Memoir

Journey to the spare world

I HAVE TO get to Lollipops by 3.30pm and it's not going well. Lollipops is a children's party venue which my support group has hired for the afternoon. We've got it to ourselves from after school until 6pm. There are going to be jumping castles, computers, ball crawls, mazes, merry-go-rounds, all sorts of fun and games for kids up to 12. I want my son Luke to go. But it's raining and I have no car because my husband has taken ours to work his usual long hours in a faraway suburb. The last time my group put on a party, Luke had a ball. That was six months ago.

I'm hooked on finding places and ways to maximise his happiness and mine. Luke is six, in year 2, and has Asperger's syndrome/high-functioning autism (AS/HFA). He goes to a normal public school, where he is good at academic work but needs an aide to help him in the playground, where he can be rigid and obsessional. It's hard for Luke to play and to make friends. He has not scored an invitation to a birthday party since he was four. He does not have what he describes as "a best friend to have a special bond with", though the children at school are very kind and tolerant of his unusual little ways. Lately, Luke has noticed he has "more worries than other children" and that "I don't have a special bond with anyone".

I need a lift to Lollipops, but it's not possible. Social flexibility is difficult; autistic kids don't like to change plans or deviate from routines. So I sit on the phone to an operator from the Transport Info Line. She suggests trains.

I can't get a train to Lollipops. Luke must be one of the few six-year-old boys with AS/HFA in NSW who has no interest in trains. (He has no interest in Lego or Duplo either.) He has had sensory breakdowns on trains. He's not used to trains. I can't teach him how to "do" trains by 3.30pm.

Even if I somehow bundled him on to a train, and ignored him screaming "Why are you trying to kill me? Do you want me to DIE? OK, I'll DIE!" Even if I picked him up from the floor of the carriage, ignored the strangers who stare and those who studiously avert their gaze ‑ and pray I don't get the old lady who puts in her 10 cents worth about "behaving yourself, young man" – Luke wouldn't walk from school to the station and then to Lollipops. Luke doesn't "do" walking either. There is nothing wrong with his legs. There is nothing in the motor-planning part of his brain that prevents it. But, for Luke, the problem is: what is the point of walking? What's in it for him?

 

ONE COULD BE tempted to reason with him. I did for a while. I occasionally still do. There are, after all, so many things Luke understands better than the average six-year-old. Like how narratives and stories are constructed ("Mum, what is the complication in this film?"). How to play the classical guitar and read its complex notation (after eight lessons). How to read anything (since he was three). How to construct 100-piece puzzles, picture-side first, then blank side up (boring; puzzles are for babies). Luke's therapist from the Autism Association says he has savant abilities in music, mathematics and reading. I would add theology and philosophy. Luke is very interested in God, the mystery of the Holy Trinity, Creation, the birth of Jesus and the Resurrection (my husband and I are atheists and there is no Bible in the house).

When he was diagnosed at three with autism spectrum disorder (ASD), Luke did not speak much. He certainly never asked questions. But after 18 months of speech and language therapy and a teaching method called applied behavioural analysis (ABA), Luke's language "came in" relatively quickly for a child with major difficulties in understanding what is said to him. Now, three years later, his questions reflect a mind whirling with hypotheses. I am under constant interrogation about things both prosaic and bizarre. Lately, Luke has been on about existence, death, the universe and (dread, shiver) Infinity. The notion of infinity has obsessed him since he encountered it in mathematics. Infinity worries Luke, as does the "spare world", and any place, state or thing without borders, uncontained, lawless and spontaneous. He worried about Infinity for ages until he saw Toy Story, where Buzz Lightyear seemed to offer Luke some hope.

"What lies after Infinity?" he asked the other night.

I was trying to get his naked butt into pyjamas, a task that used to take up to 90 minutes in the days before I used a picture exchange communications system (PECS) – a series of pictures on cards – to form a timetable on the wall in the lounge room. Until he was four or five Luke had no concept of time; he had no idea of the pattern of our days or what would happen next. I remember tantrums over not being able to play in the park at 11pm or not being allowed ice-cream and chocolate sauce for breakfast.

What lies after infinity are memories of those days, just after diagnosis and before intervention, when Luke stayed awake doing puzzles and listening to Mozart violin concertos on CD – or having tantrums – until midnight, 1am, 2am. I used to go to the shower and cry. Sometimes I'd think about taking Luke away with me and jumping off a cliff, just to give my husband and our other kids a chance to live the ordinary life we had before autism. I'm a bit ashamed of that period now. My only excuse is that, having raised two easy typical children before Luke (and having made heavy weather of it), I was prone to being melodramatic and sorry for myself. On internet chat forums, I read of people whose autistic children ate light bulbs and took apart tap fittings; who slept four hours a night; who escaped from locked gates into streets, rivers and bushland; who ate food only of a particular colour and wore nappies into adolescence.

Luke has never lived in that sector of the autistic universe. However, for a boy who had to be taught the difference between the things that are appropriate for doing at night and those that belong to the day, his bedtime concerns about the outer limits of infinity struck me as a pain in the bum.

"No, Luke," I sighed. "I don't know what lies after Infinity."

He paused. As usual, he wasn't going to tell me until I asked properly. "So," I said wearily, whipping on his PJs top while I had the chance. "What lies after Infinity?"

"The Beyond, of course!" he shouted in his overly-loud voice. He looked at me triumphantly, then climbed up the stairs and into bed.

 

TO INFINITY AND beyond, but not to lollipops. "We're going somewhere," I would say. But "somewhere" is nowhere to Luke. "Where is 'where'? What is 'where'? How can you have 'some' of 'where'? Everyone talks about 'where', what is a where, there is no such thing as a where." Especially when, after a while, he discovered that "where" and "somewhere" keep changing – shopping centre, kindy, school, the milk bar – but usually walking – somewhere – is just code for being where you don't recognise anything. To go to somewhere you have not been before: why would you do that? "Walking somewhere" was code for a lot of spare time with stuff rushing at you, noise, creatures with legs, "people being busy".

I need to get a bus. Luke has learned to "do buses" and he can manage maybe four minutes of what I call "unknown places walking" to places we have not learned.

Yet the transport information operator keeps on and on about trains. She can't think outside the grid that's coming up on her computer. She's not listening either. She says to me, over and over, "This is what the computer comes up with when I put in the information you have given me." Is she autistic or is she a neurotypical who has got the global picture but is choosing to play games with me? Neurotypicals always have a hidden agenda, and being neurotypical myself, I know what she is doing: staying out of trouble because today the whole Sydney transport system is having a seizure.

But she's got a job that she's not doing properly. I'm not in paid employment, just doing my job. Like many women my age (late 40s), I'm pressed uncomfortably between the needs of elderly parents and the problems of my children (Luke's siblings are teenagers). My mother is in a wheelchair and my father has had a stroke, so I am running between the geriatric neurologists and child developmental psychologists, going spare. I am university educated, but my skills are now required for my son, though I hope one day to formalise what I have learned to make a difference for others like him. If the Government wants to help get me back out there and give up the $90 a fortnight carer's payment that is such a strain on the public purse (bludger) and such an irritation to public forbearance (loser), I've got a detailed plan to train others to do my unpaid job as a special teacher (autism). The past three years I have spent supporting Luke have cost me more than what I used to earn, and the ability to earn it. Luckily I have an employed husband: he works two jobs and on the weekends; but that's not unusual for many Australian families these days.

So I give the transport information operator a bit of a flame. "Here's some different information, lady: autism affects one in 100 people, mostly boys. It's a neuro-biological disorder that affects the way a person communicates; socialises with others; processes information from his senses; and adapts to his environment. It's lifelong and there is no cure. And for some unknown reason, it's increasing all the time. Used to be one or two in 10,000, but now the official logo of the Autism Association of NSW says "One in One Hundred". A bald statement of numbers that means an autistic child is heading your way some time soon – your children's children, your nephews' and nieces' children, the children they teach or the children they share a classroom or a workplace with."

The operator hangs up.

This is my strategy: I will go online, find that elusive bus and walk Luke from school to the bus stop, a four– or five-minute walk. So long as he doesn't "body-drop". Body-dropping (falling to the ground in a heap and passively resisting all efforts to get him up, like a protester at an anti-war demo) can be dangerous. Once Luke body-dropped on an escalator and I spent months and several hundred dollars getting my back fixed (which was annoying as I could have spent it on his language therapy, $80 for a weekly session). After a few spectacular body-drops in public places, I lived my life under house arrest until Luke was four, when a teacher from the Autism Association helped me devise a course in walking for him. Believe it or not, walking is a social activity – the companionship of hand-in-hand, sharing the same direction, the same concepts of coming (the past) and going to (the future) – it is hard for Luke to cope with walking.

The walking program was part of every Friday afternoon for three months. With much screaming, crying and body-dropping, Luke practised walking to the local kindergarten, the school, the park and (shiver) the shopping centre, scene of many a meltdown. But learning to tolerate and walk through these places is not the same as walking, as we know it.

Eventually I give up on public transport and call my niece. She's a lovely girl, 25 with a busy professional and social life. Having lived with us for a year, she knows Luke and his little ways. These days she's often travelling the world on business, but today I'm in luck – she's home.

"Sure," she says cheerfully. "Pick you up soon."

 

LOLLIPOPS IS FULL of squaling kids, tearing around the climbing frames, tumbling down the rubber slides, riding the merry-go-rounds, driving the miniature cars. Huge plates of hot chips dripping with tomato sauce are piled on the children's table. Parents sit at our own tables, sipping lattes and hot chocolates. Slowly we realise that we are free – Lollipops is a locked facility and if any of our little absconders tries to make a break for it, an alarm will ring (which it does, several times). Not all the kids are autistic; there are plenty of neurotypical siblings and you would be hard put, in this jumble of happiness, to distinguish between them.

Luke bounces with glee on the jumping castle. He is a beautiful-looking child (as many autistic children are) with long thick eyelashes dusting big chocolaty eyes and peachy cheeks. The ordinary happiness of raising children goes to my head like alcohol, loosening my usual anxiety and infusing grace into my rigid posture. Some of the other parents are also showing the signs of release, grabbing social connection in big greedy gulps because it might end any minute.

 

WHEN I FIRST exchanged glanes with other parents in "the autism community" I was struck by our similar look. The distant expression and a "run-over" posture, eyes constantly tracking children. An acquaintance once said: "You're as flat as a squashed doona."

It's probably the look that prompted the early psychologists and theorists of the 1940s to call us "refrigerator mothers", mistakenly blaming our children's autism on our remote parenting style. More likely, the emerging autistic traits in our children had sucked the confidence out of us. (Bad parenting does not cause autism; it is a neurological disorder thought to have a genetic basis involving 10 to 15 genes.) It bewilders parents. Trying to interact with babies who turn their eyes away from you; who as toddlers cannot be comforted or soothed out of mysterious tantrums; who stop babbling or never babble; stop following or sharing your gaze; do not develop speech or use parts of speech oddly; and do not play but line up toys in eerie rows. I know I appeared cold: numb with fear and defensive of my child's very soul.

"February 2001: I feel free-floating anxiety, on edge every day, some days more than others. Today, alone, I feel so weary and desperately unsure. The question Martin and I are confronted with is: what is going on with Luke? His language is delayed and what little he has consists of echoing back everything I say regardless of whether it makes sense to do so. ["What do you want, Luke?" "What do you want?" "No what do you want?" "What do you want!" "What do you mean, Luke? What do you want? What is it?" Tantrum ensues.] He doesn't seek the company of other children and he is very intensely focused on a narrow set of interests that I would describe as "Wiggle-mania" ... I had a disastrous "hearing test" at X Clinic, administered by a woman who clearly thought I was up myself for thinking of Luke as a normal and even somewhat clever child: I got the impression she thought my claims of Luke's piano-playing and eerily excellent pitch were delusional middle-class-mother crap. She displayed impatience with us, and the session degenerated into absolute chaos as she tried to force eye contact with Luke by barking out orders: "Luke! Luke look at me! Look at me!" in an imperious upper-class British accent ... Of course, Luke was not interested in the somewhat uncomfortable headphones he had to wear for the hearing test and he used the pegboard as a puzzle. He attempted to communicate with this dim-witted woman by telling her his colours according to his Wiggles code (Murray-red, Anthony-blue, etc). She didn't get it, apart from seeing it as a sign of abnormal behaviour. Well it might be but it's also a cool way to think ... (I didn't dare tell her about the 'Sally' and 'Spot' shoes ...)."

 

DIAGNOSIS CAN BE a complex, drawn-out and confusing process,with professionals often reluctant to commit to the "A" word even as they think it. I found out from the internet that the words a speech pathologist was using to describe Luke's problems – "semantic pragmatic language disorder" – belonged to autism.

Asperger's syndrome is at the high-functioning end of the autism spectrum, described to me by another parent as "the good end of a bad place to be". This glamour end gets the good press, the tales of geniuses with savant skills (Einstein, Bartok, Wittgenstein). No doubt many industries – IT, engineering, music – would be unable to exist without their large populations of undiagnosed, obsessive, high-functioning Aspergerish people. Some say that NASA is the largest sheltered workshop in the Western world for those with Asperger's syndrome. But I'm concerned that this image of high-functioning autism could minimise the serious difficulties my child faces. As a psychologist explained to me: "HFA/Asperger's is not 'mild autism'; it is autism played at a different level." I'm grateful that Luke does not eat light bulbs or spend all day watching taps drip, but I have a child who has no friends because he does not understand social interaction; a child who says "I have too many worries. So I have to die. I am going to do something bad so a policeman will kill me."

Emotionally it can be a relief to find out what is wrong so you can get on with helping your child. At the same time it can be a bomb thrown into your family and marriage. Members of the extended family scatter, unearthing baby books to check their kids' developmental milestones, rushing to defend their genetic honour, while hastily boarding up old family closets and offering homespun wisdom: "Relax, boys will be boys, weird is good, look at your great-uncle, he was weird, never married and never had any friends, but there's nothing wrong with him; Einstein didn't talk till he was five/six/seven/10." (I want a speech pathologist to look into the history of Einstein's language development and its implications now because, while Einstein was probably autistic, not all autistics will be Einstein, and the Einstein myth is delaying intervention, delaying help for ASD children.)

 

LUKE IS IN bed, patiently waiting to fall asleep. His dad or I usually stay with him. Sometimes it can take an hour or more until he's asleep. Luke holds my hand and digs his fingers in hard; he likes deep pressure, fleeting touch is creepy to him, especially kisses. He is a loving child but the sensory feedback he gets from skin puts him off. A lipsticked mouth approaching his cheek is utterly terrifying – I always wipe off any lippie before stealing a kiss. I'm jealous of my husband, who gets a lot of cuddles from Luke, possibly because he can be relied upon to be lipstick free.

Luke was born after a short normal labour. He grew into the perfect baby who ate and slept and rarely cried. Spiritually inclined friends even called him "little Buddha" because of his still, peaceful temperament. He looked beautiful, smiled nicely and met his early developmental milestones. He was robust and healthy. We saw no hint of what was to come in his second year of life; we had no reason to be suspicious of perfection. When the baby health sister asked me if I felt any concern over Luke's "very passive and good temperament" I was astonished. Finally I had a baby who was as undemanding as air – what was to worry about?

Luke is still not asleep but he tries, because he is so very tired. Autistic children often have disordered sleep patterns, though Luke doesn't, apart from finding it hard to drop off. I read once that autistic people have dreams that are as confusing as their waking lives.

One night, when he was nearly five, I caught Luke prising open his eyelids, forcing himself to stay awake. "Stop!" I said. "What the hell are you doing?"

"I don't want my eyes to close," he said.

We had just learned "why/because" in language therapy. "Why?" I asked.

"Because I don't want to go into the spare world."

"What is the spare world?"

"The world like this world, but that is a spare world."

How long had he been lying in the dark, unable to put a name to "sleep", not knowing that other people also go nightly to that world, to dream?

 

TREATMENTS FOR AUTISM range from miracle cures and plodding token gestures to effective and ground-breaking intensive interventions. They are all expensive. Some parents earn the considerable sums of money needed to do applied behavioural analysis (ABA), which is a highly effective, scientifically validated teaching technique that provides real hope for autistic children. It can upwards of $35,000 a year for some ABA programs. The costs of private therapy generally put it beyond the reach of most. Decisions concerning therapy place great strain on families. I know parents who have sold their homes to do ABA. Selling the house you live in is an extreme step, but when you are told that your non-verbal or barely speaking three-year-old has autism spectrum disorder and that the most effective intervention is ABA/language therapy which requires 30 to 40 hours of therapy a week, administered by teams of therapists who come to your home to work with your child, what would you do? If, with the new therapies available today, your child has a good chance, or any chance at all, of learning to speak, of being "recovered", what would you do?

"March 2001: A psychologist, LF, saw Luke at kindy today ... She said the scatter of skills the highs and lows of his intelligences meant that he was not , in her opinion, intellectually disabled as well as autistic. She said he was probably on the average to high intelligence band of the high-functioning end of the spectrum ... She gave me hope that Luke would not deepen. For I had a fear that with this unknown thing, that it was possible to regress, that working with any kind of 'progress' was not to be assumed ... She also told Martin and me that Luke 'clearly loves to learn'. I turned these words, like precious stones, over and over in my head. 'He loves to learn. He loves to learn ...

"LF also made it very clear to us that the next two years were crucial for Luke. Two years ‑ until he's five is the biggest window of opportunity to maximise his language development. It will never come back. What we decide to do now in terms of intervention will have a more profound effect on his future that anything we do later ..."

"April 2001: Most of this month was spent learning about autism, learning the principles of ABA/speech and language from KB in her session once a week and then teaching Luke. The recommended number of minimum hours I keep hearing about is 20, but to get a service provider like -costs a fortune. I read most of Behavioral Intervention In Young Children with Autism [edited by Catherine Maurice et al] and especially the DIY programs they outline. I have photocopied them. I also got Catherine Maurice's Let Me Hear Your Voice she outlines ABA programs at the end of her book. She inspired me to think I can learn this and, with my previous life's skills, I could do it myself. Sure, I don't have the right letters after my name, but I'm a motivated parent which cannot be underestimated in its power. At the very least, I will be better for Luke than nothing, better than leaving him without help in his own world without choices.

"Luckily Luke is my youngest child. Luckily the others are just old enough to fend for themselves for a while. Martin and I had a family meeting and, with the older children, we drew up a roster that amounted to me having 14 hours of one-to-one teaching time for Luke. In addition to the incidental teaching (targeting a skill and practising it in real-life situations all day) and therapy with KB once a week, it's a solid amount of hours. Not the number Lovaas [University of California behavioural neuroscientist O. Ivar Lovaas] recommended in his studies, but it's the most we can come up with without breaking up the whole family ..."

 

OVER THE YEARS I have developed the skills and interest to understand the diagnosis (complex and difficult, but essential) and found ways to train myself in the therapies (the sensible learning strategies such as ABA, Floortime, TEACCH, social stories, PECS, sensory integration, relationship development intervention – I don't do the swimming with dolphins and the weird diets). Applying the knowledge is the hard bit; so much depends on whether your child will accept you as teacher/therapist, whether you have the time in the day, where you child is on the spectrum.

I am good at getting help for my son. My oldest daughter says, "Mum, you can find a pilot study for anything." But one of the ironies I face is that the more I do for Luke, the less help I get from the outside world: education authorities, service providers, the wider community.

 

AS LUKE GOT older, the autistic tantrums have slowly morphed into anxiety attacks. On a bad day, I dream of a little pill that will melt away Luke's fears and obsessions, soften his rigidities and stop his melodramatic "I want to die" statements.

But Luke's psychologist tells me that medication is not recommended for him. In my heart I know it is not the answer for his condition.. If we teach him the concepts, fill out his understanding of the world cognitively, Luke "gets it" and his anxieties lessen. I am being lazy. There are little magic pills for Luke's anxiety attacks. They're called visuals or social stories.

I'm tired. I just want it all to go away. I suspect that I am not so much depressed as burned-out. I am "problem saturated" as they say in the jargon of the social worker.

"January 2004: Feeling the effects now of these years of on-going stress in dealing on a daily basis with rigid behaviours at a high-functioning level ... As Luke's out-of-control behaviours decrease at school, my stress load seems to increase; the two states seem co-dependent. I anticipate where Luke will have a problem, and I remove it from the environment, or I modify it or I teach it away. But because the disorder is pervasive, each level Luke reaches seems to bring a fresh set of problems the game is continually being played at higher and faster levels. And it's not evenly played. There are continual reverses sometimes he gets it, sometimes he doesn't, and this cannot be predicted. There is no real stability ..."

RECENTLY I BANNED Luke from eating an Easter egg in "lines" at school one morning just before the 9am bell. (The egg was kindly given to him by a classmate to celebrate the season.) Luke, who had not picked up the social rule that you don't chomp on chocolate while the principal is talking, had a tantrum (which is why I hover about in the playground each morning). On his way up the narrow Victorian staircase to class, Luke body-dropped as dozens of other eager students pressed behind him on the way to their classrooms. His body-drop flung him against the corner of a steel-tipped table, slashed his forehead, covered his face with blood and resulted in a trip to hospital where his wound was stitched with glue.

With autistic disorders, intervention is not set-and-forget. It doesn't stop at age five or at some point where they suddenly start learning by themselves like typical children. We do not expect a neurotypical child who has been taught year 1 maths to be then considered "mathematically recovered" and able to pick up, alone and without any more formal teaching, an understanding of advanced mathematics. Autism is a complex developmental disorder. You cannot assume that if you have taught an ASD child the basic social skills that they will keep on picking up what is required of them, making friends, learning new games and progressing into the different levels of relationship typical of the ordinarily developing child. Why is there not a social skills curriculum K-12 for ASD children?

 

MOST NIGHTS I am on the internet, lurking on an ABA list, where parents and therapists deal with teaching issues. "Hi, has anyone on this list implemented the socialisation programs in Catherine Maurice's second book? The chapter entitled "Teaching Programs to Increase Peer Interaction" – what has been your experience with it? Has it been effective?"

Tonight, however, Stacey "feeling hopeless in Palo Alto" writes: "For the most part I have yet to meet anyone who has ever felt their child has achieved 'normal' social interaction skills with peers, despite intensive ABA. The 'best outcomes' I have heard about have said that their child is in a mainstream classroom, without an aide, keeping up with or exceeding academically, but their child is still alone at recess every day, and does not have friends (beyond the few children with whom they participated in frequent adult-facilitated play-dates over a long period of time). I'm not sure if that is a 'friend' or a 'trained peer'. This makes me very sad. I would like to shoot higher for my child, but I do not know if that is possible ... Does anyone know?"

12.30am: I look through my list of interventions, the things we do every day with Luke so that he will not fall behind, so that he can develop understanding and participate in life alongside his peers:

  • Play: needs help initiating play with peers. Make visuals board about "What to do at recess and lunchtime" (almost finished). Instruct L's aide how to use the board.
  • Social stories to write: When my teacher is away; My week at school; Accidental & deliberate (the differences); Being friends – the children in my class; Disappointment (how to handle); On the bus (how to, behaviour, waiting, sitting, pressing the bell – it's OK if you don't get to press the bell for your stop).
  • Start implementing occupational therapy recommendations (to address motor clumsiness, need for sensory integration).

So many things to teach.

 

OCCASIONALLY I LET myself dip into what I call "reality autism", a forum on a big American health website. I used to hit the site a lot in the early days: drawn to the sense of being in a crisis; I needed the raw unqualified acceptance. I lurked, letting others speak my grief. Eventually I stopped visiting the site, the posts were too distressing – bewildered parents with poor education and literacy skills, hispanics, blacks, single parents living in the US on welfare and struggling to understand their child's diagnosis while coping with imploding marriages, dysfunctional families and poorly resourced education facilities.

Tonight there is a raging debate on whether wanting a cure for autism, and campaigning for governments to fund research into "fighting" it, is equivalent to eugenics. Kassiane, who describes herself as "unworthy on several counts: autism, bipolar, brown hair, brownish eyes, Slavic ancestry" is offended by Jalsmommy because her post on "fighting autism" is "trying to cleanse [people with autism/Asperger's] from the gene pool."

Jalsmommy is perplexed with Kassiane's seemingly perverse misunderstanding. Jal's loving mommy and advocate responds: "Nobody wants to be rid of you. You are not an unworthy person. Nobody is cleansing any gene pool. We want more education for autism. That is all." It's only 7.28am in the US and already this discussion thread has attracted 55 new posts. Sheena84 says: "I love my daughter to bits but I can sometimes wish life was a little bit different. It is allowed sometimes for parents to dislike some aspects of the autism world, just as it is allowed for people with autism to dislike some aspects of the NT world ... Give us a break, we all love you but sometimes have difficulty understanding you ..." But Kassiane writes back: "Dan Burton, the US Eugenics movement of 70 years ago, and Hitler's crew, they all want to be rid of me. Eugenics is wrong, people."

I tear myself away from what's going on in various sectors of what I'm now hesitating to call "the spare world". I probably shouldn't be calling what I'm living in "the spare world"; it might be offensive to Kissiane and other Aspies. But, as Sheena84 says, "Don't be too hard on the parents."

Frankly, if Luke can grow up to post a flame or write a dissertation attacking me and explaining why what I've written here is a load of crap and Nazi eugenics, I'll be overjoyed; all the years of early intervention, all the energy his father, his siblings, his extended family and I have spent in fighting for his rights will be worth it. As Reply No 3316 says: "I am not a social scientist and not here to change anybody. As a matter of fact no one will take any notice of my two cents worth anyway. Just like you, I am doing what is right to help my children. At the end of the day, when all the doors have closed and all the people have left the building, my wife and I will be the only people around to take care of my children. It is a sad reality but reality is not always fun."

 

DO I WANT a cure for autism? Yes. I believe it will allow my son to be more himself, not less. I have a dream (to Kassiane possibly a nightmare) that in the future no child will be living trapped without a choice inside the autistic isolation of the spare world. Already the new therapies, based on new and evolving concepts from neuroscientists like Dr Eric Courschene, are getting into the spare world and building infrastructure. Bridges in and out, highways of understanding.

Eventually it's going to be one big world, spare and usual, no borders, no passports, and we can come and go at liberty. The flags on the distant spires of the castles of recovery will wave, and autism – the suffering parts of the condition that really sucks, not the glamour of Aspergerish eccentricity, not the "dash of autism" that Hans Asperger said was "essential for success in science or art." – will be no more. Then what we now call autism may become an interesting neurological difference freely revealing its gifts – the mathematical brilliance, the musical genius, the scorching concentration, the perfectionism, the honesty and devotion to truth no matter what, the lack of mind games and hidden agendas, the startling and unusual thinking, the resilience that enables autistic people to live day after day in a world that constantly feeds back to them "does not compute". These are the fabled treasures that are hard to attain and won't be given up without collective human effort and difficult trials.

I write up my notes before preparing to join my slumbering husband in the marital bed.

"March 2004: there is another stage after the low point of realising the golden turrets of recovery are as yet far away and that we will spend our lives in reality, where forces that we cannot always see or control work in concert and against us. That next stage is acceptance which is not the same as defeat or fatalism. It's not 'giving up', but responding with eyes wide open to the bigger picture. The fact is that there are limitations on everything on this planet. Life plans and goals have to be changed to fit in with new realities. Shit happens. The media and the advertising industry are steeped in the propaganda of perfection, but the reality is that most people don't need or believe in, let alone live, the fantasy lives they think they should be creating for themselves.

"The golden castle of recovery may be 'out there', but it is also right here, shimmering into existence at certain times of insight, beside us all the time. It's my little boy with shining face racing along every single step of the shops on the way to school; the schoolboy with his bag on his back, holding hands with his fellow students in lines, following his teacher into music class my little boy, for at least that moment in time, able to walk over the bridge of a new understanding and meet himself in new ways."

 

BUT AS I fall asleep on positive thoughts, a harder part of me wonders ...What if Kassiane is right and all that we express and fight for, all these messy passions and imperfect lives, are taken only as proof of burdens to be shed, tragedies that divide the "successful" from the "losers", or as economic wastelands to be tidied up and relocated out of the human experience altogether ...

In the dark, my eyes snap open. I don't want to go into that kind of world, a world that is like this world, but that is a spare world. I lie there for a long time until sleep drags me down.

Get the latest essay, memoir, reportage, fiction, poetry and more.

Subscribe to Griffith Review or purchase single editions here.

Griffith Review