Being Autistic – Making Meaning through Music

Autism was first described as 1943. Autism first described as a condition by Leo Kanner who described autism as a distinct condition in his paper ‘Autistic disturbances of affective contact’.  It wasn’t until 1962 that the National Autistic Society was founded, by 1977 the genetic link to Autism was established and the idea of an Autistic Spectrum emerged in 1979. In late 2008 Cheryl Gillan MP agreed to take forward a private member’s bill on autism in Parliament. In November 2009 the Bill received Royal Assent and became the Autism Act 2009. It was the first ever disability-specific law in England.

I was diagnosed as having High Functioning Autistic Spectrum Disorder (ASD) in theIMG_3949Summer of 2016.  It came as a complete shock to me, but ironically not to most of my friends.  It turns out I’d spent my entire life thinking that everyone else was bonkers, when in fact it was me!  I don’t see myself as “suffering” with Autism, to be fair, it’s those around me who get to suffer, my character can jar with people, despite my best efforts to be nice to everyone.  I don’t think High Functioning ASD was invented when I was a child, children like me were misfits; bookish “social-lepers” who took their beatings quietly and, having survived childhood, went on to be successful adults.

My diagnosis came as part of the journey through the assessment process for my son, Reuben, who although he is not yet diagnosed, is as Autistic as an Autistic thing.  When I stepped back and looked at the situation logically, (as I would), there are a growing number of children with ASD diagnoses.  ASD seems to run in families, Reuben didn’t catch it, he may have inherited some of it but equally he may have learned some of it.  So  I went to see a psychiatrist, not for the first time, I’ve been crippled with anxiety and depression since my early twenties.  He was great, I am, apparently, extremely Autistic and (as he says in my favourite extract of the letter of diagnosis) “ it is testament to my high intelligence that I flew under the radar into my 40s”.  

The traits I show are:

  1. Eating the same meals in a regular pattern and getting excited in anticipation of them tasting exactly the same as they did last time
  2. Hypersensitivity to white noise
  3. Spending my life waiting for other people to catch up with my thinking
  4. Listening to the the same music repeatedly.
  5. Quantifying everything
  6. Categorising every car I see by make, model, year, headlight/tail light shape (even when driving)
  7. Being disconcertingly direct and honest in my communications
  8. Being Gluten and Lactose Intolerant
  9. Using repetitive music to stim.
  10. Mismanaging eye contact – I can do it – but I end up guessing at how long to do it for.
  11. Oh and Listing things.

The psychiatrist said that my brain has to work 10 times harder than a Neurotypical person does to appear to be Neurotypical.  I’m not Neurotypical, I’m Neurodivergent.  I have a gift, a super power.  I am blessed.  I am also cursed with the anxiety that accompanies my super powers.  

Anxiety nearly killed me three years ago.  Anxiety used to be my master, I always reacted to it’s arrival, I would become forceful and controlling in order to make the situation that was causing me to be anxious to go away.   My intelligence meant that I would anticipate situations which would cause me to feel anxious and get my retaliation in early, which inflamed situations and made people more wary of me, which made me more anxious and so the cycle continued, spiralling further out of control until I went pop in the most spectacular fashion.  It’s a pattern I see manifesting itself in Reuben’s life, he is riddled with anxiety and it affects his ability to cope with life every day.  Watching the him experience those same struggles is terribly painful.

3 years on, I’m in a much better place.  I’ve learned to recognise when I feel anxious and not to react to it.  I practice Yoga and have learned to regulate my mood. I adopted two IMG_3373beautiful Chocolate Labradors; everything is better if there are Labradors.  I’ve learned to embrace my Neurodivergence and recognise my limits so that I’m not drained by the effort of being  Neurotypical all the time.  Which brings me to music.

It turns out, hindsight being the most excellent way of learning things, that I have always used music lyrics to understand and communicate my feelings.  I first encountered this idea in relation to ASD when hearing about Owen, boy with ASD who chose not to speak. Owen obsessively watched Disney Films and it was one thing the family could do together.   As he grew older he began to speak and it became clear that he was using his understanding of the Disney films and the scripts to make sense of the world.  https://www.theguardian.com/lifeandstyle/2016/dec/03/how-disney-gave-voice-to-a-boy-with-autism  It was reading this story that helped me realise that I do the same with Lyrics to songs.  (It always takes someone else to articulate this kind of thing to me because I have very little innate self awareness.)

That’s what Reuben and I do, but we do it with Music.  Reuben loves music with clear lyrics which address emotional issues.  I’ve taught him to use those lyrics to explain his feelings.  His favourite track of all time is Greatest Day of Our Lives by Take That which he plays whenever he is happy or is expecting there to be a Grand Day Out.  That track was the track we played in the car when I picked him up for the first time in many months, following my break down, a period where I was too unwell to see him.   

“Tonight this could be the greatest night of our lives

Let’s make a new start,

The future is ours to find”

That was then.  Now the future is bright and we have weathered the storm and have more skills to face the storms that the future may hold.  Another band provide the soundtrack to our relationship now.  That is Dreadzone.  I’m utterly and shamelessly obsessed with them.  They have been around for almost 25 years and their lyrics and repetitive sampling meet our needs to express our emotions and stim in a socially acceptable manner.  (Stimming is what Neurodivergent people do to manage situations where they are overstimulated.  Some of us flap, some of us click pens, some spin in circles or bang their heads. The purpose is the same, to block out the channels that are overwhelming us and get some peace.)

Dreadzone have a very simple mantra: Life, Love & Unity.IMG_3776  They preach it at every gig, and as a true Neurodivergent obsessive, I attend about 10 a year, something I would never have done a few years ago, (because people like variety don’t they?)  Now I go and enjoy how much their performance matches their other ones, I can relax and reboot my mind and my spirit to deal with being a Neurodivergent immigrant in a Neurotypical world.  Reuben joins me at as many Dreadzone shows as he can, our mad escapades to see them at festivals and venues around the region are highlights of our year.  The band all know Reuben and make a point of saying hello to him when they see him at the front of the crowd.  

Reuben and I have one special Dreadzone song; Walk Tall, which charts the wisdom that comes from weathering the storms of life.  https://youtu.be/Jut9-Ho2a-E   It samples an amazing speech by Rev Jesse Jackson.  It is the way that Reuben and I make sense of the darkest days of our lives, when the world no-longer made any sense to me, I was utterly broken and those close to me were terrified.  It gives us hope and confidence and a strategy to weather the storms which will assail us both in the future. It describes the pain and fear I experienced in the depths of depression and anxiety:

“I stand alone and face the storm

I raise my hands to the open sky…”

The insight that bitter experience has given me:

“…..Nobody knew, nobody wondered, no-one could see the pressure you’re under…”

Hope that the pain will pass:

“After the rain the fear and the thunder, you must be free to rise again….”

And a plan for weathering the next storm:

“…..No matter how dreary the situation is, and how difficult it may be, that the storm really doesn’t matter until the storm begins to get you down.…. you need to Walk Tall…..”
This wisdom matters. It matters because when I was ill, I thought it was the end of the world.  I didn’t know that there was a way out.  It matters that Reuben knows that there is a way out, that when he is in his darkest place, he can press the play button and be soothed by the words of this song of hope.  There is life after the storm; Life,Love and Unity.  You just have to Walk Tall, try not to control things beyond your influence and ride the storm out.

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