Grief in autism

 

I received some terrible news on Boxing day morning (26th December 2013). My much loved pet rabbit, Ralph passed away from unknown causes. He had been poorly for a few weeks, with sudden, unexplained weight loss, but even after lots of tests the reason could not be found. 

 

This brings me onto the subject of autism and grief. It is a long standing belief that people with autism either do not grieve or do not feel anything when a person or pet dies. This is wrong. Right now, apart from the occasional outburst of tears, you probably wouldn’t look at me and assume I am grieving for my rabbit. My autistic behaviour has become more obvious but apart from that I show few outward signs. Inside my head, however I can assure you I am feeling every emotion possible relating to my bunny’s death. I may not be able to name them (which is a common issue for people with autism which again may lead others to believe the autistic person ‘doesn’t care’) so therefore I cannot tell you what I am feeling. I describe my feelings by what they make me do physically so I have say, crying feeling, Punchy feeling, screaming feeling, self injurous feeling (like hair pulling, scratching myself all over etc.), swirly feeling (when I feel several emotions at once), bouncy feeling, flappy feeling (Those two are happy) and various others. No one else understands what I mean by these feelings so they have to guess what the emotion might be. Even then its still a guessing game as I don’t know what feeling gets what label. It is very frustrating. So inside, my head is in an emotional turmoil, but outside you might see nothing. I expect even the ‘lower functioning’ of us get this, but their consequent behaviour is probably just seen as ‘challenging’. 

 

Ralph isn’t the first loss I have suffered in my life. The first (that I remember) was my granny who died when she was 65 (or thereabouts, my number recall is terrible). I was 12 years old at the time and I felt everything and nothing all at the same time (I have been told this is feeling ‘numb’). My inability to express my feelings (I had less speech age 12 as well) meant that they came out as ‘behaviours’ including lashing out, screaming, harming myself, violent behaviour and destructive behaviour. No one seemed to make the link between my Granny’s sudden (well it seemed sudden to me) death and my ‘challenging behaviour’. Back then my autism diagnosis was still non-existent so doctors said I was depressed or attention seeking (depending on who we saw). Some blamed my Mum for my behaviour saying ‘you’re not disciplining her properly’ and other very unhelpful comments. It didn’t matter how ill I got, no one put two and two together and saw my behaviour as communication attempts. I couldn’t simply sit down and say ‘Mum, I am feeling very sad that Granny died’ so it came out in the only way I could express it, frustrated rages. 

 

I suffered like this for many years. My ‘odd’ behaviour attracted bullies which then caused my ‘challenging behaviour’ to become more challenging. Later in my teens, I lost one of my first pet rabbits, Jasmine who had a rare genetic problem, then Pippin who also had a genetic problem (don’t buy from pet shops!), then both of my goldfish; Chub-chub and Caramel died (aged 10 and 9 respectively so I was impressed rather than massively upset). Later one of my rabbits, Kenny got out after only having him for a few weeks and got caught by a fox, then Jenifer, my first bunny (along with Jasmine) had to be put to sleep aged 8 1/2 when she caught pneumonia. Every time, my ‘behaviours’ got worse but no one, not even the apparently ‘expert’ autism residential home I was in at the time of the last two deaths, seemed to link it together. 

 

What I want people to know is, no matter how insular we may seem, people on the spectrum CAN feel grief. Whether this applies to all, is up for debate (but then some ‘normal’ people don’t feel grief!) but you should never assume that a person who is ‘on another planet’ is not understanding the current situation. They may be feeling grief, just like you, but cannot express it in an ‘appropriate way’. 

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