5. Looking back

It has taken me a while to write this post, as I have dug down deep into what I know of my past family history to reevaluate the behaviours of relatives living and deceased, in order to draw a parallel with present day findings.  Autism is known to have a genetic link and it is for this reason that I felt the need to look back over time at my family history. The genetics passed down through generations of my family resulted in a few relatives showing signs of vulnerability, a rigid way of thinking, a lack of creative thinking, etc. Most demonstrated a victim mentality at various points throughout their lives.  Due to their cultural heritage family members were labelled as ‘mad’, ‘paranoid’, ‘schizophrenic’, etc, with detrimental results.  Yet the mislabelling of these behaviours under mental health is still likely to occur today.  Looking back much of the behaviour of these individuals has parallels with being on the autistic spectrum, especially as the majority of them were reasonably bright, holding down high level middle class jobs.  It was the result of how their nervous system functioned which ultimately brought shame upon them and our family over time.

Some of the behaviour with similarities to being on the autistic spectrum included that already mentioned, as well as the occasional lack of personal hygiene, what we know today as OCD type behaviour, ADHD, meltdowns, and a determination to dig their heels in. Family traits included talking a lot from a very young age, a great sense of humour, a youthful demeanour even in to their 90s and heightened anxiety – in fact this was at the core of their being. Some had sensory issues and all were intellectually above average. However, even though they were sociable, all struggled to integrate socially and be accepted by their peers.  Problems arose with neighbours, work colleagues, friends and family due to oversharing. For those of you not familiar with this term, this means giving away too much information about themselves and others, crossing boundaries and sociably unacceptable behaviour.  All were equally taken advantage of.  Some had many friends and some none at all.

There was and is also an aloof personality trait in some of these relatives.  A 1997 study in the journal Psychological Medicine found that parents of autistic individuals were ‘more aloof, tactless and unresponsive’ than those of non-autistic individuals. The inability to connect to their feelings is a common trait amongst some on the autistic spectrum. It also begs the question – how much of this is learnt behaviour?  If you live with a mother, father or sibling who is devoid of emotional expression because they do not know what they are feeling, how can you learn to do otherwise? Surely this must exacerbate what is already a genetic issue?

I can only be thankful that in 2016 the spotlight has been shone on Autism in the UK.  Those who have hacked in to USA security IT systems have brought it to the attention of the media and a recent television drama has highlighted the condition.  Well known cinemas have created autism-friendly environments so that people with this condition can enjoy watching movies. However, there is still a lot that needs to be done especially within education and the workplace. For example only 15% of people on the autistic spectrum are in work. With the exception of a small group of borough councils, I do not feel confident that special educational needs (SEN) cater for children on the autistic spectrum, nor that schools are willing to accept this type of child.  I am about to embark on the journey to find the next school for my niece, which includes the fight to get an EHCP (an Education, Health and Care plan = a passport granting access to SEN services).  Even the psychologist who diagnosed my niece was very quick to say she did not need one, possibly because the extra funds that she would qualify for might deny him a much needed member of staff!




About 95 Frames per Second

This blog is about my caring journey, looking after family members with high functioning autism / aspergers, multiple sclerosis, getting older, etc. in the midst of trying to function as normal. Hopefully along the way you will find my experiences useful. 95 frames per second is roughly the frame rate life runs at.
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