Life on the Spectrum
- July 10, 2017
My friend Elaine is one of the best Mums I know. I don’t just say this because she’s my friend, I say this because it’s true. Her life as a Mother has brought her satisfaction and joy beyond compare, but for her, every day can be a struggle to reach the peak of that satisfaction.
She is Mum to 2 beautiful children now aged 20 and 16, and she’ll readily admit that she has brought them up completely differently. She’ll happily tell you that her youngest is granted far more leeway in a lot of situations than his older sibling was; that she’ll turn the other cheek and walk away if he’s rude to her, rather than chastise him; and she is painfully aware of the fact that some people think he’s arrogant. He’s not arrogant. He has Asperger’s Syndrome.
Elaine and her husband Mike realised quite early that there was something a little different about him. At about a year old when she returned to work after maternity leave, he struggled with day care. It had to be one specific Keyworker he was literally handed over to, otherwise meltdown ensued, and on the days that it did, Elaine would have to just turn her back and leave. There would be no pacifying him, no bargaining; she just had to walk, hearing his heart-breaking screams as she did.
As he grew, she started noticing some of his little foibles. He would constantly fiddle with his socks; when he ran he would continually look down at his legs rather than his destination; he couldn’t cope with certain sounds and noises; people worried him and he wasn’t interested in socialising with other children. Play dates were a waste of time, as he just wouldn’t join in; he’d just sit glued to Elaine’s lap for the duration. Some people would try to compare him to his older sister, making well-meaning but nonetheless upsetting statements like “Ooh, he’s not outgoing like his sister, is he?!” Elaine was acutely conscious that the answer to this statement was a resounding “no!” as well as the fact that people just didn’t warm to him like they did his older sibling.
When he was 5 and started school, Elaine’s concerns over his development intensified. He was signed up to Morning Club and each morning when she dropped him off, although he would willingly go in, he’d make a beeline for the nearest table, dart straight underneath it and sit growling at the wall. The staff assured Elaine he was fine, and that her worries were unfounded as they had no concerns whatsoever about him. Some of the more receptive staff who understood him (as well as Elaine’s concerns) a bit better would be more helpful; one teacher in particular used to take him into the classroom early, and he would sharpen pencils for her – a routine that he loved. But on the whole his school refused to acknowledge that he may have problems, due largely to the fact that academically, he was performing beyond average.
But by now mornings were becoming horrific. He’d developed his own routines and rituals, often lining the cutlery up in the kitchen drawer, trying on countless pairs of socks until he found the right ones – ones that were comfortable. He’d constantly complain that his clothes didn’t feel right, and as he struggled to sleep at bed time he was continually cranky first thing. Along with the inability to express his emotions he would take his frustrations out on Elaine, sometimes physically.
Still his school refused to acknowledge any problem. Even when they rang Elaine telling her that he’d run away from school, by jumping the fence! In reality, they just thought him a problem child. Elaine began documenting his behaviour, and armed with her evidence she took him along to her GP. He was immediately referred to a paediatrician who specialised in Autism and Asperger’s Syndrome, and after a couple of visits he was finally diagnosed.
Although he has always struggled to form relationships, he’d always had a great friendship with my youngest daughter Emma. Elaine would often ‘borrow’ her if they had a social engagement that she knew he would find difficult. On one occasion they went to a wedding, where he and Emma spent most of the evening under a table. She was such a loyal companion! He was 7 when my son was born, and he would enthusiastically come and stay for weekends to ‘babysit’ for me. I remember Elaine telling me at the time that my son was the only human on earth that he would show any affection for.
Thankfully as he’s gotten older, he’s formed other friendships and is popular at school. He has a lovely girlfriend who is excellent at understanding what he’s all about. She’ll happily go to parties without him, knowing that it’s just not his thing, as he still struggles enormously in social situations; he desperately wants to join in and be included, he just doesn’t know how. His social anxiety is such that he won’t even answer the door because he doesn’t know who it might be, and he won’t answer the phone for the same reason.
As he’s grown up his violent meltdowns have been replaced with verbal ones; Elaine bears the brunt of most of them, simply because she is the person closest to him. He uses so much energy trying to be what others perceive as normal, that when things don’t go the way he envisages, a meltdown will ultimately follow. The anger he directs at my friend is his way of expressing his frustration with himself, and she deals with every single outburst with grace and humility, more often than not restoring calm with the use of kind and gentle responses.
Like other people on the autistic spectrum, he is hugely talented. He has an artistic and creative streak, and has already decided on graphic design as a career path which he will no doubt completely focus on, making his dream a reality. There will be no room for manoeuvre and no margin for error as there are no grey areas with him. He sees everything in black and white (as is made evident by his fiercely loyal nature) and thankfully has a moral compass any parent would be proud of: he can’t understand why anybody would go out drinking with the sole purpose of getting rat arsed (his body is a temple); he has a strong and driven work ethic; and any kind of betrayal is abhorrent to him – people who cheat are not worthy of his attention. He also has a completely brilliant, albeit dry sense of humour and possesses wit so razor sharp he’ll cut you with it, something which is a constant source of entertainment to Elaine’s whole family. She tells me that the two of them regularly laugh until they cry!
At 16, he’s more and more aware of his Asperger’s status and he’ll now ask his parents to make other people aware of it if he’s struggling in any way. So to anybody who comes into contact with him, (or somebody like him) and asks what’s wrong with him, my answer would be this: there’s absolutely nothing ‘wrong’ with him. How can there be when there’s so much that’s right?
My name is Jane. Awe struck Friend and ‘Auntie’.