Autism Inside Out
Underneath is guest post by Samantha, an autistic trans woman living in Australia, giving us a comprehensive primer of autism.
Cross posted at her blog The Truth.
Autism: From the Inside Out
A primer and explanation from an autistic woman to a non-autistic audience.
Different types of Autism?
Autism runs on a spectrum of different levels of social ability, some call this ‘low functioning’ and ‘high functioning’. Personally I am not a fan of this because of the implication of ‘high functioning’ person being better or superior to a ‘low functioning’ individual.
Autism comes in many forms, from completely non-verbal and non-social
(the typical ‘autistic child’ you may have seen on tv.), to people with ‘HFA/Aspergers Syndrome’ and
Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS for short).
Are you all like Rainman?
Some of us are indeed gifted with superior ability in certain areas, from mathematics to languages to most anything you can think of.
But those of us with those abilities are in the minority of the Autistic population.
Most of us have particular special interests that we are incredibly knowledgeable about or remarkably talented at.
I myself can play piano to a concert level, as well as understand most anything electrical or mechanical. But basic math escapes me completely, I also have a fairly large obsession with “The Dresden Dolls” and exploitation films.
Sometimes these special interests can be a bit all encompassing. But when you find it hard to fit into an emotionally centred world, can you really blame us?
Facts are easy to process and understand and for us they can be things of joy giving us happiness on levels that face to face conversation at times barely even match.
The autistic activist Dr Temple Grandin once said ‘I am what I do’.
Which sums it up, we are defined by what we are good at.
Non-autistics are defined by social and emotional constructs, those are hard for us to grasp.
So that definition is found elsewhere.
What do you mean by different levels of social ability?
Here is a metaphor everyone can understand.
You don’t send a fashion designer to repair a toaster. (Although I’m sure out there somewhere is a very lonely fashion designer/toaster expert dying to be called upon)
Just as you don’t do that, you don’t send an Autistic person to do a Neurotypical persons ‘job’.
We are simply not wired that way.
Neurotypicals are highly social beings with an innate understanding (to varying degrees) of social communication; this includes things like reading body language such as facial expressions, body movements, tone of voice and eye contact. Most people on the autistic spectrum do not have this ability and as such have difficulty dealing with social groupings, politeness and appropriateness (though this I think has to do more with the judgement of others than the autistic people themselves). We also have difficulty with ‘turn taking’, that is the ability to work out when to speak and when not to speak AND what to speak about.
Are you all emotionless robots?
No, not at all.
People on the autistic spectrum lack what is called is sometimes called theory of mind, or the ability to perceive emotions in others and react in kind.
You may have heard this referred to ‘a lack of empathy’ unfortunately this is often confused as also meaning lack of sympathy. I have a great deal of sympathy and am able to on a rational level understand and want to help people in plight or in need of help. I often lack the ability to emotionally understand what they are going through (unless I have personally experienced the same thing).
This can often not only apply to others, but to ourselves as well.
I myself can take a great deal of time working out in my head what my various emotions mean, honestly the only things I can feel and identify on the fly are ‘happy’, ‘sad’, ‘excited’ and ‘angry’.
When I do have emotional reactions to things, it is usually delayed by sometimes (hours or even days) due to the way my brain processes the information.
Because we have difficulty processing emotional information quickly and then being able to act on it, we often have extreme issues having emotionally based conversations.
This does not mean that we cannot understand what you feel or say.
We often just take our time working it out.
On empathy and navigating the social world.
Living in a world you’re not built for can be a hard task.
Let’s start off with a simple example.
You and a friend go to buy coffee.
How do you deal with this situation?
I guess you’d find something nice to wear, arrange a date, time and place over the phone.
Then meet and enjoy.
Now let’s see it from the perspective of a person like myself, with high functioning autism.
First I have to work up the courage to use the phone; this is a BIG DEAL for me I Really do not like using the phone. The whole experience of talking to a disembodied voice freaks me right out. God forbid somebody calls me the sound of the ringing can make me want to run for cover.
Then, I have to find something to wear. Okay no big deal right. Well for me this isn’t such a big problem. I don’t have issues with fabrics. Some autistics are highly sensitive to different textures and smells. So unfamiliar or tight fitting clothes can be a cause of stress and processing difficulties.
So that’s all sorted and the time and date and place are worked out.
Now I have to leave the house. Most autistics have severe sensitivity to environment.
This ranges from difficulties with bright lights, different sounds and vibrations or even the feel and smell of objects. Some of these can be heightened and incredibly painful to us or sounds that are actually very soft can be so loud as to be irritating or even panic inducing.
I’ve learnt to wear headphones all the time so I don’t have to deal with the outside noise.
Everything from loud bangs to diesel motors set me off badly. Don’t get me started on car horns.
So once I’ve dealt with this I have to deal with the social stuff at the cafe as well as dealing with environmental sensitivity. Now you may understand why an autistic spectrum person might act a bit strange or scattered.
So we get there, meet somebody we know start a good conversation.
But the friend might be upset about something and in need of advice.
Let’s say she has just lost her job and she is feeling down and upset.
The autistic person turns around and explains reasons why she might have deserved to be fired, and ways she may solve the situation in the future and then rattles on about various government services she may be able to use to get by. This is a logical answer with a focus on the facts of the situation.
But the friend she gets upset when the autistic person says these things and goes off at him or her about being heartless and uncaring because didn’t they realise they needed somebody to empathise with them and give them some emotional support.
This is an example of where Neurotypicals and Autistic Spectrum Individuals could have a misunderstanding.
The autistic person may not have understood what his or her friend needed because she did not give direct instructions and relied on emotional information to get the message across about needing support. If perhaps the autistic person has been told ‘hey, I really need you to ‘be there’ and hang out with me today and have some fun because I’m feeling down’ then perhaps things may have gone more smoothly as the autistic individual will have had a better idea of what their friend needed.
Navigating the socially based world is complicated and highly unpredictable.
The day to day social situations one can encounter range from the simple to the complex.
And all require various degrees of understand of the social ‘rules’ at play and the expectations that are required from the individuals involved.
These rules are nearly always unwritten and in a constant state of flux
depending on the people involved.
What is appropriate for one situation may really not be appropriate in another.
The same goes for the people you are around.
It’s no wonder that with our sometimes limited social understanding that we can act a bit strange.
Who could blame you when just trying to work out what other people want from you is such a chore.
But don’t jump and assume that we can’t empathise with you just because we come at things from a different angle. We can be just as caring as anyone else.
I hope this article has given you some clearer insight and greater understanding of what it’s like to be autistic, and to understand what we have to go through day to day.
- Samantha
Hi, Samantha here.
I wanted to make a brief comment in case anybody complained about my usage of the term ‘Neurotypical’.
It is a term used widely in the Aspie/Autistic community used to denote ‘non-autistics’ or others who do not suffer from a mental illness.
If you find my usage of this term offensive, please let me know.
Samantha
July 13, 2009 at 4:47 am
As far as I’m concerned, this blog views neurotypical in the same way as cisgender and cissexual. That is, it is a perfectly acceptable way to denote people who aren’t autistic without centering us as the default.
And thank you for writing this.
Lisa Harney
July 13, 2009 at 4:58 am
Thank you. I knew a little about Autistic spectrum disorders, but this really helped to get a grasp on some things I didn’t understand before.
Also, even though I’d never heard of the ‘Neurotypical’ label, it made complete sense to me straight away.
Sammie
July 13, 2009 at 5:40 am
That’s no problem Lisa, I enjoyed writing it.
- and Sammie (awesome name btw) I’m glad this helped you get a better handle on things, and I hope i’ve opened your eyes a little.
I’m planning to write a few more follow ups to this.
More when I’m done.
Samantha
July 13, 2009 at 5:49 am
Well, if the follow ups are half as good as this, they’ll be brilliant.
(Thanks! Yours is obviously awesome too.)
Sammie
July 13, 2009 at 6:13 am
Thanks for this post Samantha, I think the part that discusses empathy is particularly important for neurotypical people (like myself) to read, because often we hear unclear information about that.
Damien
July 13, 2009 at 7:36 am
Thank you, Samantha. That was very interesting, and I’m going to pass it along to my partner, who knows a lot more about the autism spectrum than I do.
As for “neurotypical,” I smiled when I saw it, because I thought it was great to have a term for “non-autistic.” I’d never known about that term before, but I’m glad I do now. None of us is “normal,” just differently abled.
Véronique
July 13, 2009 at 9:31 am
Brilliant post. I have AS and work with autistic children, and I found your descriptions accurate an insightful. Especially the bit about “I am what I do” and empathy vs sympathy. Your description of navigating the world rang very true.
Keep writing about it.
almandite
July 13, 2009 at 9:38 am
I really appreciate this post. It’s rare to see the perspective of someone else with ASD in the trans blogosphere, and I’m glad when I do see it.
-CJ, lifelong Aspie, 3 years with a dx :p
MTG
July 13, 2009 at 12:40 pm
Can “neurotypical” be used to denote not just in contrast to autistic, but to other non-physical disabilities? People without OCD, for example, or maybe even people without depression.
Quixotess
July 13, 2009 at 4:35 pm
Lately I am increasingly inclined to be critical of ‘empathy’ as applied to autistic and neurotypical people. We might say autistic people lack empathy because they often do not have an intuitive understanding of people different from themselves, thoughts, feelings, motivations and actions. But then, it seems to me neurotypical people display an equal lack of empathy toward autistic people – they say autistic people do things for no reason, are ‘mysteries’, are ‘unable to relate’.
So I suspect neurotypical people are not actually more empathetic than autistic people, but most people are like them and so they have a lot of opportunities to be accurate in attributing motive, feeling, desire, etc. who operate largely similarly to themselves. But they also happen to be the majority, or at least are in power and presented as default, so ‘empathy’ becomes ‘ability to relate to and understand /me/’.
Actually, given the way people are treated across borders of culture, identity, physiology, am inclined to question whether empathy as it is claimed to be is much expressed at all.
aesmael
July 13, 2009 at 6:41 pm
Quixotess: I think neurotypical can and should be extended as you say, yes, although it often gets used as short-hand for ‘not autistic’ and using it so (to really contrast with neurodiversity instead of merely autism) leaves us without a convenient way of decentering ‘not autistic’ as ‘normal’ – but then using neurotypical to mean ‘not autistic’ seems to me to pave over a whole lot of other variances which could sensibly claim the same pair of terms.
Arg, tangle of words. Has been on my mind a lot lately, but not yet clarified in thought. Am of-the-moment thinking it would be useful to have a word in use to express ‘not autistic’ separate from neurotypical, that presently neurodiverse / neurotypical is edging into double duty as meaning autistic / not autistic AND neurodiverse / neurotypical without clear distinction in usage, and thinking also they would easily become knotted, tangled terminology where people might speak of a particular expression of neurodiversity in relation to neurotypicality and also to other expressions of neurodiversity.
Um. That may or may not make sense to read. Thoughts still in processing, sorting. But, personal disapproval of hypothetical or actual attempts to restrict neurodiverse / neurotypical terminology to discussions of autism exclusively.
aesmael
July 13, 2009 at 7:00 pm
We adopted three boys with various forms of autism and appreciate those who would blog on such an important subject. People more than ever need to be informed about autism and what life is like for those so affected since this debilitating condition seems to be on the rise.
KJ
July 13, 2009 at 8:09 pm
Neurotypical is more than mere shorthand for “not on the autistic spectrum”.
The very word Neurotypical is intended to contrast with the phrase “Neurologically atypical” and thus to imply that autism is a neurological disorder AS CONTRASTED WITH psychological disorder.
Autism is a brain disorder (or at least a brain atypical). It is emphatically not a disease of the mind, and it is abuse to apply to autism the branch of medicine that specializes in diseases of the mind.
To write, as Samantha does,
>> It is a term used widely in the Aspie/Autistic community used to denote ‘non-autistics’ or others who do not suffer from a mental illness. <<
contains innuendo that autism is a from of mental illness. Again autistic people may have brain wierdnesses but they do not have mind witnesses. The distinction is crucial.
So there is nothing offensive about the term neurotypical. What is offensive is suggest that somehow "non-autistic" is related to "not mental illness". Rather it is autism that is "not mental illness", rather than the reverse.
Henry Hall
July 13, 2009 at 10:05 pm
I wasn’t trying to reduce neurotypical’s definition, and I apologize for managing to do that anyway.
My point was: Neurotypical is not offensive, and is explicitly acceptable here.
Lisa Harney
July 13, 2009 at 10:11 pm
KJ, I can’t speak for anyone else here but I’m a bit uncomfortable at your use of the term “debilitating condition,” since it seems to imply a value judgement on those with ASD, it seems to imply people with ASD need cured or fixed. Again, I don’t speak for the autism community, only for myself as a person with some rather minor disabilities, but i find it uncomfortable.
Ethyl
July 14, 2009 at 9:00 am
Ps I also wanted to say thanks to Samantha for this insightful and illuminating post.
Ethyl
July 14, 2009 at 9:01 am
I am currently overbusy with the action against VHWC’s discriminatory policies, but I wanted to take a moment to thank Samantha for this post. There are so many myths and stereotypes about autism, it is so important we hear the voices of people with the life experience.
I’ve added you to my LJ FL, and I look forward to reading you! Thank you…
gudbuytjane
July 14, 2009 at 9:12 am
I wanted to just say, that in regards to the ‘pro-cure’ ‘anti-cure’ debate that I myself would never choose to be cured.
While my life on the whole may end up easier, but I would lose a valuable part of myself that I just..couldn’t imagine not being there.
Samantha
July 14, 2009 at 10:33 am
this is a truly excellent explanation – tight and informative – also, ve3ry well written and accessible – and offbeat. i love it.
ulla
July 14, 2009 at 10:34 am
I don’t really see my self as ‘debilitated’. Disabled, yes. Differently abled, most definitely. But the idea of a cure, especially as envisioned nowadays, is repulsive to me.
MTG
July 14, 2009 at 1:33 pm
Samantha, as a trans woman, I understand your feelings about a “cure.” Our brain is us. That’s where our personality comes from, our very self. If someone had a way to put my brain into sync with the body I was born with, I’d say no, because that would be like having a personality transplant. I’d be “cured,” but I’d no longer be me.
Véronique
July 14, 2009 at 5:28 pm
KJ – “debilitating condition”?
I have Asperger’s. Somehow I don’t feel debilitated, not in the least.
The only debilitation that I see is yours – it’s called “curebie-ism”.
GallingGalla
July 14, 2009 at 8:34 pm
From everything I’ve read, the problem is not so much autism as the lack of accommodation that society allows for autistic people, and then that lack of accommodation is itself treated as something internal to autistic people.
That is to say that autism isn’t debilitating, but the way neurotypicals treat it is. Inatitutionalization, attempts at cures, attempts to forcibly socialize autistic children to appear neurotypical, etc.
Lisa Harney
July 15, 2009 at 1:15 am
@HH
contains innuendo that autism is a from of mental illness
This seems like a slur against mentally ill folks, kind of an “at least we’re not THEM” way of phrasing it.
Exactly why is is so important to separate autism from “mental illness?” How would you do this?
Samantha, thanks for this post.
voz
July 15, 2009 at 11:38 am
On what lisa just said, i’m planning when I have the energy to tackle the issue of how NT’s seem to treat autistic people with an ‘our way or the highway’ mentality.
The idea of there being only one ‘correct’ way to be wired and that if you’re not then you are left in the dark.
Furthermore, people with physical disabilities receive enabled access (ramps, walkways etc) in public areas. I’d love to see some sort of environmental awareness from government services for people with environment sensitivities… but thats another story
Samantha
July 15, 2009 at 6:53 pm