Tuesday 20 June 2017

Eye-contact issues (specific article)

Researchers Explore Why Those With Autism Avoid Eye Contact

I just came across the above article, from last Friday, in Neuroscience News. I'm always interested in the scientific reasons for why we are the way we are (both autistic and NT) and this is one that has piqued my curiosity in the past.

I generally don't make eye contact with anyone. I could count on the fingers of one hand the number of people I've intentionally made eye contact with, and even then it's brief and fleeting. Accidental eye-contact makes me physically uncomfortable and I shudder when it happens. My skin prickles and it hurts, to the point of being unbearable. It's something that often gets commented on, and my inability to make eye contact has been mentioned in feedback from job interviews, that they didn't like that I didn't do it. It's one of the reasons I sought a formal diagnosis and now I always mention it prior to any interview because otherwise it will count against me (if I disclose and it's used against me, that counts as disability discrimination; if I don't, they don't necessarily know that I'm autistic and thus measure me against NT norms because they don't know any better). 

Are you aware how difficult and unnatural it is for so many of us? Because it is unnatural for a lot of autistics.

During conversation I tend to look at people's mouths, so it's less obvious that I'm not making eye contact (I don't do it in order to make it less obvious; the "so" is more a "thus" rather than a "because"). I frequently have people say to me, "But you were making eye contact just now!" Er, no I wasn't. I must confess to being rather baffled that they can't tell that I'm not doing it - the physical sensation is so strong in me; is it not for other people? Surely you can tell if someone's doing it? If you're an NT reader I'm genuinely interested about whether or not you can tell, and why/how. I look at mouths partly because it's where the movement is - being so visual, the slightest movement catches my attention, so my gaze will be focused on where the movement is occurring - and partly, these days, because I sign so the mouth gives important cues for exact meaning, emotion, etc, and finally (and I think the biggest reason, from what I can tell of my self-analysis) it's because I have auditory processing issues, so lipreading helps contextualise and clarify what's being said.

Also, eye contact on top of concentrating on the words being spoken is just too much sensory input for me and I can't focus, especially when there are other sensory inputs from the surrounding environment. Multiple noises make it impossible for me to process and comprehend speech; lipreading over eye contact can often be the difference between me understanding or not understanding something.

I really don't get why people make a big deal out of making or not making eye contact, other than it's a social NT norm. Gideon (my husband) tells me that lack of eye contact generally send the message that you lack confidence or that you're hiding something/are untrustworthy, so presumably it's all tied in with that (it's something I might look into another time). I get frustrated that so much emphasis is placed by professionals, experts and parents on autistics (particularly autistic children) on making eye contact - there are better things to spend time, effort, money and so on, on, than enforcing NT norms on us, particularly one that causes so much discomfort. I get annoyed with parents going on and on about how it's so wonderful that their child finally made eye contact, especially when it's after however many hours of "intervention" (generally code for ABA and similar) - is that really the most important thing??? Seriously??? 

On to an analysis of the article.

First, I would like to note that "abnormal" in scientific terms and articles does not necessarily mean faulty or broken; it means different from the majority (and autistics are in the minority compared to NTs) and is a completely neutral term. Yes, in the wider world it is considered perjorative, but in the scientific world it is neutral. It does make me a bit uncomfortable, I have to admit, but I also know that in this context it is a neutral term. 

  • It's fairly easy to read and well-summarised (the information in it is taken from a scientific academic journal article), so is somewhat accessible for a non-scientific readership (which is so important for disseminating accurate information, because the vast majority of us don't have biomedical or neurology degrees).
  • I really like that it contains the experiences of actual autistics as to how making eye-contact feels; we are the best people to ask. It's so important to get our perspectives, our words, rather than just those of NT parents, professional and experts.
  • This research uses techniques that should be easy enough to duplicate by other scientists.
  • It indicates that the reason behind the differences in eye contact between autistics and NTs has a firm biological reason/root, so it is an "overactivation of subcortical brain structures in response to direct gaze" rather than us being 'difficult' or 'lacking interest'. Thus hopefully it will stop us being punished for what is perceived as bad or disrespectful behaviour.
  • It reinforces the concept that there are clear, distinct differences between autistic and NT brains; maybe that will help dissipate the notion of "we're all on the spectrum".
  • Clear, replicable scientific methods such as the one used here could eventually assist diagnosis, with definitive scans and tests supporting the current methods (like audiology tests for deafness, for example).
  • There are plans to further this research, which is a good thing.
  • The article's language can be a little too technical for some readers - I have an A-Level in biology and an HND in occupational therapy so my understanding of neurology, and structures and functions of different parts of the brain, is perhaps a little above that of many others, so it isn't quite as accessible as it could be (though it is worth bearing in mind that it is a neuroscience site, so the target readership has to be considered, and hopefully anyone without the relevant knowledge about things like functions and structures of the brain will then go away and read up about it).

  • It refers to the difference as "abnormal", which although as stated above is a neutral term within science, does make me uncomfortable because of the negative associations of that. Perhaps "difference","minority neurology" or similar would be better?

  • It exclusively uses person-first language, which may seem like a petty quibble but as I and other autistic writers have stated and explained, it actually really matters, because perpetuating PFL reinforces that autism is something that can be separated from us, that we are a "normal" person with the autism as a detachable add-on, which is not the case (and this research demonstrates that our brain wiring is inextricable from our identity, so the use of PFL in an article showing that autism cannot be separated from a person and is intrinsic to who we are seems somewhat oxymoronic).

  • And the big one: stating that NT norms should be the goal and what is natural for us should be eliminated:

    'In revealing the underlying reasons for eye-avoidance, the study also suggests more effective ways of engaging individuals with autism. “The findings indicate that forcing children with autism to look into someone’s eyes in behavioral therapy may create a lot of anxiety for them,” says Hadjikhani, an associate professor of Radiology at Harvard Medical School. “An approach involving slow habituation to eye contact may help them overcome this overreaction and be able to handle eye contact in the long run, thereby avoiding the cascading effects that this eye-avoidance has on the development of the social brain.”'

    It sounds to me like they want to employ CBT techniques. That can be beneficial for some things, like overcoming phobias, because not overcoming phobias can be severely limiting for people's lives, such as agoraphobia preventing someone from doing grocery-shopping, working, socialising and things they enjoyed. Desensitisation and so on can really help (I say this as someone who has OCD tendencies; I try to rein those in because otherwise they cause real problems in every aspect of my life).

    But autistics not making eye contact is NOT HARMING ANYONE. The only thing that's negatively affected is NT social norms and the NT's feelings, at the expense of the autistic's. Never mind that it's physically uncomfortable, if not downright impossible, for us - we are still expected and encouraged to conform to NT standards. And that is something that doesn't have to happen. What should happen is that with this newfound knowledge, we disseminate that information and use it to support and assist diagnosis in order to benefit autistics, not in order to train us like dogs (such as with ABA) to seem more NT, to conform to NT standards. Because that's what the author(s) is/are suggesting: that we use this knowledge in order to enforce NT norms and train autistics to present more neurotypically. Not to accept our differences.

    What we should do is say, look, this research demonstrates clear biological and neurological differences between autistic and neurotypical brains; this shows that society should learn about, understand and accept this difference, and accommodate it. NT people should accept that a lot of autistics do not and cannot make eye contact because it is physically uncomfortable, distracting, overloads the senses, etc, and work around that. Plenty of autistics function perfectly well without making eye contact - I'm fairly sure my friends and family would say that I do, and that not making eye contact hasn't caused negative impacts on my life (the job-interview-feedback situation is very much a past one, before I knew I was autistic; since I've realised and been diagnosed, I've disclosed and it hasn't got in the way as far as I can tell, as the few interviews I've been to, my explanation and reasoning have been accepted with a smile). Not making eye contact hurts nobody, just NT norms and expectations, and with education and acceptance, those can be broken down as they don't have to exist.

    Stop forcing your NT norms on us with no regard for their impact on us. Respect our diversity.

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