Tuesday, 20 August 2013

Autism and loneliness

I really should be tidying the kitchen, but somehow I've ended up writing this blogpost...displacement activity?  Maybe partly, but also I got a tweet from an autism organisation whilst I was shopping earlier (campaigning on the go!!) and ever since I've been thinking about why it is they just don't seem to get it when it comes to quality of life in autism. 
I think most people would say that the main thing that gives them pleasure in life is related to relationships with other people - children, partners, friends. 
Those of us who don't have autism....let's imagine for a moment what our lives would be like if we didn't have those relationships, or if we had a condition that made it really hard to make and maintain friendships and relationships.  I know my quality of life would be very very different.  I can think back to a time when I wasn't in a relationship......it was very lonely.  I was unhappy, demotivated, and had no zest for life. 
Thinking about life without my kids and without everything I get from being part of a family.....urgh, let's just not go there.
I'm wondering why the abovementioned organisation (and many if not most large autism-related organisations) focus on compensating for the difficulties that make it so hard for people with autism to develop or improve the abilities they need for successful friendships and relationships instead of helping people with autism to develop or improve these abilities....?
There are some people with autism who are successful in relationships - both friendships and romantic relationships.  But what the research into outcomes for adults with autism shows us is that these folk are in a minority.
I recently discovered John Cacioppo.  He is one of the founders of the field of social neuroscience.  So where a neuroscientist focuses on single organisms, this fella looks at how 'social species create emergent organizations beyond the individual' noting that 'these emergent structures evolved hand in hand with neural and hormonal mechanisms to support them because the consequent social behaviours helped animals survive, reproduce, and care for offspring sufficiently long that they too reproduced.'  (I quoted that from Wikipedia....and now my brain needs a rest).  I think this means that as humans created social structures (because we are wired to be social), our brains evolved in parallel (we developed a social neural network) and this social interaction paid off because it improved our ability to survive and flourish as a species.
Prof Cacioppo has written a book called Loneliness: Human Nature and the Need for Social Connection......one for my bedtime reading list methinks.  He's featured at the end of the clip below.  The clip shows two brothers - one with Asperger's syndrome and one typically developing.  Jason, the young man with Asperger's shares how he is unable to read other's emotions and how this causes confusion and frustration for him in social situations.  Jason's brother Brandon describes Jason as 'one of the loneliest people I've ever met' because he is unable to connect with others.

Without friendships, people suffer in ways that science is only just beginning to understand.  Chronic loneliness is associated with a variety of mental and physical conditions: heart disease; diabetes; dementias; accidents; suicide.  We are at risk as much from loneliness as we are from smoking.
The pain of isolation experienced by some people with Asperger's syndrome is plain to see in the comments on this blog.
So......if we know all that, and we know that most people with autism struggle with friendships and relationships because of the impact of their condition, then why isn't there more of a focus on helping people with autism to understand and manage emotions, to develop social reciprocity, to master the milestones that help all of us to successfully navigate (and enjoy) the social world?
Anyone with any ideas about how we can work together to influence the movers and shakers in the autism world to be more proactive around this issue, please let me know in the comments :)
PS One of the first steps in understanding and managing emotions and developing social reciprocity is to master joint attention, a milestone most people with autism fail to master or only partially master.  I have started a petition to raise awareness of the need for interventions that focus on mastering joint attention.  If you live in the UK, please sign and ask your family and friends to sign.


  1. Some really thought-provoking ideas here, Zoe. I think you have to be a bit careful about definitions though. In the video Cacioppo made an important distinction between loneliness and isolation. People with Asperger syndrome can certainly tend to be socially isolated - which in itself can lead to health problems because of diminished social support networks. But I don't think it's safe to assume they always feel subjectively lonely as a result - which seems to be the focus of Cacioppo's work.

    Also, although joint attention is an important step in the usual development of social interaction, it's likely to be absent or delayed in some children *for a reason* - as far as we know it isn't a hard-wired behaviour, it's learned. Since many people with autistic characteristics also have different auditory and visual processing, it's more than likely that difficulties with joint attention are an emergent property of problems picking up primary cues, like what the parent is looking at/talking about/pointing to.

    It's also possible that those visual/auditory problems are underlying the difficulty some people with autism have in reading facial expressions. Or in some cases, recognising faces. So it would be interesting to see what sort of impact joint attention training has on later social interaction/ability to read facial expressions. Do you know if anyone's done any work on this?


  2. Thanks for your comments Sue. I wasn't meaning to imply that all people with Asperger's/autism are lonely, sorry if that wasn't clear.

    I'm not sure that Cacioppo has studied people with autism (in fact, I was thinking it would be really interesting if he did factor autism into his studies). As far as I'm aware (but I need to read more), his studies seem to focus on loneliness in typical people.

    I agree that joint attention isn't hard wired, but I do think the propensity for joint attention is hard wired, because studies in utero have shown that humans are hard wired for social interaction and joint attention is a key part of the development of social interaction.

    I think the reason joint attention (JA) is absent or delayed is because the developmental milestones that lead to JA are absent or delayed. For example, a child who has not mastered social referencing will not be able to progress to JA. In autism, the whole process for mastering milestones relating to social reciprocity and flexibility breaks down because the autism gets in the way of the special parent/child guiding relationship that enables these milestones to be mastered. More about this here:


    Also I do wonder whether we can actually 'train' kids in JA.....or whether we should be guiding them within co-regulatory frameworks that enable them to naturally develop JA, having worked firstly on mastering the other milestones that underpin JA.

    I agree that the visual and/or auditory problems that some people with autism experience will get in the way of reading facial expressions (and all those other parts of non-verbal communication that are so crucial to the whole communication package).

    In terms of your question about what impact joint attention training has on the later ability to read facial expressions....from my (RDI/developmental psychology) perspective, JA cant develop without the person's ability to read facial expressions.....because from a child development perspective, the reading of facial expressions (via social referencing) comes first. Hope that make sense :)

    Thanks for taking the time to share your thoughts, I appreciate it. Feedback and discussion always welcome!!

  3. Social skills training can really help people learn some of the rules of friendships and relationships, but you know, we shouldn't impose any belief or expectation of social norms onto anyone. Social rules and the rules of relationships are socially constructed, you only have to look at the high divorce rate and the difficulties many people on or off the spectrum have maintaining relationships to see that. Family and friendships can be difficult for all of us, loneliness isn't exclusive to people on the spectrum, and I think the difficulties often arise because people on the spectrum need to shape relationships with their own structure and conditions and on their own terms. There can be a real lack of reciprocity and feedback, and as a parent of a son with Aspergers, I think its the people who are not on the spectrum who need help to understand that some of the conventional social rules just don't apply.

  4. Hi Jolene and thanks for sharing your thoughts :)
    I agree that relationships can be difficult for all of us and as I said in my blog, there are some people with autism who are very successful in relationships (probably more successful than NTs in some cases). However, my personal worry is that these folk are such a minority and I think its unfair, if we know how to help people with autism develop what they need to be more successful in relationships, that we don't help them. I think this discriminates unfairly against people with autism.
    I'm not sure that 'some of the conventional social rules just don't apply'. I do think that people with autism should be given understanding and accommodations where they need them....if that's what you mean by 'conventional social rules don't apply', then I am in agreement.

  5. I've got Asperger's syndrome and I once went four days without saying even one word to another human being...not by choice, but by circumstances.

  6. Hi Lee

    Thanks for sharing. I'm guessing that might have been tough.

  7. Hi Zoe

    Thanks for the prompt reply. Sorry it's taken a while to get back to you. It's surprising how many studies of human functioning *still* seem happy to generalise from a small sample to the whole population.

    I agree that it's the propensity for joint attention that could be the problem, and that developmental milestones would be involved if the development of JA was built on them. But that begs the question 'why would developmental milestones be absent or delayed?'

    You say that studies in utero show that humans are hard wired for social interaction; I'd be very interested to see some examples. From what I've read, social interaction appears to be a highly complex emergent property of lower complexity functions.

    For example, reading facial expressions is dependent on efficient visual processing of faces, and around 3% of the population is estimated not to be able to process visual information about faces efficiently - whether that results in not recognising familiar faces, not recognising changes in facial expression or not even being able to see all facial features simultaneously. In other words, it's a visual processing problem that results in a social problem. Social referencing could be impaired, but not because there's an underlying social problem, but because the visual impairment has resulted in an impairment in social referencing.

    Any thoughts?


  8. Hi Sue - interesting discussion :)

    The first question, ‘why would developmental milestones be absent or delayed’ needs more space than I have here, so I’m going to do another blogpost on it. I'm intending to reproduce a section of an article I wrote that was published in the journal ‘Good Autism Practice’. I can’t reproduce it without permission, so I’m just waiting for that.

    I agree with your second point in relation to your statement ‘From what I've read, social interaction appears to be a highly complex emergent property of lower complexity functions.’

    But the propensity for social interaction....what starts it off....is that we are hard-wired for it. If we weren’t hard wired for it, how would it emerge in the first place?

    Re: ‘You say that studies in utero show that humans are hard wired for social interaction; I'd be very interested to see some examples’

    One such example can be found here http://www.plosone.org/article/info:doi/10.1371/journal.pone.0013199 showing the propensity to socially oriented action is present before birth (it’s amazing isn’t it?)

    In relation to your comment on visual processing of faces I think yes, social referencing could be impaired in some cases because visual processing is impaired but to know if that is the underlying cause of all social interaction difficulties in autism we would have to show that visual processing (as distinct from social processing) of faces is impaired in all people with autism. I’ve not heard that that is the case. Plus, there are some people with visual processing impairments who do not have autism e.g. many blind people. In ‘The Cradle of Thought’, Peter Hobson recounts an interesting study he did of blind children that concluded (amongst other things) that blindness per se is not sufficient to lead to autism because there are ‘alternative ways to help a constitutionally social child to coordinate her own attitudes towards the world with those of someone else.’

    And clearly – there are many blind adults who have had no intervention and are fully able to engage in interpersonal engagement......because they have that hard-wired propensity to social engagement regardless of their blindness.

    I think the key here is ‘constitutionally social’ i.e. a child whose hard-wiring for interpersonal engagement has not been impaired, as it is in autism. Peter describes it as being 'gripped' by other people.

    And because the 'grip' is only impaired, not completely absent (i.e. it is weak), it is possible (in many cases, I would argue) to strengthen the 'grip' to enable to interpersonal engagement that leads to the mastery of missed milestones. More on this in the upcoming blogpost.

    Zoe 

    1. Hi Zoe

      Thanks for being willing to discuss this! A few points, in two parts...

      part 1

      About social interaction you ask 'If we weren’t hard wired for it, how would it emerge in the first place?' One answer is that we could be hard wired for things that develop into social interaction. None of flour, butter, eggs or sugar resemble a cake, but mix them together in the right order and put them in the right environment (a specific temperature range) and they will develop into a cake where there was no cake before.

      In the twin study, if your definition of social behaviour includes 'active orientation towards a member of own species', then yes, you could say that the twins behaved socially. But what the researchers actually observed was active orientation towards the other twin. Organisms far less sophisticated than a 14-18 wk old human foetus show active orienting behaviour; towards (or away from) light, sound, heat, contact or along chemical gradients, and often use the last means to locate food and/or members of their own species. In other words, orientation can lead to the development of a number of more complex behaviours and social interaction is only one of them. The researchers are careful to use 'social' in quotes because they know this conclusion depends on how you define 'social'.

      What you could safely conclude from this study is that human foetuses show a preference for interacting with a complex object (a twin) rather than a simpler one (the uterine wall). People used to think that goslings following their mother was a hard-wired social behaviour until Lorenz demonstrated that goslings would follow the first large object they saw after hatching - that included his boots. There was hard-wiring, and it led to social behaviour, but it wasn't social per se.


    2. part 2

      Re visual processing of faces, you say: "to know if that is the underlying cause of all social interaction difficulties in autism we would have to show that visual processing (as distinct from social processing) of faces is impaired in all people with autism."

      I didn't claim that impaired visual processing of faces was the cause of 'all social interaction difficulties in autism', but that it could, given its prevalence, be a contributory cause of impaired JA. In other words, that there might be a cause of JA that isn't 'social'. I also see my earlier cake analogy as applicable to autism. You can make cakes using all kinds of different ingredients and methods and they are still called cakes. I've seen no research demonstrating that everyone with autism has the same autistic characteristics nor that those characteristics have been caused by the same things in every case. The evidence points to just the opposite.

      You'd be right to discount visual processing because of blind people who don't have autism *if* visual processing was a single thing that people either have or don't have. But it isn't. It's very complex and different components can be impaired in different ways. Different impairments can lead to different problems. As you say, Hobson points out that "blindness per se is not sufficient to lead to autism", but Hobson & Bishop (2003) note that a proportion of children with VI do show autistic characteristics. Of course if someone with known VI displays unusual social interaction, people tend to attribute it to their VI, not to 'autism' unless the autistic characteristics are very marked.

      There are indeed people with VI who are "fully able to engage in interpersonal engagement"…… but it isn't safe to conclude from that it's "because they have that hard-wired propensity to social engagement regardless of their blindness" until that's been demonstrated. At the moment social hard-wiring is just a hypothesis.

      Hobson, R.P. & Bishop, M. (2003). The pathogenesis of autism: Insights from congenital blindness. In U. Frith & E. Hill (Eds.), Autism: Brain and Mind. Oxford: Oxford University Press.


  9. Hi again Sue

    Re 'If we weren’t hard wired for it, how would it emerge in the first place?’ and your components of a cake analogy, I think we are more or less on the same page......for the cake components to be there, we have to be hard-wired for them to be there.

    In relation to the comment that the Castiello study only shows that the twins in utero preferred an animate object (their co-twin) rather than an inanimate object (the uterine wall), the study predicted, looked for, and found specific kinematic patterns related to the social end goal of the movements of the twins in utero.

    Re ‘there might be a cause of JA that isn't 'social'. I don’t understand this comment, sorry. Do you mean that JA might have a function other than a social one?

    I don’t find it surprising that Hobson & Bishop (2003) note that a proportion of children with VI do show autistic characteristics. This is one of the key points made in Hobson’s book ‘The Cradle of Thought’. Blindness (and to a lesser extent, severe VI) result in a delay to the development of symbolic play (a key developmental milestone).....so when blind children relate to objects and events, they are often not aware that these objects and events may also be at someone else’s focus of attention. ‘They are more or less deprived of the experience of shifting perspectives on objects, events and themselves through identifying with the attitudes of others’. It is inevitable that some of these blind/VI children are going to show characteristics of autism.

    Re the original first point about why developmental milestones would be absent or delayed, I have permission to reproduce the part of the article from GAP and will post it to my blog as soon as I have time.

    1. Hi Zoe

      Hard wiring: I'm not saying that *nothing* is hard wired - obviously some functions are because babies tend to be born with working brains. What I am saying is that some higher-level functions might not be hard-wired. Anything that requires learning, such as walking and talking would be a candidate.

      One of the ingredients of the walking 'cake' is the step reflex, present at birth, but the step reflex itself is a function of the mechanics of the human leg. An important ingredient of the talking 'cake' is babbling, but the universal first babbling sounds made by babies the world over are the result of the easiest movements made by the human mouth. Babies build on these by-products of their anatomy and physiology to develop walking and talking, but it doesn't mean that a propensity for walking or language are themselves hard-wired, because walking and language don't emerge until babies are several months old. Similarly, babies build on reflexes like tongue-protrusion and on a preference for familiar visual patterns (such as face-type patterns) to develop social skills, but it doesn't mean a social propensity itself is hard-wired.

      What the Castiello infants preferred was a complex, dynamic stimulus. That's all you can say about their preference. If there had been a complex inanimate object in utero instead of a twin, I'd be prepared to bet they would have preferred that to the uterine wall. A 14-18 wk old foetus can't have an 'social end goal' because it doesn't have enough information about the world to do so.

      Re JA having a non-social function. Acquiring information is an obvious one. If a significant other is paying attention to an object, JA would result in an increased likelihood of the infant learning about something worth paying attention to. That's an information processing function, not a social one. There is a social element, to be sure, but it isn't the only element, and there are possible causes for delayed JA other than a social one.

      Re visual impairment: you seem to be suggesting that the only way infants get information is via other people. My experience of toddlers is that they get a great deal of information about their environment, solo. Why do you see other people as so essential to development? Not saying other people aren't needed by toddlers, just that toddlers are capable of independent learning. Just puzzled.

      Doesn't the delayed symbolic play suggest that visual processing could be a possible cause of autism? Interestingly, hearing impaired children tend to be delayed on false belief tests, as are autistic children, often. To me, this is pointing in the direction of sensory processing issues being implicated.

      Looking forward to reading the article from GAP.


  10. I just found your article because I moved across the country during the summer, and have had zero luck making friends in the new state I live in. I'm autistic, and although I consider myself a social person I've always had a hard time initiating conversations/interaction with others, and I'm terrible at small talk. I think the only real way I've gotten by in the past is that I'm lucky enough to be an innately VERY friendly person, and I have (I think) a good, albeit odd, sense of humour. Still, now that I'm a bit older and am no longer in a school or university environment, I'm having a very hard time making friends.
    Some autistic people are fine not having any friends (heck, some normally-abled people are fine not having friends), some act like they are fine with not having friends, and some people are like me -- very lonely and trying hard to interact, but don't even know where to start most of the time.
    You brought up a lot of really good points in your post and gave me something to think about. For me, I know that not reading others' faces well hinders my ability to communicate and connect. It's different for every autistic person, probably, but in my case I have a hard time even looking at a person's face for more than a few seconds. Not only is it distracting and makes it hard for me to listen to the person, but it feels really invasive and I start feeling embarrassed almost immediately. Looking into another person's face can be very overwhelming, emotionally. It's a barrier I've been trying to overcome, but so far all that's happened is that when I make extended eye contact I lose track of what the other person is saying, my face becomes really red, and I stumble over my words or laugh nervously for no reason. This probably makes it really awkward for whoever I'm trying to talk to. I'm saying all this because hopefully it can give you some insight. I think the best place to start with issues like this is to try to find autistic people to communicate with directly (in whatever manner they communicate best, if they are able). Also, something I thought you should know: every other autistic person I've ever spoken with prefers the term "autistic" instead of "person with autism" or anything along those lines. We see it as an intrinsic part of who we are, not a separate thing we carry around with us -- it's more like a brain type or a way of functioning, not necessarily an illness. It would be so greatly appreciated if you'd take this into consideration and perhaps even inform others. It seems like a small thing (autistic vs. person with autism/person who has autism/etc.), but its impact can be pretty big, and it would mean a lot if you'd think about changing the way you phrase this. :) Thanks for your article.

  11. Hi Chama
    Thanks for taking the time to write a response :) Re language used in the article (and generally) I've also heard it said by other people with autism/autistics that to be described as 'autistic' is offensive as they feel defined purely by their condition, and they feel there is more to them as people than their condition. Its difficult isnt it? I think the general rule should be to describe people in the way that they are comfortable with......but the problem is that we dont always know what people are comfortable with. Writing an article is a good example as it can be read by those who identify as autistic and those who identify as having autism. Interestingly, the UK's National Autistic Society have just done a survey about this very issue - it'll be good to read who says what about how autistics/people with autism should be described.
    I can also appreciate what you have written about looking at peoples facial expressions and being overwhelmed by them. I think for anyone working with a person with autism/autistic its imperative to take on board any difficulties they have in this area and certainly not to put them in a position where they feel uncomfortable. It wouldnt be good practice to force anyone to employ social referencing/make eye contact if it was overwhelming for them. I've not come across this myself yet in anyone I've worked with but I do know other people who have and I know they have had success with using strategies that introduced social referencing gently and slowly so that it wasnt overwhelming. In fact I admit that this is intriguing me now and I'm consulting (on a facebook page full of wiser folk than I) about exactly how parents and practitioners have helped people to work on this.
    I do know that the first thing that should be done is to establish trust and what you've said about communicating in whichever mode the person feels most comfortable with fits in with that and makes a lot of sense.