Amanda Baggs shot to notoriety after pictures of her caused controversy on an autistic pride website. After she produced a You Tube video featuring herself typing her communication, she featured on US TV and her video was seen by over a 1/4 of a million viewers, inspiring functionally non-verbal people with autism and their families around the globe. Thrust into the limelight, Amanda was alone, at risk of becoming an ‘autism circus’ like several autistic people before her. And with this came the pressure, the kudos and the critics. Amanda has granted me this interview into her fascinating journey.
In many cases there are serious gut/immune/metabolic disorders, in others serious language processing disorders, agnosia (meaning blindness) and other visual perceptual disorders. There can also be proprioceptive (body feedback) disorders, dispraxias (movement organisation disorders which can include oral dyspraxia) or inability to process a simultaneous sense of self and other. There can be co-occurring cognitive issues including Dyslexia, sequencing disabilities, attention deficits and psychiatric issues including impulse control disorders (including OCD and Tourette’s), anxiety disorders (including Selective Mutism or Exposure Anxiety ) mood disorders, even psychosis. On top of that some people with autism can develop Post Traumatic Stress Disorder, dissociative (identity) disorders. Some also have additional substance abuse (sometimes self inflicted, sometimes due to badly managed or badly prescribed inappropriate medication or doses) sometimes leading to additional brain injury.
We all can break down, physically,emotionally, psychologically, psychiatrically and when we do some of our natural personality traits can become more extreme and others may diminish, leaving us in a personality disordered state. This happens to people with autism too and can occur as young as 18 months of age or anywhere on the road to adulthood.
I was originally assessed as psychotic, for example, at the age of 2 in 1965,after being tested for deafness and no reaction to pain and observed for self injurious behaviours. Then when I was still being tested for deafness at age 9 I was labeled disturbed throughout childhood in the 1970s and diagnosed autistic in 1990. I believe there are some people with autism who began their infancy in such a breakdown state on many levels for many interconnecting reasons. Yet I have heard from others who may have had autistic traits which went unnoticed until progressive breakdown happened on a variety of levels throughout childhood or adulthood and then their autism came to the fore.
Amanda, What do you think was in your ‘autism fruit salad’ and at what ages did your own issues onset or become exacerbated?
I think I was autistic from birth, meaning, as I view it, the perceptual systems, the emphasis on sensory patterns over what most people consider thoughts, the differences in relating to the world and my body, all those things were there from the start. Irlen syndrome. Synaesthesia. Sequencing issues. Proprioceptive problems. What you would call meaning-blindness and meaning-deafness. Language approached as sound pattern and pattern response. The beginnings of a movement disorder that became more apparent much later (no armswing, etc). Ability to do things (thinking or moving) automatically or triggered better than deliberately. Eye-tracking issues. Trouble walking. Hypermobility (not diagnosed until adulthood, but apparently inherited through my mom). Lost speech in infancy, not sure why. Echolalia without meaning after that, gradually phasing into echolalia with *some* meaning. Receptive language problems.
There were also some kind of oral problems. Reflux. Constipation, trouble nursing. Neuropathic pain of some kind. Milk allergy, as well as standard allergies to some animals and pollens. Circadian rhythm issues.
OCD and Tourette’s happened age 6 or 7. Certain kinds of meaning came online at around that age too, but hurt to use. Signs of PTSD starting around that age too, as well a depression (the depression only ended in the past few years). Head banging started at age 6 or 7 and became very much worse in mid-adolescence and early adulthood. Complex-partial seizure disorder that may have always been there (some early childhood experiences, such as briefly hallucinating a familiar object and then suddenly vomiting, suggest either that or migraines), but was first noticed as a probability in adolescence, now well-controlled.
Burnout of those kinds of meaning and thought starting around age eleven. I was sexually abused starting at this age by two adult male relatives, which likely accellerated that burnout. One of these men also tried to molest other female relatives. The other of them did get counseling and stopped doing what he had done so I’m not going to dwell on the details.
More and more obvious signs of a Parkinsons-like movement disorder began starting at this same age, including freezing periodically, more difficulty controlling body, more movement issues, more trouble with speech. More and more need to use the autistic strategies I’d been using all along, but more and more often. Also deliberate retreat into fantasy — not a “disorder” driving me to do this but a choice to avoid reality if I could. I began being sexually abused in adolescence.
Brief period of LSD abuse in adolescence, quite a few years after this sexual abuse. Had an unusual response to it (became more functional) but I don’t feel I had lasting effects from that. By contrast, I had a long period of involuntary neuroleptic abuse in adolescence, which I think possibly resulted in brain damage and increase in the movement disorder. Complex PTSD in reaction to institutional settings in adolescence.
Another burnout thing in early adulthood. Stamina issues starting in early adulthood (previously had near-unending stamina). Increase in migraine headaches throughout adolescence ending in constant ones by early adulthood. More asthma trouble in adulthood. TMJ trouble in adulthood (from “defects” in my jaw/skull present at birth along with other mouth anomalies). I rarely think of my body as a jumble of medical terms like this, it’s just my body.
A major part of being autistic for me has been difficulty retaining and holding things learned consciously, regardless of current level of ability to temporarily learn anything consciously. But stuff sort of falls into place behind my own back, and that is the only way I learn stuff in a lasting way, not deliberately, not consciously, not on someone’s schedule. I don’t consider the place where they put all the conscious stuff “me”, it’s more like a structure on top of me that is built and falls and built and falls, sometimes built higher than others, sometimes impossible to build at all. So I feel like I as the underlying patterns and unconscious learning and such have stayed roughly the same but this weird surface structure has changed a lot at different times in my life.
Amanda, that was a pretty awesome analysis of your own systems. I think if people with developmental disabilities can be helped to work out what issues are at work for them they can better self advocate as well as form coping strategies to manage various challenges.
You have reached recent notoriety in the autism world and been a great source of inspiration and hope to many families and people with autism without functional language. People have labeled you ‘low functioning’. Why?
I haven’t the foggiest idea. I had more speech and such then than I do now, although less of it was connected to who I was, more of it was connected to giving people what I thought was required of me. I also had better self-care skills by adolescence than I do now, although not spectacularly so, that is an area that has always been difficult. I am really not sure why people labeled me that way.
These days nobody gives me specific functioning levels officially, although I scored about 45 on a test of “adaptive functioning” where the lowest score is 40 and the average is 100. I don’t like the idea of functioning levels because I don’t think you can measure everything about a person and assign them a single level, people are more complicated than that. I know of people who are considered “lower functioning” than me, such as Sue Rubin, who do things I could not do at this point, like graduate college. And I can do a lot of things that people considered “higher functioning” than me can’t.
I think people come up with a “functioning level” when they think of a particular ability as more important than others and then they measure a person’s entire “functioning” by that ability. Like right now people often consider me “low functioning” for not speaking because speech is really important to them, I guess then I would have been “high functioning” when I did speak even though my actual amount of communication (even as measured on tests it turns out) was lower. It’s too random for me, what people consider to be important. The things that are the most important to me (pattern sensing, ethics, love, connection, etc) are things I have gotten consistently “higher functioning” at over time, but people still see me as “regressed” because I lost some other things they consider more important and had emotional trouble in the meanwhile.
Also, the expectations change at different ages. There are things I seemed only a little behind on as a child, that turned into major issues as an adult. I had the same level of skills as a child and an adult in those areas, but would have been considered higher-functioning as a child because less was expected of me. Then there’s the fact that if you put me in an environment that has many cues to the actions I need to take, I look a lot more functional than I do, as the same person, in an environment where nothing cues me into action. There’s so much that is dependent on things other than the person.
Very good points. From your writings and our correspondence its obvious you are a passionate, empathic, deep thinker and you have learned this doesn’t appear obvious from appearances. I have known many people who use Facilitated Communication or typing as their main communication. Some of these people are astoundingly complex, deep, passionate people, others are not. Contrary to the stereotype, some seemingly severely autistic people had a later onset to the severity of their problems. I know, for example, one highly talented but severely disabled many who uses typed communication who didn’t lose speech till age 7, but most in this group were quite severely disabled from early infancy and some from birth.
Where does your own language development fit into this picture of relying on augmented (typed) communication?
I was different from the beginning. Some people think when you lose things it means you were always “normal” and this wasn’t the case with me. I lost whatever speech I had somewhere between 12 and 15 months. When I regained it, it was echolalic. One of my earliest language memories is of hearing my mouth say the words “Saint Bernard” without knowing what words were, that they had meaning, or even that it was my mouth the sounds were coming out. Even when my speech sounded more normal, I had trouble with receptive language, and didn’t always understand what I was saying. I often related to speech as a requirement, but not one I fully understood. Because of this I related to it as patterns more than as meaning, especially at first.
I learned to touch-type when I was 9 years old and my school had a typing tutor program. There was a cat on it, and I liked cats, so I kept at it for several years until I typed really fast. In the meanwhile, my brothers had access to BBS systems, which were what people used before the Internet was widespread. I would do much what I had done with speech, find keywords and repeat things I had heard. For instance, “art” was mentioned so I would say “Why do people paint squares and call it art?” which was something I had heard someone say. I would also write lyrics to songs, so obsessively that on one BBS they joked about getting me a karaoke machine for Christmas. Since many of these BBS’s had adult areas, I would also write things about sex that I don’t believe I’d have understood at that time. Over time, through putting out words and getting words back, I learned a lot about how two-way communication worked, in a slower way than speech allowed.
I started having speech cut out on me, overlapping with all these experiences, around puberty, when I also started experiencing more of a parkinson-like movement disorder. They apparently knew that I could often still type when I couldn’t speak, because it is written in my records. However, I don’t remember being offered the opportunity to type, at least not very often. In both cases I was still essentially approaching words as a requirement, not necessarily a means of communication. Things were still pretty random as to whether they were communicative or not. If you wanted reliable communication it would be in the songs I sang or the collections of objects I showed people, but only one person back then really figured any of that out. To add to any confusion, I was often in psychiatric settings where real communication, when it happened, went either unacknowledged or punished, and in those places, I was treated better if I said things I did not mean. This does not teach a person the point of communicating very well. I often just let myself say random things in response to other things and let everyone else sort it out.
It became more important to me to be able to say what I meant, not all these other people’s words, when I became an adult. But speech was not working for that, even when I had speech. It was like grabbing a rusty lever and trying to hit a target across the room, often hitting another target altogether. Typing was more reliable. I was starting to be exposed to people whose experiences of the world were closer to mine, and their use of words helped me to learn which words to use myself.
When I went to Autreat 1999, I saw a woman named Cal using a keyboard part-time. I was terrified, but based on my experiences there (including finally getting the movement disorder identified by several other people who had it), I asked for such a keyboard. My everyday communication immediately became richer, more spontaneous, and less exhausting. Shortly thereafter, a friend bought me a little Remington portable typewriter in an antique store, which I immediately began to bang out poetry on, and also advice to myself with insight that I would not have consciously imagined possible.
Around this time I was tested and it was found that if you used tests that tricked me into having to use language spontaneously rather than relying on echo and triggered words, typing was a little behind most people my age, but speech was far behind most people my age. Speech eventually dwindled from near-uselessness into total uselessness. But by then I was typing both fluently and with communicative content, so I didn’t miss anything.
I want to add that this does not mean that words are now simple or easy. It is still hard for me to communicate about things I have not heard the words for before. I still have to watch out for phrases entirely different from what I mean, creeping into what I am saying. I still have trouble with understanding other people’s words, whether spoken or written. I still have trouble coming up with words when they are not triggered by something. I still have trouble with the mechanics of typing sometimes, and occasionally need touch to remind me where my body is, to start me moving if I freeze, or to inhibit involuntary movements related to the movement disorder. But for now typing is by far the best way to get meaningful words out of me, so that is how I do things.
I should also note that I had the chance to play around with a device that measures physiological stress, when I visited MIT. I am unusual in that most voluntary movements cause me measurable stress, whereas for most people they do not. However, typing did not cause me any stress at all, nor did automatic movements like rocking. I would bet that if you’d measured me when my speech was more fluent, speech would have caused a lot of stress too. I remember it even at its best as painful and exhausting, rapidly driving me into a level of overload and shutdown that it would today take an entire day at a crowded, noisy conference to produce.
What you say about automatic speech is interesting. I find that when I’m pacing, walking or in a car, speech flows. When I’m stationary, it can be like an archaeological dig, dragging up old bones from clay, but I CAN usually do it… but I’ve been using functional speech since 9-11 years old. The old stored speech I could reel off mindlessly and, yes, its pretty wild how passable it can be in short bursts.
You have been held up as an icon but also pursued by harsh critics. Yet none of us fit neat boxes and your journey, however different to many functionally non-verbal people with autism, is nevertheless as valid as any journey by someone with a developmental disability.
Where do you fit the neat boxes?
I right now lack communicative speech. I rock. I flap. I used to head-bang a lot, not so much now but it still sometimes happens. I used to bite myself all the time. I can appear socially awkward, annoying, and abrasive. I can appear oblivious to people altogether. I can *be* oblivious to people altogether. My scrapbook from childhood consists of my having copied words out of astronomy books while barely able to hold a pencil straight, as well as clippings about the Voyager 2. I was violent as a teenager. I need a lot of help functioning throughout the day. I “regressed” in infancy. I’ve walked into traffic without meaning to. When I was little I did fine on my own but screamed if approached by other kids. I can have a nasty temper. When I could talk I usually had a monotone voice and could bore people to tears reciting large chunks of information I’d heard. In between expressions I have a very flat facial expression that is my dominant expression. I was echolalic without meaning when young. I used to be a major trekkie. I like cats and when asked to write an autobiography for school at age 11 wrote it entirely in terms of the names of my cats over time. The first book I ever read, quite young, was a field guide to birds rather than an easy reader book. I have always had trouble connecting with my body. I have trouble understanding both spoken and written language.
Where do you completely defy the neat boxes?
I have a full range of emotions. I can love and be very attached to people. I am overwhelmed by my perception of others’ emotions, rather than simply being oblivious. I can map social situations out in a great deal of detail as long as I don’t have to also follow the language people are using. I have so much imagination that my pretend play as an adolescent was detailed and full-immersion enough to be part of what got me labeled psychotic. I was somehow labeled gifted as a child without being able to understand the word “test”. I wasn’t “normal” before I “regressed”. I love enjoying movies and other things with people where we are both focused on the same thing that is not ourselves, and I want the other person to be happy and often check to make sure they are still enjoying themselves. Instead of having a relatively unvarying set of abilities I have one that is constantly changing and swinging around wildly in ways that even I can’t predict, let alone anyone else. I used to be able to speak in a way that seemed superficially normal — but didn’t start out that way either, thereby defying two different boxes at once. I can sing. I am creative. I went to college *and then* special ed in that order. I can bake but not cook. I like to read fiction, particularly children’s fiction. Most people who know me in person tell me my sense of humor is my most obvious personality trait.
Some things it depends on which neat boxes you mean. My pattern of learning things and losing them and learning them and losing them again may seem to defy the current stereotypes in the autism world. But I learned that when Sean Barron was diagnosed, his mother was told not to teach him anything because he would just lose it again at puberty. Which is not that far off from how my life went, even though it’s very far off from how Sean Barron’s life went. The boxes I do fit combine both HFA stereotypes and LFA stereotypes, sometimes in succession and sometimes both at once, the combination of which defies a lot of boxes in itself.
Do you feel that whether of not you neatly fit the boxes should have any reflection on whether or not you are an inspiration to others?
I’ve never set out to be an inspiration, so I’ve never thought about it. I would rather make people think and challenge people on an ethical level, and I’m definitely capable of doing that no matter what boxes I fit.
You, like me, were put through ballet from an early age, which is not only excellent training for neurological integration and connection to body, but it is also part of learning about conformity, structure, performance and roles. How did you feel about the physical training of it and how does this compare to what it taught you about performance and people’s insistence on roles?
I was in ballet because the alternative given by my doctor was a leg brace. My mother helped move my body through all the positions. I don’t know whether I learned about performance in ballet, I don’t know if I understood that idea at that stage. I did learn it later in dance and music lessons. The way I viewed life was that it was largely a chaotic mess of dancing patterns appearing and disappearing, but that certain things were required, certain actions, certain patterns of words and speech. Those things that were required might amount to a performance.
I experienced something more as ‘requirements from Outside’. I was terrified of what would happen if I stopped being able to fulfill those requirements, despite no clear idea of what I was terrified of. Kind of like the Lady of Shalott. I pursued them with high intensity, driven by fear, until I couldn’t anymore. This work was so painful my secret wish was to be unconscious, but I did not have the capacity to describe either my pain or my wishes. I often ‘disappeared myself’ into textures or colors when I had the chance. I am sure to outsiders by middle to late childhood I looked at the same time high-achieving, high-strung, overly sensitive, and very strange. I doubt most people without disabilities could see how much energy this took and how fast I would run out of it.
I’ve met people with autism who ‘become’ the family dog or cat, ‘become’ TV characters or mirror another child in their class and whilst many of these people are not severely autistic some would fit in the moderate rather than ‘high functioning’ groups. Some consider this a skill and it can be part of child development but it can also be involuntary, echopractic (involuntarily mirrored movement), echolalic (involuntarily mirrored words) and an indicator of significant anxiety disorders, identity disorders and information processing disorders. There have been times in your past where you’ve used roles to appease people and this has lead you to play ‘crazy’. What types of ‘crazy’ have you played and why?
Well I certainly did the family cat(s), too. 🙂 But there were many kinds of crazy and many reasons for them.
When I started running out of energy to do the “requirements from Outside,” I was still of course terrified. I was also in many ways more obviously autistic, but I didn’t know what that was. I thought all my stims and tics and mannerisms, and speech problems, and difficulty with conscious effort and thought and movement, and losing myself in things, were a horrible weakness, and they were happening so much more often because I simply couldn’t keep up the requirements.
I tried to retreat into fantasy and dreams, even treating waking as a dream and dreaming as waking, because I was so scared of what reality seemed to entail for me, of not having a future. Treating my life as a dream and living my daydreams as if they were real, I still knew the difference between fantasy and reality, but it sure didn’t look like I did. I wished that these things were real, and thought maybe if I believed them long enough they would be. I always heard “you make your own reality if you believe enough” in the California culture around me and I had no reason not to believe it.
The only thing I had heard of that remotely resembled the loss of abilities I was experiencing was the idea of going crazy. I didn’t know quite what crazy was, so I didn’t pick a particular kind. Crazy became like my new requirement, the requirement of a person who had failed at the real requirements. If I began to experience overload and shutdown, throw in incoherent echolalic rambling because heaven forbid overload and shutdown stand on their own as their inexplicable-to-me selves.
I also outwardly mirrored the ‘craziness’ around me. When I encountered a boy who had what he called ‘fragments’ (many people living in the same head) I began to interact in the same manner, and soon was in a social circle where many people claimed to be multiple and some of them steered me more into doing things that way, even though I was and remained singular. Many strange new age beliefs I heard around me got incorporated into my repertoire. So did hallucinations and so forth because of course those were ‘crazy’ material.
Later on I was forced to play certain kinds of ‘crazy’ by various psychiatric professionals. I gave them what I thought they wanted out of me. To make matters more confusing, sometimes their drugs caused delirium, mania, or hallucinations, convincing me that maybe these people were right about me.
Underneath all this I was a confused autistic person who was no longer able to even attempt the requirements of ‘normality’ and who had opted for the requirements of ‘crazy’ instead. I have read Sharisa Kochmeister write with shame about following the requirements of ‘retarded’ and I know what she means. I wonder why we are made to feel ashamed when we follow requirements that are not ‘normality’ but not when we follow the requirements of ‘normality’. My underlying issues were overload, shutdown, burnout, and the inability to function in general, as well as depression, but I covered them over with ‘crazy’ because I thought that was the only way they would be acceptable and explainable and within some set of requirements.
If you’ve played ‘crazy’ then its clear that if you wanted to you could have played ‘autistic’ too.
I’m not sure if that is true or not. I was diagnosed with autism while I was ‘playing crazy’, and knew next to nothing about autism, certainly not enough to have played it. The randomly-assigned doctor in a psychiatric facility when I was 14 got an overriding impression of autism and ‘idiot savant’ from an interview with my mother (who also knew little about autism), and then met and tested me, still playing ‘crazy’, and continued to believe I was autistic.
Being autistic made it easier for me to play ‘crazy’ though. There is a lot of overlap between the mannerisms and behavior of an autistic and Tourettic person, and the expected behavior of a ‘crazy’ person. I don’t think I’d have been able to successfully play ‘crazy’ without the fact of being autistic to fall back on. What I did was mold the ‘crazy’ in over my tics and mannerisms and social isolation and so forth. When I ticced nonsense words they thought I was using ‘neologisms’ which was a sign of a ‘mental illness’ for instance. In a psychiatric setting it’s very easy to re-interpret even the behavior of a ‘normal’ person as a psychiatric abnormality (this has even been studied), and I was not a ‘normal’ person.
In the modern media focus on autism many people with autism have expressed pressure at different times to cover, deny, highlight or exaggerate their autism. Some, like Temple Grandin, have felt compelled to identify her entire selfhood with what she sees as her ‘autism’, going so far as to proclaim that something as common as visual thinking (in fact the most common human mode of thinking for 60% of the general population) is particular to people with autism. As a ‘famous’ autistic I have found myself torn between those who would expect me to ‘appear’ more autistic and those proud of me for defying the stereotypes and seeing my selfhood as more important and sacred than my condition (yet not denying my condition). I certainly meet people with autism all the time who have all types of laypeople presuming a right to put their diagnosis on public trial. There’s definitely a presumption, a preciousness, among some people, that people with autism should conform to a hopeless prognosis but there’s also a presumption that progress only ever goes one way, that people with autism don’t have regressions after age 2. In my case I had many leaps forward but also a marked regression in late childhood (after acquiring receptive language around age 9-11) and a complete health breakdown in early adulthood.
How does this compare to similar pressures and experiences in your own life.
When I finally learned that I did not have to ‘play crazy’ anymore, I did go through a period when learning about autism where I tried to force-fit myself into a lot of autism stereotypes I heard. Some of them were actually based on a group of people’s interpretations of your life, and I only really fit some of those. But something changed. I realized there *were* no ‘requirements’. That I could just be myself. And then I dropped the ‘requirements’ altogether and tried to do whatever worked for me. It was amazing to be free of these ‘requirements’, I had never before had the capacity to stop and think enough to know I could be free of them.
My strategy is to find what I need to do, then find a way to do it. If what I do seems to fit an autism stereotype, so be it. If what I do seems to fit a stereotype of not being autistic, so be it too. I have had it with being controlled mindlessly by a set of requirements. I view “autistic” as a word for a part of how my brain works, not for a narrow set of behaviors, and certainly not for a set of boundaries of stereotype that I have to stay inside.
It so happens that my best strategy for words looks “autistic” because it is not speech. Many of my strategies for managing and responding to sensory input look “autistic” because they involve unusual movements of my body. I do not resist these things, I do not have the energy to, I have to streamline things. I still live with terror and shame about these things at times, but those are from outside, and I try to treat them as outside intrusions.
Then it also so happens that my capacity for emotional range and emotional connection is much higher than I thought it was. I had to shut it off, to go into battle mode, because I was so badly bullied at school. I wonder sometimes whether some autistic people over-identify with battle mode and mistake it for part of themselves. I have seen some auties militantly defend various things as “part of autistic neurology” that seem to just as often result from growing up autistic in a world where being autistic makes you a target. The ability to grow beyond that might be discouraged as non-autistic but I’d rather just grow beyond it.
People who are precious and defensive in pursuit of loyalty to perfect stereotypes are purists, perhaps theorists who lack a good grasp of diversity and the holistic nature of developmental challenges. But perhaps being an armchair expert is a voyeuristic hobby in our Big Brother, reality TV world where so many clamor for 5 minutes of fame.
Are you ever an armchair expert?
I am not interested in what I call mental widgets, which are like abstract ideas people form and bounce off other ideas without ever bouncing them off of reality. And then they mistake the widgets for reality. If an armchair expert is the same thing as what I’d call a widget-bound person, then no. If it means something else, I don’t know.
Are there any stereotypes you’re precious about?
I don’t know about precious. I’m fond of the one about pattern sensing because it fits me quite well, but I’m aware it’s not universal.
How do you feel about the ‘fame thing’ you’ve ended up caught up in?
I don’t like being expected to represent an entire group of people. It’s impossible to do that, and some people want it of me anyway. And some people want me to have been perfect and stereotypical my whole life when I haven’t been. I can’t control who they want me to be. So it’s very strange, very uncomfortable. Seeing myself on television felt icky, gave me feelings of unreality for days. It’s like a necessary evil to get other messages out, and it’s uncomfortable, I don’t like the exposure or the attention to me, especially when it’s not actually me, it’s someone people think I am, want and expect me to be. And some of the reactions I get remind me of some of the press in “Harry Potter”, where people just build and build on distorted versions of what happened in my life, and assume that if I have some tiny amount of fame it’s because I sought it out for its own sake, when nothing could be further from the truth. And I realize that like Harry it’s only me and those close to me that matter as far as knowing who I really am and what I’m really about. It all makes me want to hide under my desk.
On your recent CNN interview, you were framed as someone ‘severely autistic’. As you know I think autism is the result of many combined things, different collectives of which effect different people. But this ‘framing’ of you in this pigeon hole has excluded a lot of other information you were actually open about, information that means you don’t neatly fit people’s little boxes and labels. But without people understanding this ‘editing’ processing, this ‘framing’ done by the media, they could presume you have made what amounts to ‘lies of omission’ about your autism.
Did you feel pressured to fit people’s autism stereotypes?
Not at the time of the interview, since I was not interviewed by the editors, who even edited out a lot of non-stereotypical *actions* on my part. In general though, I find that I get consequences for not fitting stereotypes all the time. What I’ve found is that if I do not immediately divulge my entire past, which is too complex to divulge at once, people fill in the blanks, and then often get angry at me when they find my past does not fit what they imagined it to be. Similarly, if I show abilities they were not expecting, like the ability to sing, they imagine that I could talk if I really wanted to, or sing replies to people, and that’s not how it works. Or they get angry at me. I once talked to an autism researcher who quizzed me on which kinds of speech and singing and typing I could and could not do, got me to demonstrate, and told me the exact area of my brain that probably works differently than most people. But even with the knowledge that this is understood by neuroscience, I am afraid to sing in public because of this. It is a wonderful form of communication, it’s one that has always been easier for me, I am open about my ability to do it, and yet I am equally terrified of people’s amazement and their suspicion so rarely do it in sight of others.
Do you feel people with autism are condemned no matter which way they go? (If they fit the stereotypes they can be accused of playing up to them but if they defy the stereotypes they can be accused of having been misdiagnosed).
Yes, I do. I have experienced both of these things. I have been accused of playing up to the stereotypes because my facial expression really is usually pretty flat, for example. I mean, I have all the facial expressions, I can smile and laugh and frown and so forth, but ordinarily they fade back to neutral faster than most people’s. I have also been accused of it when stimming, or when stimming differently than someone had seen me stim before (I guess we’re only allowed one set per autie). But then when I do show a facial expression, or I am not stimming, both of which happen fairly often, or I use sarcasm or joke around or something, then I get the “You were misdiagnosed” thing. It really is a matter of being unable to win, as you said. Condemned at the same time for being too autistic and not autistic enough.
What would you think of the way media trims stories and edits interviews to either fit people into feel good stories or create or trump up controversies?*
It’s unnerving to me. Seeing how it was done in my case makes me wonder so much about everything else I see in the media. I will find it hard to fault someone for their media appearance again, I have judged people too prematurely and harshly before for things that were probably more related to the editors than to the interviewee or even the interviewers.
There have recently been some critics who have claimed that you had most functions in the ‘high functioning’ range till age 11-14. Most people with severe functioning issues haven’t had that same early development. Whilst the labels shouldn’t matter, there will be many who are very precious about their labels and would like to know how you think someone can appear to function at a high functioning level yet actually have significant challenges others either don’t see or choose not to.
What I find with things like that, is people think since I did what they call a regression in adolescence, they believe I was always totally normal before that, or close to it. They see it as I had always been on a hill, and then I fell off. In reality I have had two so-called regressions, one in infancy (before which I was also not “normal”) and one in adolescence. If you put me in ordinary terms, it would be as if I climbed a little bit up a hill (infancy), fell down (infancy), climbed the rest of the hill hanging on barely by my fingernails with all my strength (throughout childhood, getting especially higher in later childhood), and started falling off of that (puberty), while still clawing at the hill and trying to stay on top of it. But the place I fell into is not a bad place, just not what people expect of someone. What people don’t see is that the person is hanging on by their fingernails, rather than standing on their feet on solid ground at the same height like most people do. This denies the struggle of the person who had to climb to where other people were born.
Amanda, however you may or may not fit the stereotypes, I have found your story a fascinating one and your passion and empathy for others inspiring. Whatever your reality, however quirky your ASD fruit salad, what matters is where your heart is at and its my belief that you spoke out because you felt passionately for the discrimination voiceless people experience in our society.
Thank you for your trust in granting me this interview.