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.