There are autistics all over the IQ range, but the average intelligence for autistics is higher than for the general population. On not only that basis, I found the blog post “Understanding Very, Very Smart People” on samlpc.com quite interesting. Even if you’re not in the high-IQ end of the spectrum, I found many of the problems he describes surprisingly relatable to the problems that many young autistics struggle with. I recommend giving it a read.
Autism is the work
Imagine you’re the judge in a dance competition. One of the dancers is on a higher level than the others. She moves with grace and fluidity, and she makes almost no mistakes. You almost can’t hear the thud when she hits the ground after a jump, you almost can’t see the sweat on her brow. She makes it look easy. So you disqualify her. Because if it looks easy, it must be easy, and you don’t want to commend a dancer who hasn’t put any work into it.
That’s what you do when you say “You’re not autistic, you’re just a bit peculiar.”
Autism is not the result. Autism is the work.
Letter to Tony Attwood
This post doesn’t require having read the book I reference or being familiar with Tony Attwood’s work – but if you’re not familiar with the lingo and concepts surrounding autism, I suggest consulting this post first so that words like ‘aspie’ and ‘NT’ don’t halt your reading.
I’m ambivalent, leaning towards negative, about Tony Attwood’s work on Asperger’s Syndrome. My positive feelings are based mainly in the fact that he genuinely seems to try his best to help aspies, and that he places great emphasis to non-autistic people on the notion that we’re different, not disabled. As stigmatized as AS is, that’s not a goes-without-saying perspective, and it’s very important for the world’s leading expert on the condition to say it. However, he doesn’t seem to practice what he preaches. His viewpoints and approaches to specific situations seem designed to portray aspies as innately deficient and incompetent and make them behave in a way that’s convenient to NT’s without taking into account the aspie’s perspective and needs. A “this person is broken and must be fixed” approach which places no real responsibility for miscommunications on NT’s.
So I wrote him a letter after I had read his book The Complete Guide to Asperger’s Syndrome.
He actually responded – twice. But he didn’t answer any of my questions or criticisms. He just told me that since he lived far away from me, he recommended that I take it up with a psychologist in my area – he even sent me her name and e-mail address. I answered that I wasn’t looking for therapy, I was responding to his book with some criticisms – and he basically just wrote the same thing back to me again – that I should try to find a therapist closer to me.
That way of responding is a perfect example of what I find questionable about his methods.
This is the letter I wrote to him.
Dear Tony Attwood,
I’m writing regarding your book ‘The Complete Guide to Asperger’s Syndrome’. I was diagnosed with AS this past summer (at the age of 26), and being AS, the natural consequence of this has been to research the topic with all the fervor of a ‘special interest’. 🙂 I’m sorry for the length of this letter – I really have tried to make it as short as possible, but the book just gives me so much to respond to.
I want to thank you for such a comprehensive book about such a recently discovered condition – your work is so important to aspies everywhere, and I’m glad to see a psychologist approach ‘us’ with the respect for the individual, and for our strengths, that I unfortunately find all too rare in the psychiatric system.
However, you draw some conclusions in the book about people with AS that don’t ring true to my own experiences, and I suspect they may be based on misunderstandings of why aspies do certain things. Especially since the things you write that I find problematic echo wrongful assumptions about me that I’ve heard from the adults around me throughout my childhood.
My biggest concern is the idea that people with Asperger’s Syndrome lack theory of mind. I was only able to get hold of a Danish translation of the book, so I apologize for having to translate from that back into English to quote you, but I think the gist of it is intact:
“Sometimes a person with Asperger’s Syndrome can be criticized for being tactless or socially naive in a conversation – the person may say something which is true, but which hurts other people’s feelings or which isn’t appropriate in the context. From early childhood, normal children adapt the topics of their conversations to who they’re talking to. This adaptation is based on an understanding of social hierarchies and conventions and the necessity of holding back certain comments out of consideration for the other person’s thoughts and feelings. Because of reduced or delayed ability to theory of mind (see chapter 5), the conversation can be a social ‘mine field’, where there will be a risk that the conversational partner will be hurt by comments, criticism, and value judgments from the person with Asperger’s Syndrome. However, this person mostly doesn’t mean to offend, but is simply stating their opinion and is unfortunately more faithful to facts and truth than to others’ emotions.
Reduced or delayed ability to theory of mind can also explain another trait in pragmatic language difficulties. It’s a matter of the person with Asperger’s Syndrome being unsure of what the other person knows or wants to know. When a normal child’s mother asks, ‘What happened in school today?’, the child has a certain idea of what the mother wants to know. But the child with Asperger’s Syndrome can be completely at a loss, because the question isn’t exact enough. Does she want to know who I talked to, what I learned, where I went, who I played with, if I was in a good mood, if someone teased me, or what the teacher said and did? The reaction can be to completely avoid answering or to engage in a detailed description of the day in the hope that some of what is said will be the right answer.” (p. 263 in Danish version, Language)
Whenever I’ve come across a description in your book of how those with AS lack theory of mind, I’m struck by how any miscommunication between an NT and an aspie is always assumed to stem from the aspie’s lack of theory of mind and their lack of comprehension of ‘people as such’.
However, if I look at the situation from the perspective of the aspie, I have just as much reason to assume that neurotypical people lack theory of mind.
For instance, the straightforwardness you describe in the quote above is something I need from the people around me. If I ask the classic question “Do I look fat in this dress?”, I would not consider the answer “Yes, you do” to be rude, but I would consider it rude if the person thought this, but refrained from saying it out of conventional politeness. If I find out later that a friend has refrained from giving me a criticism because they ‘didn’t want to hurt my feelings’, I feel very hurt and betrayed. Knowing that people around me may be saying one thing, but thinking another, feels uncanny and unsafe, so I’ve gravitated towards friendships with others who feel the same way (and may be undiagnosed aspies).
How, then, is it that when I give to a neurotypical person what I would like for them to give to me, I lack theory of mind – yet their offense and their inability to understand that I’m acting out of respect doesn’t to an equal amount show that they lack theory of mind? We seem to both be equally lacking in understanding.
I haven’t been able to find the exact studies that the conclusion that aspies have an underdeveloped theory of mind is based on. I did find a reference to the ‘Sally Anne’ test in the text “A discussion about Theory of Mind: From an Autistic Perspective” – http://main.autistics.org/node/26 – it presents some interesting ideas about how the Sally Anne test may not be sufficient to determine theory of mind.
Can you tell me which other studies the idea is based on?
Even without full knowledge of the research in this area, I still suspect it has been biased towards assuming that whenever there is miscommunication between NTs and aspies, it’s due to some kind of social retardation in the aspie. After all, NTs have a bunch of other NTs around them to confirm that they’re right and the aspie is wrong. You write:
“From early childhood, normal children adapt the topics of their conversations to who they’re talking to. This adaptation is based on an understanding of social hierarchies and conventions and the necessity of holding back certain comments out of consideration for the other person’s thoughts and feelings.”
But have you considered the distinction between people-as-such and neurotypical people? You seem to use those two concepts interchangeably throughout the book as if they’re the same thing (and if that’s true, it means aspies aren’t people!). Has any research been done comparing how aspies socialize with one another vs. how they socialize with neurotypical people? It seems likely that in a room full of aspies where only one NT was present, it would suddenly be the NT who seemed socially retarded and the aspies who seemed socially adept. I base this assumption on this quote from the book “Women from another planet?”:
“Among ourselves we can communicate well ‘live’ too. Not bound by NT social protocol, we tend to talk very directly, relying on words (rather than nonverbal cues), and content (rather than personality), with a distinctive rhythm whereby we tend to say the whole of what we want to convey as a unit then wait for the other’s response. Rather than smalltalk, either meaningful conversation or comfortable silence generally prevails.
It can be a sobering experience for an NT to attend an event where AS style prevails. Here, it might be the NT who seems odd or rude, with their characteristic interruptions, trivial remarks, constant changes of topic, bizzare habit of staring into the eyes, excessive face and body movements, and tedious NT difficulty appreciating and coping with silence or solitude. It might be the NT who appears to suffer a triad of impairments.” (P. 29)
If this is true, it means that we have every bit as good an innate capacity for theory of mind (and other social skills) as the average person. We just don’t get to show it because we spend our lives surrounded by people who are completely unlike us. Imagine how it would be to grow up a neurotypical person in a world full of aspies, a society adapted to the needs of autistic people where acting like an NT was unheard of. How ‘impaired’ would this person seem? Yet, does that mean you lack theory of mind?
Even if some aspies do have impaired/delayed theory of mind, one still has to consider whether this is an inborn quality, or if it is a consequence of living in a world of people who aren’t like oneself. Aspies have very little opportunity to find common ground and resonate with NTs because of our different interests and personalities, so isn’t that bound to affect how well a person is generally able to relate to others? We don’t get the practice at seeing ourselves reflected in others that NTs get growing up.
I’m not just sending you these objections for the sake of argument. I’m doing it because I find a lot of what you write in the book unintentionally hurtful. Take the following:
“Because of reduced or delayed ability to theory of mind (see chapter 5), the conversation can be a social ‘mine field’, where there will be a risk that the conversational partner will be hurt by comments, criticism, and value judgments from the person with Asperger’s Syndrome. However, this person mostly doesn’t mean to offend, but is simply stating their opinion and is unfortunately more faithful to facts and truth than to others’ emotions.”
The idea of conversation as a ‘social minefield’ resonates strongly with me. However, the conclusion at the beginning and end doesn’t at all resonate with how I function emotionally and socially – but it does sound very much like what I’ve been told about myself by the NTs around me when I was a child. It was assumed that there were just things I cared more about than others’ emotions. I don’t find this to be true – at least not more true for me than for the average NT. But I did feel that my needs and desires were never met, often ridiculed, and didn’t seem important to anyone around me, because they weren’t the same needs and desires that they had. To me, NTs have always seemed like the ones who didn’t care about others’ emotions! And I see no reason why this shouldn’t be as objectively true as the opposite. Let me try to qualify.
Growing up, I was constantly called selfish, rude, unempathetic (= ‘lacking capacity for theory of mind’), and narcissistic, because of (1) not being able to figure out the social rules of the (NT) people around me, and (2) desperate attempts to express myself in a world that didn’t acknowledge my personality – my existance as a real person. I can very much relate to Jonathan Hanna, who so eloquently said, “I grew up to think I was an evil young man”:
One of the things that made my family and teachers assume I was self-centered was the fact that I would never ask what they thought about something, but would simply state what I thought. After years of practicing asking questions in conversations to appear considerate, I was talking to a friend – who I had a great natural rapport with – about politeness. She told me she always felt intrusive asking others how they felt, because she often felt put-on-the-spot when someone asked her directly – so she would instead share what she thought about something and wait for the other person to take the hint that it was a request to hear what they thought.
I realized this was one of the reasons we had such a great rapport: I got the hint, but neurotypical people almost never did! When she told me this, I realized the reason why it had been so difficult for me to learn to ask people directly what they thought about something had not been that I was too selfish to care – but that I felt rude and intrusive asking directly and therefore had this instinctive embarrassment to fight when trying to ask – while at the same time answering others’ questions out of politeness, even though it often felt very “I didn’t expect the Spanish Inquisition”. Compare this to the notion that aspies are way too straightforward in conversation!
Could it be that there is every bit as much pragmatic conversation going on when an aspie talks as when an NT talks, but that many aspects of AS politeness, consideration, and empathy are ‘missed’ by family, school, and professionals, because NTs don’t have the wiring necessary to discover those parts of us? You might say NTs are too socially retarded and have too impaired theory of mind to understand these aspects of conversation. 😉
I think the ‘rudeness’ of aspies is based on the same kind of assuming-others-want-what-you-want that neurotypical people relate to their surroundings with, and it makes me feel hurt and frustrated that by basically just doing the same thing as everybody else, we earn the label ‘socially impaired’.
I think this label can make it unnecessarily hard for aspie children to gain the social skills you’ve developed methods for teaching them. I quote from your book:
“The person with Asperger’s Syndrome will need guidance in the art of talking to others.”
Sure, but exactly which ‘others’ are we talking about here? Are we also talking about my friend who would have felt embarrassed and pushed away if I had addressed her Spanish-Inquisition-style, like I had been taught by NTs to do? If no distinction is made between (other) aspies and NTs, don’t you run the risk of teaching aspies to push away those they can relate to in an effort to appear polite and considerate in NT company? Is it necessary to teach them that, rather than teach them that “some people like when you talk to them in this way” – and include in the course methods for testing whether they’re talking to someone more aspie or someone more NT, adjusting their conversation style to match the other’s personality and needs? Since many aspies feel alone on this planet, I think it’s very important to leave room for not accidentally socializing oneself out of the opportunity to find like-minded friends (and oneself!).
“Different shortcomings can occur depending on the context. For instance, the child may be capable of having a reasonably good conversation with an adult, but will make big mistakes in pragmatic aspects of language when playing with friends, and it may not know when to be formal and informal. A teenager with Asperger’s Syndrome may not know the everyday language of other youths and the topics they take an interest in. An adult may be capable of having conversations about practical circumstances, but has great difficulties with social chit-chat, or what to say when courting someone else.
One can appeal to the child’s genuine interest in others and its desire to be a good friend and explain that it’s kind and friendly to sometimes talk about what others want to talk about.” (P. 265, Language)
Reading this, I imagine what it would have been like if I had been diagnosed with AS as a child and put in a situation where a psychologist had this approach to me.
I remember vividly that whenever I would go into one of my rants about an obsession of mine, those around me would ignore me, tell me off for being rude, or react in some other negative way. This would make my rants even longer and more persistent, because I longed for someone to take an interest or at least let me know that what I was saying had been heard by someone else. I longed to feel like I existed to others.
I actually think that my tendency to rant, rather than being inborn, stems from the fact that I never felt rapport with those around me and felt ignored. I felt like I was talking into a vacuum every time I said something that mattered to me, and so gradually what I said would become more drawn-out, as a way of compensating for my loneliness with the endless flow of my own words.
When others would then react in a negative way or ignore me, the old monkey-see-monkey-do kicked in, so when they were talking about something they cared about, I would of course not pay attention. This earned me the label of ‘selfish’, even though I was simply reciprocating. It became a vicious circle of “if you don’t care about me, I don’t care about you,” and I took on a me-against-the-world perspective and dug myself deeper and deeper into narcissism as a defense mechanism. Deep down, I cared very much about others and wanted so badly to relate to them and take care of them – but you just can’t give what you’ve never gotten.
On the basis of this, can you imagine how ironic, condescending, and selfish it would have seemed to me if an adult had told me, “It’s kind and friendly to sometimes talk about what others want to talk about”? My response, if I had bothered to respond at all, would undoubtedly had been “No shit, Sherlock! Then I guess you should try it sometime.” I wouldn’t have had any extra emotional resources in me to pretend to care about ‘normal’ things before my own need for others to care about things I cared about had been met.
What I feel you’re missing in the (otherwise very empathetic) paragraph I quoted above is a big red text in all-caps that comes before it and states that the important first step in social stories is to ensure that the child learning these stories is experiencing the same positive (and quite demanding!) treatment from others. I.e. teaching the NTs around the child to do the same thing you’re asking him/her to do for them. It’s only fair.
In my own experience, explaining to me what I’m supposed to do in a social situation has had little to no effect – but showing it by example has changed my behavior almost instantly, to my great surprise and joy. For instance, when a friend who doesn’t care at all about a great ‘obsession’ of mine realizes I do, and therefore listens attentively to my rants and tries to relate it to something they feel the same way about, I instantly start caring about something they care about that I took no interest in before. It’s almost like that friend has handed me a physical thing that I can then modify slightly and hand straight back to him/her – but without losing it. It’s a cake you can have and give to others to eat, too. However, what you’re describing seems more to me like giving the child the recipe, but not the ingredients – the information, but not the energy.
(This is of course only true if the child is as emotionally depleted as I was. It seems to me from the aspie blogs and books I’ve read that many aspies are, and that they therefore can’t take the first step in positive interaction.)
Let me go back to another part of the quote:
“For instance, the child may be capable of having a reasonably good conversation with an adult, but will make big mistakes in pragmatic aspects of language when playing with friends, and it may not know when to be formal and informal.”
Again I think back on my own childhood experiences. I can best compare the way I felt to if I had been a 40-year-old dwarf, and all the adults around me had decided that because dwarves are just as short as children, they are children. I was not a child, or at least I was more like an NT adult than like a 10-year-old NT child when I was 10. Imagine an adult dwarf is put in the fourth grade. This person will have significant difficulties relating to the children in that class, since she isn’t a child, but will find conversation with the teacher easier and more satisfying. Yet, the teacher, believing the dwarf to be a child, refuses to speak to her in an adult way and talks down to her as if she doesn’t know things she knows. When other adults are present, they refuse to let the dwarf into the conversation, saying, “Not now, the grown-ups are talking,” regardless of how interesting her input might be. The dwarf is put in therapy and told that she, although very smart, is socially underdeveloped and needs to learn to relate to her ‘peers’. Would you expect the dwarf to accept that premise? This may sound melodramatic, but I would expect her to go mad. I did, a little bit.
For therapy involving social stories to be effective on me when I was (let’s just stick with) 10, it would have had to include an understanding of me as someone more mature than my age peers. Someone who was forced to be in an environment suited for people whose development (both emotional and intellectual) was at least three or four years behind mine. I would have never accepted the premise that I felt out of place simply because I didn’t understand something others understood just fine, or because I was immature – at least not unless they accepted the premise that I also understood something they didn’t understand, that they were immature in other ways, and that this was part of the problem.
What would have been acceptable for me is if the premise had been, “You can’t relate to these children around you, and sometimes not even the adults either – but you have to stay in the school system to learn the things you’ll need when you grow up – therefore, we’ve set up this course to help you learn the language of the natives.” This wouldn’t have infringed on my perspective of myself and the world around me in the way that the idea of me being socially underdeveloped did. It would have allowed me to have my own identity that fit with what I knew and felt.
I probably would have never accepted the idea that I was not allowed to talk to adults like an adult, though. I still don’t. There are generally a lot of NT taboos that I find silly, and that it’s very hard for me to respect if they’re presented as objective fact. If they’re presented as personal needs, though, I have no problem respecting them. Because then my perspective on the world isn’t implicitly being called nonexistent.
It generally seems to me that all the things that NTs say about aspies can from an aspie perspective just as well be said about NTs. For instance, the idea that aspies have ‘special interests’ that are abnormally intensively pursued. In layman’s terms, that aspies are obsessive. From an aspie perspective, this appears to hold true for NTs – they tend to be obsessed with socializing, getting drunk, making the right impression on people, how much they weigh, etc. It’s said that aspies require very rigid rules and regulations rather than understanding the principles behind things and working from that understanding – yet I find neurotypical people to require much more rigid rules for social interaction and etiquette than I do, and when I ask for clearly specified rules, it’s merely because it seems to be compulsively important to NTs that I follow them. It’s said that aspies have delayed development in some areas, but since NTs tend to be about three to four times slower than me at learning new skills, I could just as easily say that back. Et cetera.
All these impressions I’ve gotten of NTs as obsessive, rigid, retarded in certain areas etc. have made me consider them rude, selfish, narcissistic – all the adjectives NTs have often thrown at me. But realizing that the communication difficulties between NTs and aspies often make us look the same to each other – and create the same emotions of frustration, anger etc. – is helping me be more compassionate, because I’m starting to find a way to put myself in, for instance, my mother’s shoes, and see how her predicament has sometimes been the same as mine, but in reverse. That she wasn’t being selfish and mean, but was trying to love me, just like I was trying to love her and then to my great surprise told I was doing something malicious.
I guess I’m writing you to ask if this idea of the situation looking the same from both perspectives has at all been considered in your practice – or anyone else’s? Is the aspie’s perspective ever really respected on the same level as that of the NT, or is it just respected as ‘the reality of the person with Asperger’s Syndrome’? Because also here it seems to me there’s a big difference in a small distinction: Whether my perspective in a conflict with an NT is considered (1) one half of a situation where ‘both are right’, or (2) ‘the perspective of the abnormal person who needs to learn the correct perspective’, makes a huge difference in how well I can handle the conflict – and whether I would even want to handle the conflict at all. Does this distinction make sense to you?
Thank you so much for reading through my lengthy letter. 🙂 I hope you’ve found something interesting in it, and I look forward to your reply.
All the best,
I’ve been on online dating sites for stretches of time in a few different periods of my life. I’ve never had much luck there. It’s easy enough to find a sexual partner in those venues, especially if you’re not picky – but actual romantic, enjoyable dating is harder to come by. I’m on a mailing list called the ListServe, and about a month ago, the creator of opendating.co.uk (opening soon, and ‘seems legit’, as they say, without the usual spam’n’scam that’s so often an integral part of the site’s workings) sent out a message asking for people’s experiences with online dating, to give him a sense of what users would want him to focus on in creating the site. My reply has a lot to do not just with autism, but with any type of ‘quirks’ that can make dating difficult – so I thought I’d post a blog-friendly version of it here.
My frustration over online dating sites is that a lot of the people on there are unusual/weird in some way, and that’s the reason why they haven’t just hooked up with someone before even contemplating online dating. (Not everybody is there for that reason, but that’s the group I’m focused on, because it’s the one I belong to.) Their dating hiatus could be because of mild autism, phobias, obsessive cleanliness, or some other form of quirks or mental afflictions that put people off if they’re not prepared for it or don’t swing with that kind of people.
But I don’t think that the real problem is these quirks – I think the problem is that there’s such a taboo on them that we don’t find out about them until we go on a date with that person. Nobody introduces themselves with, for instance, “hi, I’m Jill, and most of all I enjoy being alone at home and occasionally going to a mountaintop to scream obscenities to let out my pent-up anger from work. I’m looking for someone who enjoys my obsessive fanaticism for Star Wars memorabilia and can appreciate my traits of OCD”. I guess nobody sane assumes that anyone would be turned on by an introduction like that. But maybe we should?
Personally, I’m a weirdo, and I’m looking for another weirdo, because they would understand me in a way that ‘normal people’ never could. But I never acknowledge that on dating sites, opting instead for the usual type of “I’m an ordinary girl, and I enjoy hanging out and doing stuff” description. And that’s because
a) I figure I’m playing a statistics game, so I’m much more likely to find someone if I change myself to appear more ‘normal’ than if I start off by mentioning that I’ve been single for 9 years, and that this is probably due to me being pretty weird. And
b) I’m not compatible with just any type of weirdo. For instance, I’d love to date a man with mild OCD or traits of social anxiety. I probably wouldn’t be able to stand a man with mild schizophrenia. For others, it will be the other way around. But I can say universally that, for instance, if the guy has OCD and doesn’t let me know before our first date, the moment he has to touch the doorknob three times before entering a room, I will probably make a mental note to leave as fast as possible. Not because of the compulsion in itself, but because I’m completely unprepared for it, and seeing it makes me wonder what else he hasn’t thought to mention. Not having been able to choose the person on the basis of that fact *as well* as their fondness for going to the movies or playing football can wreck a first date that might otherwise go quite well.
I wonder if it would somehow be possible to create a dating site where the main focus was on the strangeness or the quirks that leave us feeling like we would be hard to date, and which honestly tell much, much more about who we’re compatible with than writing that we like to go for walks on the beach or enjoy traveling?
Would there be a market for that? There are certainly many undercover weirdos on dating sites. Wouldn’t it be refreshing if we were encouraged to start with describing the parts of ourselves that deep down we think would make people deselect us? It seems counterintuitive, but if we’re looking for someone to appreciate who we really are, wouldn’t starting with all the ways in which we don’t fit in make our odds of finding the right one better instead of worse? I know I’m tired of looking for Mr. Right among all the Mr. Normals. I don’t really want to know which popular pastimes you’re the least averse to participating in. I’ll know much more about whether I want you when you tell me what about you it is that you think would be completely unlovable.
speaking like playing the violin
I can’t find the time to write posts of my own, but I’m seeing so many good writings on autism by others these days. Here’s one of them: http://emmashopebook.com/2013/09/04/an-analogy-communication-via-violin/ I find this analogy works particularly well if you’ve had a few beginner’s lessons in violin, as the complexity and clumsiness of it all is then very visceral.
Degree of functioning vs. degree of autism
I follow a few autism-themed Facebook pages (there are surprisingly many and surprisingly many good ones). Today this was posted as a status on a page called Autism Discussion Page:
“Low/High Functioning vs. Severe/Mild Autism
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected).
This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis.
Making matters even more complicated, is the variability of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving.
The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses.”
It’s an interesting distinction. But the two planes could also affect one another, could they not? For instance, minimal personal care skills could be caused by sensory problems that make the person unwilling to deal with their own body because physical sensations are too overwhelming. Then the cause is not intellectual disability/low cognitive functioning, but an autism symptom. This, however, isn’t necessarily readily apparent, and parents, caretakers, or others close to the person may believe it to be a matter of ability rather than willingness if the person isn’t able/willing to communicate what the problem is. Similarly, someone may be nonverbal due to high social anxiety stemming from an inability to relate to and be understood by others – then we’re again dealing with a (secondary) symptom of autism and not something to do with cognitive functioning.
Indeed, it seems that an inability to deal with the outside world and an inability to communicate e.g. in the form of speech are more often symptoms of autism-related problems – being overwhelmed and feeling abused by others’ ‘NT’ approach – than symptoms of low cognitive functioning.
I read an article in Danish about Kristine Barnett’s experiences with raising her son the other day – I won’t post it on this English blog, but there are aspects of it in this article: http://www.theglobeandmail.com/life/parenting/how-kristine-barnett-nurtured-her-autistic-sons-spark-of-genius/article12752500/ One thing that’s really interesting about her story is that her son was nonverbal and pretty much completely nonresponsive until she changed her approach from ‘fix him so he can become normal, by treating him like he’s retarded and needs the same teaching aids as other kids, but on a lower level’ to ‘let him explore what he’s passionate about and let him learn that way’. This turned him around completely to being able to communicate his extraordinary intelligence in a stunningly short amount of time. It just confirms what I can deduce from my own upbringing: Autistic children, much like other children, become what you expect of them. Treat them like they’re low-functioning and dysfunctional, and they become (or stay) low-functioning and dysfunctional. Aid them in their strengths (or just encourage these strengths), and they become stronger – faster.
My personal experience is that it’s possible to be ‘high functioning’ enough that nobody believes you’re autistic even if you tell them – but at the same time have very severe autism symptoms. Infact, I’ve found that the better I fit in (i.e. the more socially streamlined I decide to work at being), the more I experience “rigid inflexible thinking” (I react strongly and negatively to changes in routine), “strong sensory issues” (I often experience hypersensitivity, sensory overload and shutdowns), “poor emotional regulation” (I go numb and sometimes have inexplicable strong, uncontrollable emotional reactions, e.g. anxiety or panic attacks), “delayed processing” (I’m constantly overloaded with information, mainly that coming from other people’s body and verbal language), and “impaired ability to relate with others” (others piss me off and confuse me endlessly because I can’t find a way to enjoy their company when I hang out with them as much as a ‘normal person’ is ‘supposed to’ ‘enjoy’).
I guess it could also work the other way around – e.g., if someone is very verbally adept, they can make up for some of the ‘glass wall’ effect of delayed processing and an impaired ability to relate to others. Put plainly: being good at explaining your difference (and knowing intimately how to phrase it in a way that doesn’t piss anyone off or sound unbelievable) can make a person more socially connected. Simply being verbal can help a person find the products they need that don’t itch or hurt, so that they can get better hygiene. Excellent academic insights may provide a job with a stable income that helps a person afford special products and services that minimize sensory overload. Etc.
I guess high/low functioning is a term for how well a person manages in the everyday NT-governed world – and mild/severe autism describes how autistic they are. Mild and severe are quite inaccurate (and offensive) terms, I think, because as the above distinction makes clear, problems with functioning don’t stem directly from autism. They can interconnect with and have their roots in autism (slash the clash between autism and the way society, available products, and the social sphere are organized), but are not necessarily results of it, nor do they always appear in those who are ‘severely’ (i.e. very) autistic.
A few links
April is autism acceptance month. If you’re on facebook, I recommend liking the page Mama Be Good. Every day throughout April, a new post with a quote or brief conversation about autism will be put up on the page. They’re all wonderful, but here’s my favorite so far:
“‘Fitting in’ doesn’t make the world safer for autistic people. Eliminating hate towards autism does.”
Mama Be Good is also a blog.
Btw, I found the page through the equally wonderful ThAutcast – facebook page here and website here.
One thing that’s really weird about autism is that some people are absolutely delightful and completely impossible for me to handle at the same time. That’s the kind of people who speak loudly and clearly, use a lot of gestures and facial expressions and laugh all the time. One part of me wants to be around them because they’re a total party, in the good way – another part of me wants to run and hide – or, if subjected to them for a long time, violently shove them out the door and slam it behind them – because they press me into the sensory overload of an actual party. Someone should invent some kind of all-round dampener so I could befriend these pleasant-unpleasant folks.
Imagine there are spiders on your face
Imagine there are spiders crawling around on your face. But you’re not allowed to try to get them off. Each time you do swipe at your face or make any other attempt at removing the spiders, other people react by getting angry, upset, punishing you, or otherwise reacting negatively. If you consistently remove every spider that crawls onto your face, you’re shunned from society completely. You can’t just remove all of them and be done with it once and for all, either – new ones will arrive a few moments after you’ve removed the existing spiders. So you have to make a choice between human connection and keeping spiders off your face. The human connection is always a bit weird, though, because other people don’t seem to have spiders on their faces, and there’s no apparent reason why you’re not allowed to remove them. If you ask why, people get angry and shun you.
When you’re alone, the spiders calm down. Sometimes when you’ve been alone for a while, they stop moving completely. You have the option of removing the spiders now that there are no other people around to see it. But in this allegory world, there are no mirrors. The closest thing are shiny surfaces that let you see a blurry, distorted image of yourself. So you have to grope blindly to remove the spiders. This can be quite unpleasant if they skitter away from your hands, if they’ve built a web that your fingers get tangled in, etc. Sometimes, because you’ve been restraining the urge to grope at your face all day, you forget that you even have the option of removing them, so you just let them be. Maybe, because ignoring them becomes your life’s work, you even forget their presence, and so you get really confused when you get an eye infection because one was stupid enough to crawl into your eye and slowly drown in tears, or you throw up for seemingly no reason when one dies in your mouth. Doctors don’t seem to be able to see the spiders or guess that they’re there. Infact, the spiders are apparently invisible to anyone that you try to talk to about them. So conversation about them can be quite confusing.
That’s what being autistic in a neurotypical world feels like to me.
Act normal or act natural, Pt. 3 – interaction, voice, and movement
I want to mention the latest thing I’m working on to come into contact with my body’s natural state, even though it’s still in its fetal stages. I’m doing sessions with a voice coach / therapist whose main focus is finding and releasing your natural voice.
At my first session with her, I was as nervous as I always am upon meeting someone new in a binding situation – that is, terrified to the point of near-shutdown. I told her this as we sat across from each other talking. I explained briefly that being autistic is kind of like being a giraffe raised by wolves (the giraffe speak vs. wolf speak reference, if you’re familiar with that method, was completely coincidental and doesn’t really apply), that I felt very inhibited and trained-to-not-be-a-freak, and that I wanted to learn to get back in touch with who I am without the constant nagging voice of ‘that’s not normal’ in my head. I felt like whenever I tried to perform, I was imitating what I had seen and what I thought performance should look like – instead of making use of the opportunity to come up with my very own concept of performance. She made the very astute comment that the whole idea of, and the great thing about, performance art is that it’s a completely free space. When you’re doing a performance, if you break social convention or act weird, that’s simply the act – so it’s the one place where you can be whoever and whatever you are without it being socially ‘dangerous’. Sweet music to my ears.
She asked me what I would like to do right now if I didn’t have social convention to worry about. How would I sit, would I want to look at her, at the wall, out the window – would I like her to look away, sit somewhere else, leave the room? I got into some kind of epileptic fetal position on the chair, started moving my head around achingly, trying to stretch the muscles into relaxation, and told her eye contact actually took a lot of energy out of me, so if I wasn’t obliged to that, it would relieve some stress. She turned her chair around so she was facing the wall behind me, and we got into an almost freudian arrangement of me, feet in the windowsill and ass in the chair, looking out the window, and her leaning back in her chair looking the other way. She was more relaxed about it than even I was, something I don’t remember ever experiencing before. I instantly relaxed so much more. From then on, the conversation was intuitive and incoherent; And for no reason I could rationalize, I told her about an interview with Tom Waits that I had just seen.
I wouldn’t presume to know what Tom Waits is thinking in that situation (I’m not exactly an understanding-social-situations savant), but I loved the interview because to me, it seemed like he was nervous and translating it into constant moving around and taking his time to think of good answers to the questions to the point of the interviewer thinking he just wasn’t answering and asking the next one before the answer came. I really liked the idea of acting like that – fiddling, stimming (I don’t smoke, but it’s a nice example of a stim), and taking my time. And letting the interaction, the connection with the other person, be quietly, but painlessly ruined as a result.
In the interview it wasn’t a problem: The host made the lack of connection funny, and Waits went with it (at least to the point of smiling overbearingly and allowing for the comedy to flow, which was all he really needed to do to keep the audience from getting uncomfortable). I guess the great thing about missed social connections is they translate so nicely into improvised, more-or-less accidental performance pieces. Also a reason my all-time favorite interview is this one from ’74:
I’m sure there’s a whole performance art form hidden in there. I want to be able to miscommunicate so beautifully with people as a result of just being me (or just not giving a shit – or just embracing the fact that we don’t want to ask and answer in the same way – call it what you will, I guess the causes and motivations are as constantly changing as in any other category of social interaction).
Anyway, the first whole session with this voice coach / therapist revolved around just feeling inwards and doing what my impulses told me to. It was just what I was looking for, it gave me a massive release of energy somehow, and I was so blissfully bouncy-happy afterwards that I seemed to create smiles on every face around me all the way down the street.
After several sessions, something very annoying has happened: I’ve become comfortable and therefore able to slip instinctively into my civilized-person role. I no longer have a need to look away or to fiddle constantly, and that annoys me, because then what’s left is sitting with my hands in my lap listening politely, and though I feel no impulses to do anything else, I can just feel that that’s not my natural state. I just can’t feel what would be healthier for me to do instead – what would set me free from the role. You know those braces that Forrest Gump wears on his legs as a child? I feel like I have those all over my body, to keep me from moving around when it’s not strictly necessary. And they’ve become such a part of me that I can’t get them off. That’s why that tension keeps coming back the moment my mind turns to something other than relaxing my body.
I’ve just started doing voice meditations, which is basically a meditation where you just let your voice do whatever the hell it wants. Some very strange noises come out when my voice does what it wants, and it’s quite wonderful to hear something that’s so clearly not derived from anything I’ve heard and wanted to be (which is otherwise how I live my life – I feel such resonance with Christian Lemmerz’ cartoony mirror ghost – I forget its name).
We’ve also been working on learning to let the poem move me instead of me moving the poem. The thing that has worked best so far is to follow the impulses for movement the same way you do with the voice in voice meditations, and then only say the words to the poem if they feel like a natural part of the movement. So far this kind of meditation is very silent, but it’ll get gradually infused with sound the more I do it.
I think these two kinds of meditation are what I need to really dive into now.
Too bad I’ve lost my voice from a throat infection right now. I’m generally getting throataches a lot since I started working on my voice. Every little step forward is accompanied by some soreness or even infection, it seems. Luckily I’m used to things working that way, so it doesn’t scare me off – just makes me more careful not to strain too much. And that’s one of the best lessons I’ve learned so far: Not to push myself at 120% constantly, but instead trying to find the 80% mark. 120% or even 100% is simply too risky if you’re trying to undo damage rather than create more.