Angry young men on the spectrum: interview with Aspie youth
Tom has an interest in killers and the macabre, a fascination with famous people and a calling toward music and digital art. He’s also a young man with Asperger’s and a fascinating one at that. Here’s our interview…
Interview with Tom
DONNA WILLIAMS:
You list one of your special interests as being an interest in the macabre, in particular an interest in murderers with an ASD diagnosis.
I have to say that’s a bit alarming for many people.
Where does this interest come from?
TOM:
I am not sure where it comes from, exactly. I can’t offer anything too deep on it; such as that I always felt like an outcast, and I became interested in outcasts or the weird from the mild to the major. Although I was definitely an outsider for the most part; throughout my elementary school years I had at most 5 friends. When I started high school, I was bullied a lot, and it caused me to have great alienation with people in general, and decided to be very self indulgent and selfish and cut them out of my life abruptly.
There was a period of time starting from the first memories I can remember clearly (starting around age four, ending around age 10) where I viewed life as something that was not real, all the things around me were “constructs” (I didn’t think of it using that word at the time, but it fits what I though back then) created by me, but not controlled by me. Going from what I’ve read, such ideas are common with children. I also thought that I could control my emotions by will – I don’t think that was ever true, but it was an idea held firmly inside my mind. I also felt that most of the time I was not in control of my body – that it was guided by a “real me” with which I would suggest things to. I didn’t recall anything like that about children, but there’s a lot of things which interest me that I haven’t had time to investigate on.
DONNA WILLIAMS:
What are you hoping to learn from gathering info on these people?
TOM:
To understand the mental pathology of those who commit acts such as serial killings. A lot of times, they were abused in some way as youth, but not always. To know how and why they think the way they do intrigues me.
DONNA WILLIAMS:
You have an interest in Temple Grandin. Many Aspies relate to her visual thinking but a significant percentage of people on the autism spectrum (me included) have come out saying they don’t think in pictures at all and have balked at her idea that she can presume her style of thinking is reflective of all on the spectrum.
What’s your position?
TOM:
I don’t think in pictures. It’s hard to explain how I think, it’s been a while since I’ve been reading about the terms behind the subject. I learn by someone showing me how to do things, and I just recall it. Same thing with my thinking – I recall whatever I need to know and apply it.
DONNA WILLIAMS:
You’re a drummer with a co-ordination difficulty. That’s pretty funky. I’ve heard your drumming. It sounds good. How hard was it to get your body, hands, ears and brain all keeping up with each other or is it that they don’t and you drum regardless?
TOM:
Well, what I sent you was created via MIDI programming. So while it is my composition, the sounds being played were not recorded or played by me. Think of a keyboard where if when you pressed a key, instead of playing a piano note, it played the sound of a snare being hit. No, I can’t get even close to playing drums physically as well as I can compose. I do enjoy the sounds despite that, and when I go to record, I’ll probably do a bit of both.
DONNA WILLIAMS:
I’ve seen your digital art, which I find pretty interesting. But you seem to be among those who struggles to fully accept digital art as equal to hand done art works. Why? Isn’t it in the eye of the beholder? Or do you have a different view?
TOM:
I have no problem with digital art. It’s my main medium. My problem is with certain people, and their views. Those who seem to think that digital art means it resembles something out of the original Mario Bros. games or that there isn’t a genuine process in creating it. It takes time to do the work – there isn’t as big a mess left over as hand painting something, but there is work in it. It’s the same thing that comes up with electronic music – it’s considered by some “lazy” or “easy” art. The ignorance annoys and frustrates me.
DONNA WILLIAMS:
You mentioned being an Aspie with brain damage which had occured prenatally. Which things do you attribute to your Asperger’s and which things to brain damage?
TOM:
The AS is most definitely genetic, at least in part. Not caused by the brain damage. I have an uncle who is stereotypical AS (more severe than me, but independent), and another relative – I think grand uncle – who is said to be “like me” (I feel kind of shy talking aloud about the subject aloud, so I word things like that). Also, my father’s education and jobs were primarily in the sciences – people who work in the sciences tend to have a higher rate of children with autism.
Since motor skills problems is on the co-morbidity list for ASD, it’s hard for me to say either way which caused them.
DONNA WILLIAMS:
The term ‘brain damage’ has pretty negative associations for a lot of people. They associate it with being broken goods, intellectually disabled etc. I look at brain damage as a reason to be very proud of the things that I can do and I feel that challenges drive me to find ways around them, sort of like how a tree will grow itself around a barbed wire fence, regardless. How do you see the interplay between things like Aspergers, brain damage, self esteem and what is the self?
TOM:
Both of them together (I am speculating here regarding the brain damage, see above, but I am sure it plays some part) make it so everything feels and seems awkward. It sort of hampers my ability to “just jump in” socially. My hand and body shake most of the time, which gives off an air of nervousness. I stutter sometimes, and it’s frustrating because I can never tell when it’s going to start and stop.
I feel detached most of the time. Sometimes I feel embarrassed to take pride in any the things I do such as my art, or think of it positively, because to do so would mean that I had an undeserved sense of ego. The primary thing that drives me in life is to help people – I don’t mean this like I’m some sort of selfless humanitarian, but I get a lot of satisfaction in helping others.
DONNA WILLIAMS:
Many people with Asperger’s see their condition as integral to their selfhood, they’ve known no different. Much of what’s diagnosed Asperger’s may well be about inherited personality traits, brain organisation and learning styles.
As a person with autism, my world’s a bit different. I have gut, immune and metabolic disorders as part of my autism as well as mood, anxiety and compulsive disorders which are at least aggravated by these. I can’t identify those with my selfhood any more than I would identify my selfhood with diabetes.
I identify self with my personality, my thinking style (which are probably both fairly autistic) but not the whole of my autism. I’ve had treatment for my health, mood, anxiety and compulsive issues and therapies which have reduced sensory perceptual and language processing challenges. As a result my autism is not as full on but I still feel I’m me.
I don’t feel any less me, in fact I feel freer to see the me now its not as dominated by the management of the condition.
Do you feel, as Temple Grandin does, that if you didn’t have Asperger’s you wouldn’t be you? Does having Asperger’s make all people drummers, composers, into Stephen King, magic or the macabre? Or is that just part of being YOU, that Asperger’s is the formatting but not the content, so to speak?
TOM:
I would say that if I didn’t have AS, I wouldn’t be me, on multiple levels. On a basic level, knowing that I had been diagnosed as having a disorder influenced my actions in the past and to some extent now. I might have behaved differently, things might have gone a different way if I hadn’t known, explicitly. Those past actions and the memories influence how I think and act today.
And on a deeper level, my personality certainly seems to be indicative of autism. I don’t like belonging to groups. One reason would be that if I affiliate myself with a group, I bring aboard the baggage others have with the term, which a lot of times is negative. I sometimes wish that I could live in utter isolation – like live out in the mountains and woods where there would be little disturbance.
ASD doesn’t make you into a certain something, as the outgoing AS people show, but the “outsider” factor certainly comes into play. Since we aren’t necessarily in tune with kids our age, we sometimes gravitate towards the “other”, Perhaps that will lessen as early intervention occurs more and more. Some would be unhappy about that.
DONNA WILLIAMS:
You originally contacted me because I was on a list of prominent people with autism. I see all people as equal. I don’t see myself as any more exceptional than the stranger I pass at a bus stop tomorrow who I’ve not yet met. What does that ‘prominence’ mean in your world? What do you think ‘fame’ feels like when you’re in those shoes?
TOM:
Prominence means that if asked, people would have some degree of familarity about what they were asked about. This can apply generally, to those a large portion of the public would recognize, down to small (in popularity) genres such as industrial music. Within industrial music, Throbbing Gristle would be very prominent, as they in part were originators of it.
There are prominent people within the autism community. The people who first recognized it, for example. Hans Asperger and Leo Kanner being the primary ones. Autistic individuals who became famous through writing firsthand account books or talking about it at seminars, or were the subject of documentaries. That would include you. Given that prominence can influence people a great deal, an autistic who has achieved prominence might have an enhanced or different perspective than one without prominence.
DONNA WILLIAMS:
Thanks for the interview Tom. I think your answers were wonderful, human, insightful, honest. All the best to you.
Warmly,
Donna Williams
Donna wrote:
“Do you feel, as Temple Grandin does, that if you didn’t have Asperger’s you wouldn’t be you?
In trying to answer this question, what kind of person would he imagine besides himself? Put another way, you seem to be asking him to imagine himself without Aspergers, and could he or anyone else imagine this? It’s not something they have ever experienced, nor can conceive of.
Hi Jamie,
fact is we’re all many more things than our neurological organisation
we are from all kinds of cultures, social class, have our own personality traits, traumas, patterning, happy memories etc etc.
The question was an important one as Asperger’s primarily comes down to personality trait collectives (ie obsessive compulsive personality), together with details thinking (very left brain dominance which includes tendency towards science/engineering etc) and poor co-ordination (Dyspraxia).
Autism is like a more complex fruit salad.
Many, me included, have serious physical issues – gut, immune, metabolic disorders and mood, anxiety, compulsive disorders, language processing and visual perceptual disorders…. so saying ‘autism is the sum total of who I am’ is very different to someone in my situation to how it is for those without these issues, which includes some people with autism and many with Asperger’s. So the question may sound absurd but it differentiates whether aspects of a person’s condition are ‘ego dystonic’ (meaning not identified with selfhood – like gut, immune disorders etc) or ego-syntonic (which are identified with selfhood – like personality traits, brain organisation etc)
To understand this better, you might read The Jumbled Jigsaw.
As you can see, the autism world is actually pretty diverse and many from the autistic end don’t speak or type, so those who are verbal often presume their reality speaks for all, but there’s so much difference. Even the new stereotypes (ie ‘all autistics think in pictures’ etc) are being challenged and thrown out all the time.
hope that’s helped.
Warmly,
Donna Williams
http://www.donnawilliams.net
so if, for example, you asked me, could I imagine myself without the health, brain chemistry and sensory perceptual issues I have which CAUSE much of my experience of autism then my answer is, yes, I can. I can imagine this because of treatment for these things – diet, supplements, medication, tinted lenses, patterning exercises, cranio sacral therapy, mc Timoney chiropractic, gestural signing, etc etc. So I have experienced myself far less autistic than I was but under the wrong circumstances would experience myself again as significantly more autistic, so I have a contrast. If you ask me am I just as much ME with more or less autism, my answer is YES, in fact I feel more ME with less of my autism but less autistic. This is because MY issues which exacerbated MY autism were not inherent parts of who I am.
But also, some parts of my autism ARE inherent parts of who I am. So, my personality traits are very autistic… I’m vigilant, solitary, idiosyncratic and artistic – all solitary traits, so I can spend days, weeks, months alone, I’ve even spent 18 months mostly alone and hardly got bored or even registered lonliness. I love people, I just love them out there and I like to observe them, hover around, but I don’t need them much, I feel I’m in parallel with them, I don’t naturally desire entanglement (in fact it feels alien and I detest fuss). So THOSE parts of my autism ARE me.
And I’m also not at all a details thinker. I’m utterly global in my thinking, feral, improvisational, a systematician and an utter artist with little technological skill (I struggle to tell the can opener from the garlic crusher). And whilst that’s totally unlike Asperger’s its very usual in some pretty non-verbal autistic people who rely on sensing their world and people more than interpreting. So I guess this extreme could be pretty autistic and yes, I find THIS PART very much part of ME.
So the situation is pretty complex and clearly a person with Asperger’s isn’t necessarily like all ‘autistics’ nor is every ‘autistic’ like an undeveloped version of someone with Asperger’s.
I have skills many Aspies don’t have at all and they have some I couldn’t have in my wildest dreams. For example I have an IQ apparently under 70 but I am very innovative and improvisational so I compensate great. But most Aspies have extremely high IQ and can’t improvise at all like me. Everything in my world is fluid and meaning is irrelevant and doesn’t gel much of the time but the Aspie world is completely about intellect and meaning. Different, but equal worlds. My husband is quite Aspie. I find him awesome and inspiring.
🙂 Donna Williams
http://www.donnawilliams.net
I was referring to the personality and capacity side of Aspergers/autism, and in asking Tom (or anyone else)
“Do you feel, as Temple Grandin does, that if you didn’t have Asperger’s you wouldn’t be you?”
This is to ask them, it seems, to conceive of themselves without the core Asperger’s features (personality, capacities/abilities, deficits, etc). My point is I don’t think this can be imagined unless such a person experiences themselves without Aspergers.
You mentioned you’ve received benefits from those various treatments, but how have they helped your core autism symptoms. Can you imagine yourself without autism, which would be a person with normal/extensive social abilities (in contrast to what you mention above), the ability to relate directly with people and the desire to do so (although, desire usually follows ability, so if you have the ability you usually have the desire, and if you lack the ability, you usually lack the desire (and many then ignore why it is they lack the desire)).
I think the issue is similar to asking someone with congenital blindness to imagine what it is like seeing.
Hi Jamie,
actually diversity isn’t that simplistic.
There are auties who’ve never flown but imagine themselves as Superman
There are blind people who imagine things they’ve never seen by parallels with what they know through touch.
There are those who’ve never walked who will tell you what they’d do if they could
There are those who have no social desire who have watched so many others with it, even wished they had it, who can say what they might of done if they had it.
people simply aren’t text books, they are far more surprising and odd.
There are many things I struggle to imagine but I certainly have enough examples around me of people who can do many thing I can’t and yes, this make me sometimes imagine how life would be if I were like them and not like me.
and many people lack ability and have desire in abundance. Read Autism and the Myth of The Person Alone and books like it. You will find many have desires to experience things they have no ability in. Others, of course, are not such idealists at all, and idealism is simply part of things like personality and, sometimes, mania, two things which having autism does not make anyone exempt from having though very many won’t have either.
There are also many people with autism I’ve worked with who had abilities but extreme deficits in desire. I have put many of my clients in positions their carers imagined them incapable to help themselves, and they always suprised the carer. Those who seemingly couldn’t climb stairs, open doors, get out of a swing by themselves, crawl, and then suddenly did at late ages 6, 8, 10, 12. Children who didn’t speak who began to after age 6, adults in their 30s who’d never spoken who asked verbally for cake when it was finally not just given first, those who typed for the first time in their 30s and 40s but only with assistance and insistance… so really the idea that ability naturally leads to desire is simplistic. There are many reasons the two don’t go together at all… have a look at The Jumbled Jigsaw for examples, severe social phobia, exposure anxiety, learned dependency, dependent personality disorders etc etc…. all very REAL obstacles, but obstacles to desire more than ability. The techniques used to trigger ability were those which countered natural anti-motivations, freeing up the motivations to get into sync with ability.
We need to move on from narrow stereotypes. 12 years as an autism consultant knocked out every presumption and stereotype I could have imagined about anyone on the spectrum. I’ve been surprised more times than I can count.
And yes, I have a blind friend, blind since early infancy, and he imagines the things others see based on their descriptions and his own translations of those in his perceptual reality but he can also very much hear and feel their excitement and imagine it over their sensory experience of vision.
Beethoven, too, composed music whilst deaf.
Blind people have driven cars.
people in wheechairs have done abseiling.
presumptions and stereotypes are simply too convenient and harmfully prescriptive.
🙂 Donna Williams *)
http://www.donnawilliams.net
🙂 Donna *)
It is different to imagine PHYSICAL abilities that one doesn’t have, in contrast to MENTAL abilities.
In the example you gave above, yes the Aspergers person can wish he has that extensive social life, BUT, it is impossible for him imagine himself being a person with extensive social abilities. Yes he can wish he was like others who he admires, and imagine being that person. But as for he himself, it is impossible for him to conceive of himself any different with respect to his current core Mental abilities. The only way this would be possible, is if he in his past had social abilities but now does not. This is the only basis for him to imagine himself without Aspergers. Sorry to say, as sad as it is.
So this one question to Tom in your larger article “Do you feel, as Temple Grandin does, that if you didn’t have Asperger’s you wouldn’t be you? is not really a coherent question, in the sense of being conceptually coherent: it expresses something that is not coherently conceivable, it asks someone to ask what they would be like without the condition they always have had, and while they have never experienced a difference in the CORE MENTAL ABILITIES that are a part of the condition. Yes they may have had some improvements, but not in these core abilities.
The statement Grandin gives is also incoherent — it expresses essentially nonsense in the sense of something that is minimally coherent/complete. I don’t find much value in this level of vaguery, incompletness, etc.
Some autie spectrum people who watch TV dramas, develop identification with non-autie characters to the degree they imagine THEIR lives AS these TV characters, including non-autie skills. There are even those who strongly identify with and imagine themselves as the family dog or cat and this is common in those with both autism and things like Exposure Anxiety or Demand Avoidance Syndrome who compulsively take on roles. So, yes, with such ongoing examples on a daily/weekly basis, people can become patterned into and identified with non-autistic characters and their attitudes, antics, style etc to the degree they become very disappointed when trying to play these out in the real world doesn’t work. I’ve counseled AS adults who have had this stuff happening to a level that was really depressing for them about their real selves.
Could they have such extreme idealised intense identifications and imaginative ‘playing out’ if not for such reinforcement and modeling via TV, cartoon or book characters? I don’t know, maybe not, at least I imagine it’d be a big struggle. At the same time many quite disabled people with more severe autism have typed about imagining themselves speaking, having social interactions they are actually not functionally capable of at the time etc, and these imaginings are based on being surrounded by modeling of non-autistic ‘normalities’, not TV characters.
Again, one must get away from theory and stereotypes and look at real people.
The rest is just convenient beliefs that justify mental theories.
To test a theory, become a consultant and listen to people ask you about struggles they have with things you may never imagine they could struggle with.
You can’t test a theory in a theoretical manner. Theories are tested against diverse lived realities. Presumptions of what’s IMPOSSIBLE become proclamations of mindsets set in stone and are not useful though may self serving to the person with the pet theory who doesn’t wish to revise it.
… Donna Williams
http://www.donnawilliams.net
as for vaguery, (imaginative) identification versus reality is vague by definition.
🙂 Donna *)
I’m autistic, and I do understand what you mention above. On the one hand, there is what you mention: about TV and real-life people that serve as role models etc for us, and how many can imagine being like them in various ways. Then on the other hand, there is imagining YOURSELF as your own person but not with autism/Aspergers. My point is simply about this, not about imagining/dreaming your like somone else, or a combination of other people. This has nothing to do with what my point is. My point is about an autistic person imagining what THEY would be like without it, not what they would be like if they had someone elses particular social characteristics/personalty/style, not what they would be like to be somone else, not if they could do what someone else does.
There is a very clear disctinction between the two. My other point is that in order to accomplish what I am talking about, it is NECESSARY for the autistic person to experience THEMSELVES without autism, and this doesn’t happen with autism, that is, there are no remission periods in their lives — remission into being normal (by which I mean, non-autistic).
Simple point. I do understand your position though.
I didn’t mention I have autism at the start because I didn’t think it was that relevant, but you seem to think I’m a theorist or scientist trying to prove a point. I wouldn’t do that on a website of an autistic person, this blog seems to be mainly for autistic people and their families.
There are some who so compulsively imagine themselves without their ASD that they are afraid and distressed constantly when faced within ability to function that way.
Having an ASD does not exclude one from developing an identity disorder just as one can have autism AND diabetes or autism AND a mood disorder etc.
There is also a neurological condition called Anosognosia in which someone can be unable to face or accept the realities of their own condition. It’s actually a feedback problem in the brain, but they actually believe they don’t have the condition whilst all functioning evidence proves daily that they do. Anosognosia is common in people with bipolar and schizophrenia, for example (also happens in some blindness due to ABI where the person is certain they can see but can’t), and the stats are that around 30% of people with ASD may have mood disorders, including bipolar. One study I saw said that 20% of those with Asperger’s had co-occurring schizophrenia, so its easy to imagine that for a range of reasons SOME people with ASD very much DO identify with and imagine themselves without ASD, however dysfunctional, delusional or ultimately distressing that may be for them.
I have certainly been specifically asked to work with a number of people clearly in this group where THIS was their primary problem – that this over identification was putting them at risk.
It is not always that they’ve been taught to hate their ASD, for some its PTSD, sure, but for others its more about a pathological idealisation of non-autistic people and their functioning and world and in other cases its about extreme isolation due to things like Exposure Anxiety and Social Phobia in which the only way they can function outside of their anxiety is to imagine constantly they are not themselves.
I also knew you were on the spectrum and this certainly doesn’t exclude any person on the spectrum being a theorist or scientist. Temple Grandin is very much the theorist and does lectures but hasn’t worked as an autism consultant seeing a vast body of clients so she hasn’t had the chance to test her theories against the day to day clinical work with people with ASD.
The autism forums are full of people on the spectrum who spend much of their time theorising and being lay-scientists. Whilst many on the spectrum are far more towards the arts and physical activity, others are very much intellectuals thriving on theorising and finding others who share and support their theories. I’m certain that some of these folks can’t tell theory from fact and are so certain of their own observations and exclude all info that doesn’t fit their theories so they perceive them as facts. It’s fine to say “I believe” or “in my experience” but this is not to confuse belief or theory with fact.
That’s all fine except if those theories aren’t tested in REALITY against the DIVERSITY of people on the spectrum it leads to rhetoric and prescriptive modern stereotypes and isolates those who don’t fit them as well as limits professional awareness of how to help those who don’t fit the neat boxes. So words like ‘impossible’ should really be used very sparingly.
… Donna Williams
http://www.donnawilliams.net
I think that what I expressed and Grandin expressed is in some ways coherent. While we can’t say for sure that it’s exactly like we suddenly switched over to non-autistic thinking, part of it is reflection on who we are and what autism does to us. I think that’s possible, but harder for an autistic to do because of the nature of the condition.
Some serial killers were abused as youths?
Understatement of thte history of the human species, if you ask me! You will NEVER, EVER find a serial killer that lived a so-called normal life with a so-called normal family. Granted, some of them suffer from brain injuries and other afflictions that are beyond their control, but nurture goes such a long way.
As Dr. Ralph Welsh once said, ”
By the way, I, too, have similar fascinations. Two of my favorite shows are Most Evil and Deadly Women that deal with those issues, although I tend to focus on unusual sexual orientations, many of which I have. Anyway, I am angry Aspie youth, and often find myself only willing to be with other angry people, and have never been a perky person and could not stand those who were. But I have my happy moments, and at least I try to channel those pesky imps that I have into something good.:) Also, I admit to being comforted by discussion of or images of suicide, murder, drug use, or anything else like that because I sympathize with the pain, the anger, the desire to ‘get away,’ and everything else. But I would never hurt someone else intentionally, no matter how angry I was, and I have been suicidal before, but never seriously, and I knew I could not do it because who knows what damage I would cause? I would never get to do or get to be all the things I wanted, I could not change my mind the next day…so yes, I very much understand what this man is saying and I love that he is willing to not be squeamish and to explore it.
Hello everybody, my name is Damion, and I’m glad to join your conmunity,
and wish to assit as far as possible.