I often wonder, what caused my autism? Autism is said to be, first and foremost, a genetic condition. However genes can be triggered by outside events (called epigenetics), and it is possible that this is what happened in my case. Other than myself, there are no other diagnosed cases in my immediate family. In the extended family, my mum’s cousin has a son with Asperger’s syndrome, but this may or may not be a factor. It is also interesting to note that my mum’s sister’s son, like myself, has synaesthesia, which is said to be related to autism. However, my late Grandmother (my dad’s mum) had a personality disturbance that was probably exacerbated by the Holocaust. She escaped Nazi Germany at the age of 16 on the Kinder-fleet, and both her parents (who were Jews) lost their lives to the Nazis. Her siblings reacted with the expected depression, but they kept close to their families and they did not behave in the ‘odd’ way that my Grandmother did. My Granny was different. She was obsessed with herself to a pathological extent, and had to be the center of attention all the time. She adorned her house with endless photos of herself, dominated conversations with a manic intensity, and loved acting and role-play. As a young woman she went to endless theatrical re-enactments and dressed up in elaborate costumes. As a child she opined that she had no friends, was lonely, retreated into a fantasy world and wanted to be a princess. As a grown woman she spent hours over her appearance, cooking, and being the perfect housewife. For example she would spend hours preparing a roast dinner which would not be served until midnight! This perfectionism and high standards triggered severe bouts of depression where she would be bed-ridden for weeks. Shortly after she turned 40 she went shop-lifting and stole some petty items, after which she took to her bed. A psychiatrist intervened and prevented her from being charged because of her mental state. Shortly after this episode my Grandmother had a face-lift- she felt she was losing her looks and beauty.
My Grandmother was full of bitterness and anger. Consequently she cut off her family and disinherited my Uncle, all over an incredibly trivial matter, where she felt she was being bossed around ”in my own kitchen” (this was of course not the case, but my Grandmother often felt persecuted and bullied) My Grandmother had to be in control. She hated being upstaged, even if this was only a false perception. In her letters she writes about fears of abandonment, isolation, fears that she is no longer beautiful, and how exhausting it is for her to maintain appearances. She felt as though she was acting all the time, and this is why she eventually cut herself from everyone because she longer had the energy to keep on acting. I can certainly relate to this, and on a deep level I felt some sort of connection with my Granny. Shortly after I got diagnosed my Granny asked my dad if she herself might have Asperger’s, and maybe she was right. I am very different in some respects to my Granny. My Granny had a vindictive streak within her, she would tell fancy stories that merged fact and fiction, and she could be extremely charismatic. I lack the ability to act in such a manipulative way, and my Granny could also be bitterly sarcastic and deceptive. Because of these qualities my mum did not think my Granny was autistic, but instead had a personality disorder and/or manic depression (she was certainly extremely manic and impulsive – binge eating, compulsive spending, stealing other people’s belongings, and sudden bursts of spiteful anger; silent treatment was the technique she used the most). However, she had a profound inability to truly relate to other people, and lacked empathy at times. She suffered a great deal, and I think she could not help the way she behaved.
My Granny doted on me, would constantly say she loved me, and showered me with gifts and sweets whenever I visited her house. She never wanted Grandchildren or kids (they were unplanned), but I like to think that her love for me was genuine. I will always remember her tight hugs, the lovely salads and cakes she made, and her play-room which was full of toys. I did have a bond with my Granny because she was so effusive with her love, in a way that is quite rare. There were times when she got cross and impatient, but I remember her nice side, even this was only an ‘act’. Sadly my parents remember her vindictive side, and my mum in particular was deeply hurt by my Granny. But I feel sorry for my Granny, and I can relate to her child-like personality and inability to truly understand the world. I don’t know for certain whether she was autistic, but I strongly suspect she was somewhere on the autistic scale.
The second suspected cause is the stress my mum experienced when she was pregnant (her mum had terminal cancer, the same disease that my mum sadly died from very recently). I stopped growing at 5 months, and my mum had to take bed rest. I eventually began to grow again but although I was born on time, I only weighed 5 pounds at birth. I am aware that intra-uterine growth restriction (the scientific term) can negatively affect development. Perhaps genes plus stress triggered my autism. Interestingly my younger brother is not autistic. My mum was relaxed when she carried my brother, and he has always been incredibly calm, and takes everything in his stride. He is spontaneous and flexible, but he did have speech problems as a child and was very shy at school. This suggests to me that the genes needed a trigger, and unfortunately this is what happened to me.