TL; DR – Loneliness and Social Isolation as a Risk Factor for Mortality

Holt-Lunstad, J., Smith, T., Baker, M., Harris, T. and Stephenson, D. (2015). Loneliness and Social Isolation as Risk Factors for Mortality. Perspectives on Psychological Science, 10(2), pp.227-237.


 

What?

A meta-analysis of studies into the effect of social factors on mortality, with a focus on social isolation. This area has received less interest in research and literature than other factors such as smoking, obesity, and sedentary lifestyles. There have been some studies which suggest that social connections have an impact on mental health, emotional well-being, and physical health.

 

How?

70 studies were included in the meta-analysis, with participants with a mean age of 66 years at initial contact and a mean length of 7 years as a follow-up. The total sample size was 3,407,134. 63% of the studies involve standard community samples, 37% involved patients with medical conditions.

Measures such as the Social Isolation Scale, the Social Network Index, and Loneliness Scales were used to give measurements on social connectedness and social isolation.

Studies where mortality was the result of suicide or accident, were excluded from this meta-analysis.

 

Findings?

  • Social Isolation, loneliness, and living alone resulted in a higher likelihood of mortality, regardless of whether the measurement was objective or subjective.
  • The statistics reported for increased risk of death were:
    • 26% for reported loneliness
    • 29% for social isolation
    • 32% for living alone
  • Those who were social isolated, lonely, or living alone were more likely to be dead by the time of the follow-up than their counterparts, regardless of age or socioeconomic status.
  • Middle-aged adults were at greater risk of mortality when lonely or living alone than any other age group in the meta-analysis.
  • Fully adjusted models which accounted for health status, or studies which did not include physically ill individuals still found social isolation and loneliness to be predictive of mortality.

 

Limitations?

The meta-analysis could not confirm causality.

This meta-analysis could not identify any “threshold” for social isolation at which increased mortality risk occurred – given the complexity and individuality of the matter; it is unlikely this threshold could accurately be identified even in future research.

Most of the studies online looked at one of the three factors: social isolation, loneliness, or living alone. Therefore it was not possible to identify one of the three as a greater risk factor than the others.

91% of the studies involved people younger than 50 years of age – future research should include participants from a broader range of age groups.

 

Why is this relevant to autism? How is it relevant to practice?

The National Autistic Society surveys regularly find that autistic people report being lonely and isolated more than the general population. Some autistic people like to be on their own for long periods of time, others are expected to feel like that because of the stereotypes around autism.

Assumptions should not be made about what friendship or socialising means to an autistic person. Try to find out what they want out of friendship and see if that is possible, or if a compromise can be made.

Being involved in the community can help reduce isolation – too often people with profound or severe learning difficulties are not involved in their community at all.

Let’s just ignore it…because that always works so well.

Stepping out of the rantings about autism for a while, I had a frustrating moment earlier in the week concerning the gay community. There have been a few studies now that have indicated that domestic abuse is markedly higher amongst lesbians than any other combinations of partners.

No-one but those with an anti-gay agenda seem to want to talk about it. I watched as someone on a popular social media site was downvoted for even suggesting that it was an area that warranted additional studies. I’ve seen others just be shut down and called homophobic for bringing up the increased odds. The thing is, not talking about it is not going to make it go away anytime soon.

At university, I knew of two other women who were being domestically abused by the women they were dating. Neither situation involved physical harm, so the other people who knew them just accepted it as part of “dyke drama”. My partner, prior to meeting me, was in a domestically abusive relationship with a woman – what had started as two awkward sexual liaisons was now a “friendship” with all the hallmarks of an abusive intimate relationship. When my partner started going out with me, that escalated to physical abuse. Which was the point at which something was finally done.

Domestic abuse needs to be talked about. Maybe the studies showing this data have methodological flaws, or may there’s confounding variables that mean that the statistics aren’t as straight-forward as they seem (which is usually the case for statistics), but I am sure that some people are reluctant to talk about this topic because it looks like yet more ammunition for homophobes to berate and condemn our relationships – but the abuse won’t stop just because no-one is talking about it.

TL;DR – Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders

Reference: Van Wijngaarden-Cremers, P., van Eeten, E., Groen, W., Van Deurzen, P., Oosterling, I. and Van der Gaag, R. (2013). Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis. Journal of Autism and Developmental Disorders, 44(3), pp.627-635.


 

What?

A meta-analysis of studies into the effect of gender on autism. Current findings on whether there is a gender difference are inconsistent. To investigate further, the meta-analysis also looked at the effect of age in conjunction with gender.

 

How?

The meta-analysis looked at 22 studies which reported on gender differences in social and/or communication deficits, and differences in repetitive and stereotyped behaviour. Due to the variation in the studies the following data was used:

  • For social deficits, there were 4,783 test scores from males and 1,277 test score from females
  • For communication, there were 2,781 scores from males and 992 for females
  • For repetitive and stereotyped behaviour there were 2,093 scores from males and 781 scores from females.

 

Findings?

  • The meta-analysis found very few differences in symptom severity between males and female.
  • Symptom severity in communication and social behaviour was similar between genders, girls showed less restricted interests, behaviours and stereotypes than boys. This difference was not significant below the age of 6, only after.
  • There are three hypotheses for this difference:
    1. Females present with a different autism phenotype to males
    2. Female ASD patients with Intellectual Disability may be over-represented in the studies used, and stereotyped and repetitive behaviours are not ASD-specific – they also present in ID.
    3. Females with less severe social and communication deficits were misdiagnosed with other conditions and therefore not included in these studies.

 

Limitations?

May have been false-positive ASDs among patients with restricted interests and behaviours and stereotypes as there was an over identification of these symptoms as autistic traits when they are also common in some regularly developing children, and those with Intellectual Disability or who experienced deprivation.

Females with normal to high intelligence may have been missed from the meta-analysis.

Intellectual Disability as a confounder could not be controlled for with the data available.

 

What to take from this for practical use?

Girls and women may present differently in terms of social and communication difficulties.

Girls with normal or above intelligence may exhibit less repetitive behaviours, it may be more difficult to identify ASD traits.

Repetitive behaviours and interests alone are not ASD, they are equally common in other conditions and in some typically developing children.

Even if there are some presentation differences, women and girls with ASD do still have (and still require for diagnosis) social and communication difficulties, and repetitive interests, behaviours or thoughts.

TL;DR – Meeting the Common Core State Standards for Students with Autism

So many journal articles – once published – just sit on a shelf and never get read by the very people who might benefit from any practical information gained by the research. That’s without thinking about the additional barrier often posed by overly complicated language or terminology. Research needs to be done for a purpose, and that information needs to be disseminated. So this is my attempt at doing a bit of that.


Reference: Constable, S., Grossi, B., Moniz, A., & Ryan, L. (2013). ‘Meeting the Common Core State Standards for Students with Autism: The Challenge for Educators’, Teaching Exceptional Children, 45(3), 6-13.

Country of publication/research: USA

Topic: Adaptations which can help autistic students meet the Common Core State Standards. These are details about what students should know in English Language Arts and Mathematics by the end of K-12.

Summary of content:

  • The adjustments to the Elementary and Secondary Education Act (now called the Every Student Succeeds Act) means that many students with SEND in mainstream classrooms will be expected to meet the Common Core State Standards.
  • If teachers understand the three main psychological theories of autism (Theory of Mind, Executive Dysfunction, and Weak Central Coherence), they might be able to improve their teaching of these standards and personalise them to autistic students..
  • Includes brief discussions on how the three theories might cause difficulties in the area of English – with a focus on reading – and gives examples of students and difficulties involving these.
    • Theory of mind: May find it difficult to interpret the actions of others, may not understand the impact of own actions on others, may find it difficult to interpret thoughts, feelings and intentions of characters.
    • Executive dysfunction: May have difficulty in planning, organisation, initiation, working memory, inhibition or impulse control, time management, and developing and using new strategies.
    • Weak Central Coherence: May focus on a single aspect of something (a place, a topic, a piece of text, a picture, a documentary etc.) to the exclusion of other relevant details.
  • Gives examples of how these areas of difficulty might be supported:
    • Social Narratives (Social Stories and Comic Strip Conversations)
    • Naturalistic Interventions (teaching skills in the daily routine and using interests as motivation)
    • Peer-mediated instruction and intervention (using peers to explain and model behaviour and new skills)
    • Visual supports (such as a graphic organiser)
    • Prompting.

Biases or issues with method:

Rigid view of autism – makes sweeping generalisations such as autistic children “don’t understand how actions impact other people”.

Only considers autistic students who are already accessing the Curriculum with their mainstream peers.

What to take from this for practical use:

Social Narratives (google: Social Stories and Comic Strip Conversations) can help with developing Theory of Mind and understanding.

Visual Supports can and should be used to support executive dysfunction.

Don’t forget to ensure that peers are helping each other – overreliance on an adult is not of benefit to anyone.

“I don’t think low-functioning autism is true autism”

Yes – I have read that (more than once although the wording was slightly different) online from an autistic person.

The endless battles over functioning levels or different types of autism do not seem to be going away any time soon. It’s understandable because it is an incredibly difficult concept to understand. There were times when I was supporting students that I found it so hard to understand how we could share a diagnosis of Autism Spectrum Disorder. Combine that with research that seemed (at the time) to indicate identifiable differences in Aspergers and Autism and PDD-NOS, and it’s easy to understand why just lumping them all together under one umbrella term in the DSM-5 hasn’t gotten rid of the intense discussions.

Statements like the one I put in the title are not that common – but the fact that they exist indicates that not everyone is happy about the merging into a single diagnostic terminology. This particular statement actually appeared in a thread where some people were trying to argue that autism was an amazing, positive experience for everyone. Understandably some people disagreed. The discussion moved (as they often do) to the comparison between “high-functioning” and “low-functioning” autism – and out came the line “I don’t believe low-functioning autism is true autism”. I’ve seen many lines of argument within the autistic community – but not often do I see people effectively “undiagnosing” huge numbers of people from the spectrum just to drive their point home.

Whatever terms you do or do not want to use, autism is a spectrum. Sometimes or for some people, it’s a positive thing – little more than a difference in perceiving the world, for others it’s a negative thing that affects every part of their lives and makes them miserable. You often see these two different groups of people arguing about this very topic on autism message boards. Then there’s everyone in between who tend to avoid getting involved in the arguments.

You don’t get to tell people how they experience their condition, and you certainly don’t get to ignore a huge proportion of the autistic spectrum just to make your point.

Cuts, cuts, cuts…

I imagine that a similar situation is playing out in other countries around the world right now – but this week for me has been a week of watching the funding for services for people with special educational needs or disabilities get cut.

I left my job working in a school because I could no longer cope with the disaster that was the special educational needs department. Even with distance I am kept up-to-date with the chaos through my old colleagues (don’t join a WhatsApp with old work-mates if you want to be kept “in the dark” about this kind of stuff). I read as teaching assistants were cut, resource budgets were cut, as students were reassigned again and again. I read about students I used to work with displaying increasingly disregulated behaviour – lashing out, biting, hitting – as their whole academic world was restructured around them. I read about teaching assistants being told they were now responsible for two or three students with moderate to severe special educational needs. I read about old colleagues getting sick, getting hurt, developing mental health problems…

Then in my current job I watched it from another angle – I watched as the news unfolded about projects designed specifically for people with disabilities being cut to make room for more “relevant” work. I watched as the organisation released blog posts and twitter posts. I realised that the projects for those with disabilities was being cut because they didn’t bring with them big headlines; they didn’t get the kind of attention the organisation wanted.

It doesn’t take much searching online to discover story after story about the failings of the SEND system; about the cuts to services and projects designed for people with disabilities. If you really want to you can find pages of how schools are at breaking point – and how this is failing students. What makes this even harder to deal with is the fact that the UK is actually quite far ahead of many other places worldwide when it comes to special educational needs and disabilities – and then you hear stories about how much worse it is in those other places.

I saw things that made me angry during my time in special education – I dread to think how much worse things will get if these cuts continue.

Double standards confuse me…

I came across a post a while back that I was reminded of earlier today, that discussed various different trackers or alarms to alert people when people with autism or alzheimer’s or general dementia were at risk of wandering. The post itself was not what interested me the most – rather the comments in response to it were.

Most of the comments immediately jumped onto the idea that these gadgets would be misused by abusers, that people (particularly autistic people) who wander are usually trying to get away from abusive situations, that these gadgets were terrible and anyone who put one on their relative was a monster.

Right – so the response were an over-exaggeration absolutely but you can see the potential amongst a small group of people to abuse a gadget such as this.

My issue came with the fact that I had previously seen the same commenters defend Facilitated Communication as a completely valid means of communication that should be accepted – quoting ASAN’s “assuming competency” stance on the area of Facilitated Communication.

Yes that’s right – they were outraged by the existence of a gadget designed to prevent wandering which (as far as I can find – send me any news stories if you know any) has not been associated with any allegations of abuse, but are positively advocating for a disproven method of communication that not only has no empirical evidence going for it, and has been shown time and time again to almost always be the prompter doing the communicating (most studies come back with 100% rates for this), but has also been linked to false allegations of abuse, justifications for sexually abusing autistic people, and the murder of at least one child.

It’s good to be critical and think logically about the potentials for abuse – but to dismiss one thing simply for having the potential to be abusive and being completely accepting of another thing that has been proven to be abusive isn’t just hypocritical – it’s ridiculous.

Where are all these resources?

I’ve seen comments online a few times that basically say the same thing “There are loads of resources for low-functioning autistics/autistics with intellectual disabilities and nothing for the rest of us”. That’s usually then qualified by them not liking functioning labels and so on but you get the general idea.

What I want to know is where are all these resources for autistic people with intellectual disabilities? In my experience, there aren’t that many of them – particularly when it comes to things like books, lesson plan, and curriculum resources.

For the sake of this post, I’m going to use the three support levels for autism in the DSM-5 even though they’re not particularly useful for individuals, they serve the purpose for classifying books:

Support Level 1: There’s a lot of books and resources here for students, especially primary school students. There’s also a lot of books and resources aimed at this support level for interventions and strategies. There’s less for teenagers and for adults but you can find a range of autistic authors offering advice aimed at this support level.

Support Level 2: Again, a reasonable amount of books aimed at supporting students and children. Quite a lot of books on visual supports and strategies. This area is quite short of books for autistic teenagers and adults though. There are some autistic authors offering advice at this support level but it’s significantly less than support level 1.

Support Level 3: Very little in terms of books or resources for students. I looked for them for a long time. Books like Tasks Galore and the Intensive Interaction books definitely are useful for this support level, but beyond that it’s quite limited. Strangely enough this support level has a few more books for teenagers at level 2 – and more books on sex education and autism from what I’ve found (of course, SRE is vastly under-resourced so when I say more books I pretty much mean 5 or 6 books instead of 1 or 2). Almost nothing for adults.

When these people protest that there’s loads of resources and focus on “low functioning autism” and nothing for everyone else, I have to really wonder if they understand the full scale of the autistic spectrum. Maybe that’s the issue with the spectrum? The idea of a spectrum is too limited (this we know). All I can say is that when you’re supporting an individual with severe sensory issues, who struggles to functionally communicate, is greatly impaired in receptive communication, has enormous difficulties in fine and gross motor skills, will likely never engage with the National Curriculum (for students), and will need round the clock care more most if not all their life…then you do kind of wish that these claims of “loads of resources” were true. Unfortunately it’s not and people who need help are not getting the help they need and deserve.

Lack of empirical evidence

There are some places online within the autism community where it would appear that if you don’t follow that particular group’s hive mind towards certain methods like Rapid Prompting Method – you might as well just not go there.

For those who don’t know, Rapid Prompting Method is a method of communication devised by Soma Mukhopadhyay that helped teach her autistic son to communicate. It typically involves the use of letter board, keyboard or ipads. So what’s the problem? Well – it lacks any empirical data for actually working and the studies that have been done on it are few and far between (not to mentioned largely associated with the HALO Centre where RPM and Soma are based -you see the conflict of interest I’m sure). If you Google around you can find a number of blogs which make the claim that they are written independently by people who learned to type using RPM. That’s fine, but it’s not exactly evidence because I could upload a post telling you all that I am non-verbal and learn to communicate using RPM – it’s easy to lie on the internet, people do it every day. There are a few videos as well – and these are much better. Of the range of videos I’ve seen there are perhaps half that I am happy to accept as evidence of independent typing? A lot of the videos that I don’t consider good evidence involve a person holding and moving a letter board around as someone points, and many of those have multiple instances where the individual communicating points at a letter or multiple letters that aren’t read out before landing on the “right one”.

So dubious evidence at best, but it’s certainly got the potential to teach non-verbal people to communicate via pointing or typing. The other issue many other people have is with the similarities between RPM and Facilitated Communication, the latter of which has been linked to a wide range of abusive incidents and false allegations. It certainly seems a bit more difficult to manipulate what a person is communicating with RPM, but it’s not impossible. Given that a number of autistic people have been abused as a result of FC, and at least one boy was murdered, you would think that a cautious and collected view of RPM would be the norm?

Well – it is mostly, but there are absolutely some parts of the autism community who are not only adamanant that it works but who figuratively tear apart anyone who displays any kind of doubt over it. There’s always that same phrase of “assume competence”, and you know what – that’s a nice phrase but it doesn’t always work. Say for example we get someone using RPM who expresses a desire to be involved in a sexual relationship with the person who helps them communicate (an incident that has occured in FC), I want to be damn well sure that the person communicating is the person who thinks and feels that before I’m going to be okay with it.

For all the arguments from the autistic community about respecting everyone on the spectrum, when people argue so aggressively and rigidly about how RPM should be used with all non-verbal people I can’t help but feel like it’s saying that people only have value if they can produce long pieces of prose like Tito Mukhopadhyay and Ido Kedar. Everytime you bring up the fact that not everyone is going to be able to access the National Curriculum or will take a very long time to communicate past the basics of “I want” there’s always someone who crops up and says “Yes but it’s really hard to test the capability of autistic people, look at RPM and what the people who learnt to use it had to say…”, that’s great and everything but it sounds like you’re trying to brush off the fact that some autistic and/or non-verbal people also have severe or profound learning difficulties.

RPM isn’t proven, and even if it does work for some people it’s not going to work for all autistic people. It also needs a damn sight more empirical data before I accept it as a reliable method.

Positive Stereotypes

There seems to be a slight shift recently in the types of news stories involving autistic people. Granted there are still a significant number that focus on everything negative associated with autism, but there’s a different type of article beginning to make an appearance.

The stereotype of autism and STEM.

This upsurge could perhaps be partially attributed to Neurotribes and the discussions of the Silicon Valley that came out of it. Perhaps it’s something else entirely. Whatever caused it, there are now a number of articles about how amazing autistic people are in the STEM fields and how it would serve companies well to follow in the vision of Microsoft and hire more autistic people. Quite a few commenters online have argued that this is a good thing and how we as an autistic community should be supporting this new and positive stereotype.

The problem is, it’s only a positive stereotype if you happen to even vaguely fit the stereotype. So for all the autistic people who don’t excel in STEM subjects, what’s going to happen if this stereotype takes hold? It’s going to be the same thing of people expecting you to be a certain way – like the Rainman problem but from another angle. Other minorities do not seem especially fond of positive stereotypes associated with them – so I don’t see why the autistic community should be either.

There seems to be a real problem with views of autism (both within and outside of the autistic community) being one extreme or the other. Either we seem to only focus on autistic people who have great difficulties in every aspect of daily life and ignore everyone else. Or we focus on those who are in good STEM jobs and who are successful in their daily lives (with little focus on the difficulties they have) and ignore everyone else. So the people in the middle get ignored a lot either way. I don’t think moving from one stereotype to another is ever going to be a good thing, and I think the focus should remain on moving forward in showing just how diverse the autistic spectrum is.