be indicative of a need that many other people have–just in a more mild form. So an accommodation that helps a person with certain disabilities (because they have an absolute NEED for that accommodation) could also make things more comfortable for some other people also.
Ettina talks about this point in these two blog posts:
http://abnormaldiversity.blogspot.com/2008/09/social-value-of-demand-avoidance.html
http://abnormaldiversity.blogspot.com/2008/10/special-accomodations-and-proving.html
“I can feel parts of myself internally that I couldn’t before, and I can now perceive parts of other people that I couldn’t before because I was too busy denying that they existed in myself.”
Learning a lot from you right now… thanks :)
Bullet,
I would say that I had a similar experience to you only that it was at opposite age ranges, eg that I was much more functional in secondary school than primary school. 4th-6th grade was the worst in general – constant, constant constant bullying at school, piece of shit teachers who didn’t care, pain from the divorce between my parents and some sexual advances(in 6th grade) from my mom’s new sociopathic boyfriend(who also worked at my school but wasn’t my teacher), etc…. Around this time I stopped caring what my classmates thought and would just cut myself in the middle of class…
Anyway, my mom broke up with her bf, I transferred to a new school that had a much more tolerant environment, and I got a new chance at life. I started to make a few friends in the bigger schools because I could both hide from the bullies and make friends in the nerdier extracurricular clubs. By high school I wasn’t even a target of bullies. I was much less obvious at, say, 16 than 9 or 12 because a lot of what looked like autism was really symptomatic of multiple traumas.
What “research” has been done to show that autistic kids show attachment to their parents after all? I am not skeptical, I just want to know.
Also, I just heard that in some preschools and other public institutions for little kids, there’s a practice of forcing the kids to have a group hug every day (to teach that human contact is fun and pleasurable). That’s horrible-I never would have put up with that if it had happened to me! From what I can remember, a 6-year-old pynchonfangirl would have physically attacked both the kids attempting to hug me, and the teacher when she called for someone to take me out of the room.
I definitely can empathize with this. I have been told that ‘you’re not autistic’ because I am very affectionate and loving with my family and friends. I like very brief hugs (and resent the fact that my NT sister hates them) and kisses, as well as saying ‘I love you’- but ordinary physical touching is my most consistent way of saying ‘I love you’ (eg cuddling on the couch). I also know that if I hadn’t grown up in the same hostile school environment, I wouldn’t be so harsh and/or afraid of people my own age. A lot of my responses to people aren’t from autism, but experience- for instance, I never let any stranger know anything about me (more than necessary), because I’ve been conditioned by bullying to react as little as possible.