Autism Awareness Month. Here we are again. How much has my own sphere changed since? Here are a recollection, and my personal views on the subject.
I remember attending the event on 2 April last year (2011) in my home country. It was held at a school supposed to have been specially built for autistic children. The facilities were impressive, well to any person without hypersensitivity, that is, but my own senses immediately felt the triggers as soon as I entered. The auditorium featured blinding fluorescent lights flickering almost violently. The sound system was set to full blast, with huge speakers placed on tripods on the floor, just next to the audience. As I entered, I felt as if my senses were under siege. The lights made me dizzy, the smells from the bodies around made me feel nauseous (obviously most people hadn’t showered, it was early in the morning and the tropical heat and humidity made it all the worse), and the buzz from the audience (parents and relatives of autistic children) all talking at once, blending with the sound system which was pounding out horrible lowbrow music, created a terrifying soundscape that made my head pound with pain. Autism Awareness, indeed! I wonder why nobody bothered to design this school with consideration for the sensory needs of the children? Some of them, I am sure, would have hypersensitivity, rather than hyposensitivity.
Then the address. I was saddened and somewhat disappointed, but strangely not very surprised. Nobody talked about the children’s intimate, personal, emotional needs. Nobody spoke about sensory issues. It was all about making the children ‘normal’, how to mainstream them into the educational system, what facilities were available to put them into in the future so they do not become a nuisance or burden to society at large etc. The ‘musical’ performances put up to entertain the VIPs and parents seemed more to me about turning them into song and dance monkeys, just like they do in mainstream schools. However, in the latter case, perhaps the kids really do enjoy the song and dance routines, and most (autistic or not) have little idea about the quality of these routines created by adults with very bad taste or just poor qualifications. I am sure some of the autistic children put up on stage on display (yes that was how I felt about it) did enjoy the routine to a certain extent, but it didn’t seem universal to me. I saw confused faces, I saw hesitation, I saw fear, and I saw coercion. Is this what music, dance, performance is all about? Is this how the arts are employed here? Creating poor quality vaudeville routines? My head began to pound even more. My heart began to race too, with anger or from sensory overload, I couldn’t tell the difference anymore.
I sat in a corner at the back, I couldn’t bear being near the smelly, noisy crowd. I was told I couldn’t sit there as it was reserved for the children performing. I said, sorry I am not moving, I cannot stand the smell of the crowd. The person (possibly a teacher) looked shocked and left me alone, probably never encountered anyone so frank and blunt before, and definitely did not seem sympathetic. She scuttled away without hearing the end of my sentence, that indicated to me that she let me stay put only because she was intimidated by me. Nothing more, and nothing less. The children scheduled to perform streamed in. I observed the interactions. Many times, I witnessed the teachers holding up a child’s face, staring the child in the eye while the child tried to avoid eye contact, and putting a finger up very close to his/her face, and threateningly say in a low hissing voice, “Stop this bad behavior right now!” For god’s sake, the child, from what I could see, was merely fidgeting because he/she was plain bored. Any child would in a situation like that, but with the sensory onslaught that was going on (we were just next to the horribly loud speakers), how could the teachers expect a hypersensitive and/or autistic child to stay quiet? Not even a neurotypical child could do that!
At the end of the grueling, sensory punishing event, there was a question and answer forum. Parents asked about schooling after grade school. Sorry, no facilities after age 12. Parents asked about themselves, mostly, how the government could help them to make life easier for them, because they had abnormal children. That was the general vibe I was getting. Not a single parent stood up to ask about parent-training on how to better understand their children, the condition and their needs! Shocking, but true. Then I stood up to ask a question. I identified myself as an adult with autism, Asperger’s Syndrome, about to embark on a Ph.D programme. I joked, “We do grow up, you know!” I heard one person begin to applaud, but that was snuffed out by an uncomfortable silence from the hundreds of others. I saw shocked faces. I thought to myself, “My dears, so you never thought your children would grow up?” I asked the panel, “Do you have any representation from adult autistic people when you plan and devise your policies for special autism education and facilities?” The panel returned a look of utter incomprehension. I suppose they had never thought that adult autistics could be capable of giving their views on lofty things like policies, education and facilities? One of the panel members tried to answer, but her answer showed utter lack of understanding of my simple question. “Do you mean to ask if we have facilities to help autistic adults? I am sorry, but not at this moment, we do not. We are working on it.”
Duh? I had to repeat myself once more. No, my question is about consulting adult autistics about the policies that affect them directly. That did it. Or rather, undid it. Shockwaves rippled through the room, I could literally feel the waves bouncing on my skin, and a low buzzing murmur permeated the auditorium. Nobody had even heard about such a thing, apparently. They then asked me to write my email address and phone number on a grubby piece of paper – the person dispatched to approach me said someone in the panel (consisting of key people in Education and Disability Services) wanted to contact me. As I was leaving, a representative of the autism parents’ association came running out to greet me. He too asked me for my contact details, and he handed me his card. He said the parents’ association would like me to address them some time. I replied that I would be most happy to do so. I dutifully sent him an email when I arrived home, to establish contact. All that happened a year ago. And nothing came of it.
So, here we are again, one year later, Autism Awareness Month 2012. How aware do we really want to be? Are autistic people the only people who truly want to be aware of this condition? After all, we have vested interest, don’t we? Are the only voices speaking out those with autism, the so-called higher functioning ones who are able to verbalize and tell the rest of the world about our existence? Of course, we have the parents who do truly love their autistic children in an encompassing way, those who struggle with the same daily challenges but do not condemn the children for being ‘freaks’ and how horrible the children have made their lives. Just as there exist parents of children with other kinds of disabilities who love their children unconditionally. However, sadly, these are the minority, or rather, the far less vocal ones. The collective big noise in the media everywhere is created by the parents who condemn autism as if it were some undeserved plague that descended upon them, “All I wanted was a normal child!”, “Autism has ruined my life!” etc. These one who never give a thought to the child / teenager / adult with autism, the intimate personal struggles they face, their feelings, their emotional and mental states. No, these parents, like the folks at Autism Speaks, talk about autism as the Big Bad Bogeyman. (Just watching those videos by Autism Speaks on youtube can make me physically sick!)
To these latter group of ranting, whining, complaining parents, my message is, this:
Nobody forced you into having a child. Nobody guaranteed that your child would be perfectly ‘normal’, healthy and commonplace. You made a choice. You made a conscious gamble. You took that risk, you and your partner. However, your child had no choice in the matter. Who is the one who should be feeling trapped, angry and hapless? If you went into a casino and gambled your fortune away, do you then have the right to whinge and wave your fists at the casino operators that you didn’t win anything but rather instead lost your entire life savings? Nope. If you did, you’d be shown the consequences. So why are you having it out on your child? Your child had no choice in the matter. Your child is listening. Your child hears and knows your anger, resentment and utter insensitivity. Your child is suffering even more from your attitude than from the autism itself.
I recently gave up contact with one such parent. Never a good word about her Aspie teenager. I know the boy, I taught him in preschool, and I have maintained contact with him. I just don’t want to speak to the parents anymore. I gave them a book about Asperger’s Syndrome (by Tony Attwood), my own personal hard cover copy. I told them, please stop going on and on about how horrible your life has been because of your child, and then how much you love your child in the same breath. if you really loved your child, why is it you tell me, after over a decade of your very luridly described struggle with his disabilities, you still have not read one single book about Asperger’s Syndrome? According to the boy, his parents never bothered to read it, nor did they pass it on to him to read. I told the boy that he should find a way to carve out his own future from now on. He seems to be a sensible young man. I maintain a connection with him. I told him I am not a psychologist or autism expert, I am just an older friend who understands because I have walked the Autism Road myself. I have hope for him. None for his parents.
Wake up, world! Will they ever wake up to their own utter lack of empathy? I hope they will, someday, but I know we are addressing the minority here, the few who want to wake up, who want to know, who want to join hands and help their own children, and help themselves to appreciate neurodiversity and to live life to the fullest themselves, by learning how to address, accept and embrace beauty in anomaly.
Happy Autism Month, folks.