...Is that they paint a very condensed, incomplete and judgmental picture in a person's mind. They automatically turn a description of a genuine issue into something that is easily tick-boxed and canned and think they know everything about it because they've heard the term before. I never knew much about Aspergers, despite one of my best friends son's being diagnosed years ago, I didn't take the time to learn much more than what the front pages of a few websites say, which is mostly the same bulleted list of traits. And I didn't understand how she struggled with him. There are times when I even said to her 'My kid does that, it has nothing to do with ASC, it's just the age - she's exactly the same' - a few years later, my palm hit my face in spectacular 'well, aren't you a dumb-ass' style.
It was October 2011, and the kid was just turned 7 when I started reading about Aspergers, it was because I had applied to go back to Uni, and was looking at Auditory Processing Disorder on my supervisors advice. I vaguely paid attention to the information thinking of my friends little boy and starting to understand a little better why he was the way he was. Then I read an excerpt from a mother about her son: "I couldn't understand why it was that my son could be so intelligent and talk non-stop about the universe, but can't stop climbing over furniture in public places". Not even two weeks before having read that, I had been on the beach with the Kid and family, in a pub having lunch where the Kid had been spiralling on about space, the universe and planets, whilst climbing over the banisters in the pub, and my brother snapped almost word for word the same excerpt. It hit me that for the first time ever, I had read something in a text book on child development and my daughter actually fitted.
I thought back to having studied Early Childhood Studies and Linguistics when the Kid was between three and five years old - the ideal age for observations, sample drawings, analysing their early writing, social development, play, learning...and how much it p*ssed me off that I couldn't use her for my studies because she just didn't *do* what she was expected to do and that age and what was expected of me in my essays backed by the literature - I just couldn't blag it. And it equally annoyed my friends as they soon realised that they couldn't use my kid easily for that. She just never 'fitted' those boxes, she just didn't *do* those 'normal' things that I was reading and learning about. She didn't actively seek out friendships, or role-play, or say 'let's play...' as is apparently very typical for little girls. She didn't start forming random pencil marks onto paper and saying they were a word at 3-4 years old. She was writing her name and simple words. She didn't get the baby dolls out and pretend to feed them, or carry them or play mummies and daddies. She was happy sitting in the corner reading to herself quietly, or working out how things worked, or drawing. Her nursery even once asked me if I took her to Art classes because her drawings were exceptional for her age. My response as a full-time student, part-time working and very single mother was 'are you freakin' kidding me? Where have I got time for that?!'. But I never thought anything of it. The kid was simply the way she was, she was perfectly happy being the way she was, she hung out with my friends and I and conversed with us, and I wasn't worried about her. She still had some raging toddler tantrums, I figured that was just childhood - I'd never been a parent before, I didn't know any different, kids are difficult, I figured she was just difficult at times like any other kid.
But those 'tantrums' are what I now know to be meltdowns, that she never 'grew out of' as I expected her to. And when she hit 7 - she went bang. Totally. You see, the start of year 2, and her teacher was the SenCo. I thought that it was brilliant because she would be just the right person to talk to. And I asked if the kid could be seen by the Educational Psychologist, or School Nurse or whoever, because I suspect she has Aspergers. Her teacher's response was that she saw no reason to have to do so, there were no signs of Asperger's in the kid, that there are usually severe behavioural problems associated with it. I pointed out that the kid had a totally different personality at home to the introverted, incredibly shy little ghost of a girl she saw at school. But because the 'kids with those issues are disruptive to class' and the kid just hardly noticeable at all. The teacher ended our conversation with 'I've taught children with Aspergers' before so I would know'. Out of nowhere, I replied 'how many of them were girls?'. I hadn't even thought until that point that they would be so different to identify.
I went home and that night Googled Asperger's in Girls, and had another look at the list of Gifted and Talented traits, both socially and academically. Two things hit me - how similar the two lists of traits were, and how little information there was about girls with Asperger's compared to almost everything else which *exclusively* spoke of male traits. Although there was usually a mention as to the 1:4 female: male ratio and a question mark over why 'boys are more likely than girls to have autism' - it occurred to me that the girls might just be being missed - slipping through the radar because they were so quiet and shy, and so totally not disruptive in class - a teacher spends more energy on the kids that command the attention. The kid just coasted along quietly in the back. There was a huge amount of information on ASC, Asperger's, some of it scholarly articles, some total crap. I couldn't take it all in to understand how to 'stop the kid being the way she is and go back to normal'. Somewhere around then, I forgot about studying for Uni, and my reading lost it's academic priority - I needed to learn how to parent this kid.
But over the next term, her moods at home deteriorated massively, she became quite incredibly unmanageable. We spent day after day at loggerheads, usually shouting, crying, arguing over something ridiculous, going around in circles. She was amazingly rude, arrogant, argumentative, stubborn, over reacted to everything, was constantly on edge and just impossible to talk to. I dreaded every day picking her up from school and the futile effort of trying not to let it end in arguments. Her academic levels were suddenly decidedly average and she just stopped bothering to produce what she was capable of. Again, I went to speak to her teacher and asked for an assessment, for something to help me, because I couldn't cope with her at home, and I could see the direct impact school was having on her. She reluctantly agreed, although made it clear that the kid was in no way a priority and that she thought the kid was nothing more than a bit bright, but there were plenty of others with higher levels than her. I didn't give a toss. All I knew was that my daughter's smile was gone, my funny, witty, clever little weirdo, and that I had a raging little girl, who was over-emotional and volatile. I was ready to walk, quite frankly. I know I never would, and that like it or not, I'm the constant in her life, no matter what she throws at me, I'm the only one that would stick it. But that's how I felt, day in day out. What I later learnt was that her anxiety levels had hit an all time high, and she was a ticking time bomb constantly. And that the anxiety she held onto for six hours straight at school, she unleashed on me as her rock that could seemingly just take it all.
Well let's just say that the Senco didn't make getting the ball rolling with an assessment easy. She told me meetings were cancelled (when I knew they hadn't been), gave me a false date of the next meeting, so my consent slip wasn't in on time, she, quite frankly, bullied the kid all the way through year two - and the kid suffered emotionally and academically and struggled the whole year through. The headteacher, needless to say, got a long letter at the end of the year, and the teacher's misconduct was reprimanded (she's been very careful around me since). By the end of year two (literally the last two weeks), I was given an appointment to speak to the school nurse, and I finally had a chance to tell someone about the kid, her traits, the weird things she does, her behaviour, the things that concerned me...and the school nurse agreed that a referral to the Pediatrician for an initial 'Social Communication Disorder' was needed. She requested a questionnaire from the kid's teacher which was to be sent to the Pediatrician along withe the school nurses thoughts on how I described the kid. And I thought - 'huzzah! FINALLY someone's taking me seriously'. But the appointment with the Pediatrician wouldn't come for at least two months.
That feeling of finally being listened to was amazing, I didn't feel like I was trying to convince myself, or I was being paranoid, or causing a fuss over nothing. I had bit the bullet, swallowed my single-parent-tiger-hard-as-nails-pride, and admitted I needed help. It took nine months from first raising my concerns to getting a referral for an initial assessment. And I felt a little like I had won a small battle.
What I didn't know was that it was just the start (two years and almost at the top of the waiting list now!) of dealing with professionals in child services who just didn't listen to what I said, who judged the kid on a single meeting with her, who wrote false information in their reports, who just didn't didn't understand the tightly intertwined idiosyncratic qualities that made this kid. And NOT ONE single professional in these services who actually HELPED us when we needed it the most. All she was to them was paperwork. A name and date of birth, who didn't fit the male-orientated label that Asperger's conjured in their minds.
When the kid was in year three, she acquired who can only be described an AMAZING teacher who took on board what I said, doubted me at first, but observed the kid closely, and LEARNT about girls with Aspergers and encouraged me to do the same in order to support the kid as best we could between us. She deserves a post of her own another time. Because really, she has been the saving light in a long list of names with titles who have done their job of ticking boxes and signing letters.
So the trouble with labels? They instantly make people think of a certain few things that identify a person with that label. But it means that people often don't feel a need to know anymore about it - the token few bits of information is enough. But when that in itself is true for professional and presents a barrier to identification, it becomes more dangerous than ignorant. They also annoy the hell out of Aspie's due to their itchy/prickly/sharp nature of phenomenal proportions :P
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