Have A Sister With Asperger’s
This is a piece I wrote for my University newspaper and it’s an issue close to my heart.
What have Einstein, Bill Gates and Michael Jackson got in common? Apart from being super-talented, your first thought might be that they all seem slightly strange, bizarre even.
What if I told you that they are all thought to be Aspergic? It might help explain a few things such as Jackson’s inappropriate behavior towards children and Gates’ single-minded focus on technical minutiae. Asperger’s syndrome is one of the disorders on the autistic spectrum. It is a milder and higher functioning form of the condition that afflicted Raymond Babbitt, the character played by Dustin Hoffman in Rain Man. It is still largely unheard of because the ‘symptoms’ so to speak, are so easily likened to mere eccentricities. However as a psychological condition it is, for most sufferers, a daily struggle.
On Friday 18th November, a boy featured on Children In Need expressing his gratitude for a charity that had helped him develop skills to deal with his Asperger’s in day-to-day life. I’m sure most people were baffled as to what was wrong with him at first glance. It’s an invisible disability. Something that is strange and a little scary because you cannot define it by a wheelchair, a hearing aid or an obvious physical difference. It’s all in the mind.
Lili Wilson is beautiful, intelligent and witty. Meet her for half an hour and you will be charmed by a young girl who appears twenty-five, not 16. Any longer than that and she shuts down, retreating into the parallel but safe world of television. Her intellect is that of a woman beyond her years but the emotional part of her brain is on par with a twelve year old. This chasm between wisdom and maturity is baffling and renders her paralysed with rage a great deal of the time. It just doesn’t make sense that someone so clever is unable tell her left from right or make sense of the most basic social cues.
For years her family thought she was just a difficult, bratty madam. They thought her clumsiness was exaggerated, her hatred of going into a shopping center full of people was a symptom of being a drama queen and that her difficulty in getting a nice group of friends at school was simply bad luck. They had no idea that it was all part and parcel of Asperger’s and that’s because it’s so difficult to diagnose in girls.
Aspergic or not, girls will put on a disguise in order to seem normal. Any differences they feel they have to others are covered up, and most girls face bullying and have major mood swings, particularly once they hit puberty. So with that in mind, how do you distinguish between your average teenage girl and one with Asperger’s? With great difficulty, is how. Lili was ferried between numerous so-called specialists, councillors and psychiatrists for two years before she underwent a psychometric test, which determines how the mind works. This revealed Asperger’s.
It’s relative anonymity – it was only made a standard diagnosis in 1992 – and the fact that many cases are so mild, make it extremely hard to pick up on. When the Wilson’s finally did receive a diagnosis, their lives were turned upside down. It gave them an answer, at least, for behavior they just couldn’t understand but it also thrust upon Lili a label she didn’t want to have.
One father of an autistic child, Jonathan Shestack, describes what happened to his son, Dov, as “watching our sweet, beautiful boy disappear in front of our eyes.” At two, Dov’s first words – Mom, Dad, flower, park – abruptly retreated into silence. Over the next six months, Dov ceased to recognize his own name and the faces of his parents. At age nine, after the most effective interventions available, Dov can speak 20 words.
Of course, Lili’s Asperger’s is not as severe as this form of Autism and she does have the ability to live a very successful life if she finds her niche. What is similar is the change in Lili from pre-puberty to today, because of being in an environment – school – where everyone feels insecure, and anyone that appears different is voted off the island.
Robyn Steward, a woman with Asperger’s who mentors others with the condition and offers support and advice to families, told me to “imagine driving round a tricky car park with both of your wing mirrors cracked”. Such an image allows for the tiniest appreciation of what it’s like for someone with Asperger’s. This handicap in picking up social signals whilst trying to navigate the trials and tribulations of school life meant Lili was constantly bullied.
She was targeted because of her weight, but also for her strange tastes, which had a whole lot to do with sharks and not a lot to do with make up or boys. Asperger’s doesn’t allow for the recognition of many subtle social cues like sarcasm or seething anger, and this meant that vulnerable Lili would get lured in by false pretenses and vicious pranks, not ever once realizing people’s true intentions.
The problem was that this wasn’t what bullying would be like for you or I. It takes on a whole new and sinister meaning when you are desperately trying to make sense of the emotions and actions of others, which to you are completely alien. That is what it is like living with Asperger’s. Whereas most people would act instinctively to certain types of situations or behaviours, someone with Asperger’s has to act cognitively, which means that every piece of information received has to be processed and thought through before acting upon.
Susan, from York University, says of high school “I still get nightmares about those five years sometimes… I had no real friends to speak of and was permanently just beyond my limits. I’m not sure that the school even noticed that anything was seriously wrong until I had a massive screaming meltdown 2/3 of the way through Year Ten”.
As somebody who has experienced Asperger’s first hand, Lili’s sister Claire explained that the hardest part of the condition is not all the odd quirks such as hypersensitivity – Lili cannot for the life of her wear any woollen clothing and can hear a clock ticking in the next room – but it’s the apparent lack of caring. “For me, I get nothing back in terms of love and affection,” says Claire.
Emma, 20 from Manchester University reiterated this point. “I suck royally at expressing empathy. You tell me something awful, and I feel for you. I feel really intensely, as a matter of fact. I want to hug you and make you feel better. But.. I can’t. It’s not inhibition, it’s not psychological damage. I just can’t.”
What’s remarkable, though, is that Emma even made it to university because most Aspergics won’t. Routine is vital, and allows those with the condition to flourish. The sporadic and barely-there contact hours of many university degrees and the focus on personal time-management are a nightmare for ‘Aspies’. If one in 100 people have the condition, as recent research has shown, then there are around 150 students at York University who may or may not know they have it.
Those anonymous people should be applauded and supported. Every student at this university should be aware of Asperger’s, because that housemate that you live with, that you think is just plain weird, may be struggling to cope.
Many mimic behaviour they see on television, or interactions other people make, and try to use this to fit in. Susan explained to me that she “had to learn social skills out of books and by painful trial and error. My ability in that area is rather limited and social occasions such as the Christmas Formal would test them to, or even possibly beyond, my limit. And if I get pushed far enough beyond my limit, ‘Meltdown’ does not do it justice.”
Try to bear this in mind, and appreciate that people with Asperger’s have a far harder time of it than those without it. They may make Einstein look average, but socially, life is harder than any quantum physics equation.
The best thing about meeting Susan was that she described her Asperger’s as the ‘keystone of my personality’. “Asperger’s Syndrome influences every aspect of my psychological life, and if it was outright cured, I would not be me – you’d just have a more-or-less empty shell. That’s why the ‘cure autism/Asperger’s’ folk really get up my nose – ameliorate the more seriously debilitating aspects of the more severe expressions of the condition, I can understand. Outright cure? No thanks. We ‘spectrum folk’ cannot change – and I for one do not want to.”
If you are aware of conditions such as Asperger’s then you can deal with most types of people and help to better our society by keeping an open mind. Mental health doesn’t conform. We can’t neatly tie it up but the best we can do is to treat everybody equally and not take people at face value. As a fantastic article on the Wired website stated: “For all we know, the first tools on earth might have been developed by a loner sitting at the back of the cave, chipping at thousands of rocks to find the one that made the sharpest spear, while the neurotypicals (Aspergic term for the rest of us) chattered away in the firelight”
If you want to learn more about Asperger’s, or make a donation, please visit http://www.aspergerfoundation.org.uk