Light
Spike spoke his first word with his hand. The sun had risen late and bright on a winter's day, its incendiary rays dissolving the darkness at the edges of the blind. I pulled a cord and the blind folded up on itself, and light flooded the room. Spike lay sleepy amongst the rumpled sheets of our bed. He squinted, raised his hand next to head and opened and closed his pudgy starfish fist. He had made the Makaton sign for "light". We were charmed by it, as all parents are by the child's first words. I don't think we gave any thought at all to the abstract nature of the concept he had chosen to communicate. Not "Mama". "Light".
At 9 months, Spike's soft brown hair stood vertically as if plugged into an invisible Van de Graaff generator or, perhaps, rising to the occasion of his name. He was gorgeously chubby, berry-brown. He glowed. I was biased, of course, but the dozens of strangers who stopped me in the street to tell me how beautiful he was* (and, on two occasions, to give me money for him!) seemed to agree with me.
The months prior had been punctuated by recurrent wisps and tendrils of discomfiting thoughts. They wafted in like sizzling blue bottle flies. Usually, I swatted the thoughts firmly away, but they were anchored to something heavy and unyielding. I know Ben had them, too. We only occasionally articulated them to each other. Had we said the word "autism" to each other at that point? I can't remember: we'd definitely thought it, though.
Just as now, Spike was hard to pigeonhole. People would ask "Is he an easy baby?", presumably seeking some broad assessment of sleeping and eating habits and temperament. It was a difficult question to answer. We certainly were not sleeping very well. Shortly after birth, Spike had settled into waking every 3 hours through the night. Attempts to stretch the intervals were fruitless. He was like clockwork or a Japanese train, and remained that way for a long time. He found it hard to settle for naps, regardless of how early or late or consistently we attempted to put him down. In the end, we discovered that rapid, rhythmic rocking fought the calls to wakefulness or, failing that, a trip out in the pushchair. Once asleep, he would nap heavily for 3 or 4 hours easily as if exhausted, and we would have to ensure we woke him before the afternoon slipped by. He was disinterested in solid food and gagged on much of what we offered. He didn't like to be cuddled too closely. From the moment, he could support his head, his preferred position was on my lap or in my arms, facing away from my body. But he was undemanding in other ways. I noticed him, watching the afternoon's golden sun beams pouring through the living room windows like syrup. His eyes following the light in the room and not the faces. At home, words like "contented" and "self-contained" occurred to me as we read books and played peek-a-boo. He didn't really cry unless he was tired or hungry. I could easily prepare dinner without him fussing. Occasionally, I would feel a little pang. Babies were not meant to be "self-contained". They were meant to need their mummies.
During pregnancy, I had signed up to a weekly baby development email ("Your baby is now the size of a kumquat!"). They continued after birth and I sometimes had trouble reconciling our experience with those frothy and presumptive missives: "Your baby can pick your face out in a group. He will be fascinated by your face and full of glee when someone familiar comes near". Nope. Could we swap "face" for "light, shade and ceiling fans"?
Autism? That word and its question mark echoed through the following months. In the small hours of the night. While feeding Spike and with my store of will power expended, I would petition Google with incoherent strings of keywords, "poor eye contact ceiling fan hates clapping" and feel not concern or despair, but strangely out-of-body as I scrolled through the results: "Classic sign of autism appears in early infancy", "'Red Flags' That Warrant a Referral", "Worried about Autism at early age".
Outside the low-stakes confines of home and immediate family, things were more challenging. I took Spike to baby-signing classes. However, it quickly became apparent that Spike detested clapping. After each song the group would applaud themselves and Spike would stiffen like a plank and scream, setting off a Mexican wave of infant distress. I persisted for a while, thinking he would get used to it, whispering "Clapping now" before the noise broke out. It got worse and the pleasant facade of my fellow mothers slipped, so we left. It was also very hard to leave Spike with anybody, well before the age that separation anxiety usually kicks in. Grandparents and friends would offer to watch him while I went for a walk or a coffee. When my absence became apparent to him, he would become hysterical, inconsolable, keeping up wracking sobs until I returned or he exhausted himself and fell asleep.
***
I remember standing at the bus-stop en route to Sainsbury's, with a day-old Spike snuggled against me in a wrap and Ben by my side. It was unseasonably warm and I was glad of the fresh air. I noticed an older lady studying me. After a while, she said kindly, "You're doing well, aren't you?". I promptly dissolved into floods of tears. I must have been a walking embodiment of "post-partum". Utterly under the spell of my new baby, riding out the hormone crash, moving tentatively to protect my tired, bruised body. As the tears streamed out of me, I thought "Well, this is odd." Of course, this volatility subsided, but I sensed that having a child had dismantled me. My internal landscape warped as surely as if it had been struck by an earthquake.
As the months (or, perhaps, years) go by, you reconstitute and become whole again. But the effect of questioning your child's neurology is to set the foundations moving under your feet. In the early years of motherhood, there was a lot of white noise, scrambling, interference. Meanwhile, Spike was whole and perfect. In time, we would be able to set aside the seething nest of words that plucked at our nerves: "disorder", "delay", "deficit" and just see our boy.
The effects on Spike of being out in the world left me with a choice between the tranquility of home or bracing myself for one of the draining and upsetting meltdowns which increasingly punctuated our social excursions. The latter often left me feeling more isolated than if I had never left the house. I did go out, though, and the volunteers at the local Stay-and-Play got used to keeping one eye on the door, where Spike would remain, pressed to the glass like a distraught octopus in a tank. I drank weak tea, nibbled a digestive and tried to feel like I thought the other mum's must feel.
In folklore, it is said that true names have power and should be spoken out loud with caution. ("Beetlejuice!") Ridiculously, my instinctual self felt that articulating the worries might summon up a worst case scenario. So it took some scrunching up of courage to give voice to my concerns. Responses ranged from "Oh, my son does that, too", or "That's completely normal", to "Give him time". In other words, people sought to be reassuring, but en masse it was frustrating and belittling. If there was nothing wrong, then we were simply neurotic? While our worries went unacknowledged, some suggested ways we could parent differently (better?), which would send us down rabbit holes greased with guilt. It's difficult, isn't it? I suppose no one wants to be in the position of tacitly suggesting that "Yes, your child might be autistic."^
I should say that I loved Spike fiercely and earnestly from the second I held him, and we were well bonded. I was used to strangers falling a little bit in love with him as we went about our business. Even now his unfiltered joy and openness is infectious. He is shooting up - 8 years old, but his magnetism has not yet abated. A couple of days ago, on a train (obviously), a lady came down the carriage specifically to talk to him and to say "Isn't he a lovely boy? So happy!". So, while we adored and revelled in our gorgeous boy, there were unmet milestones and "red flags" flapping noisily at us. They demanded certainty. We wanted a diagnosis.
We put off going to the GP, knowing that Spike was still young and there was a high chance we would be told to "wait and see". But, by two years old, Spike's speech delay was quite apparent. His vocabulary was small and esoteric, and his phonology was disordered to the extent that it sounded like he was speaking a different language (we sent a 'phrase book' in with him when he started nursery). He called me "Undee", not "Mummy", which I loved and hated by turns. It was at this time we went to the GP, with our concerns written out in full, and asked to be referred to the multi-disciplinary team for assessment. We were referred, no questions asked.
Diagnosis was a process which stretched across a few months. There were interminable questionnaires to complete and interviews to participate in. By far the worst bit was the speech and language therapy group assessment. For an hour each week for a period of 4 weeks, seven roughly nursery-aged children and their mothers were gathered in a tiny, stuffy room in a clinic. A few toys were set out on the floor, and about 4 or 5 therapists circled the room with clipboards dispassionately making observations on the interactions between child and parent and child and therapist. I can tell you the "interactions" mainly consisted of screaming, crying, meltdowns and dissociation (I'm trying to restrain myself from writing "...and that was just the parents!"). I am reasonably confident that every parent left at least half of the sessions in tears, and the children, Spike included, obviously found it very stressful. I do hope that they have since found a more humane way to gather the data needed for diagnosis.
But at least our concerns were being recognised. For many, seeking diagnosis is like pushing on a heavy door. You have to throw the whole weight of you behind it. And then on diagnosis, the door is flung open, unceremoniously, and through it you fall. And it will feel like there is no one to help you up. We had access to speech and language therapy from our initial appointment, but beyond that, nothing. On diagnosis the paediatrician was at pains to tell us he could not make any recommendations in relation to helpful therapies, nor could he make an assessment of the level of Spike's needs or the support he might need. Neither did he point us in the direction of any organisation, local or otherwise, which might be able to support us. It was pretty brutal.
Fortunately, we were braced for impact. The diagnosis was expected. Ben has a First in Neuroscience. I had read enough about autism in the preceding two years to write my own book. We would figure it out. I probably don't need to say that it's harder when it's your kid and not a case study, but 'figure it out', we did.
***
I can't pretend it's always easy. Public meltdowns are never the high point of a day. Navigating the content and delivery of Spike's education is fraught with doubt and stress. We're still learning how to meet Spike in the middle. Sometimes we fail and do too much or too little. Our troubles are all with the world outside our door, though, or a result of our misjudgements. Well, I say "all", Spike is as cheeky and prone to defiance as the next kid. Balancing the needs of everyone in the family can be tough, too. But for now - there is Spike bent double in the street, crying with laughter as he remembers farting on the train. There he is, solemnly touching the nose of a class 900 train with his nose, as if meeting an elder of his tribe. There he goes, setting off at a sprint, looking back over his shoulder and calling out "CHASE me, Oscar!".
Everything is ok.
* and ask me if I was his nanny. Mixed race family problems(!)
^ If you find yourself in this position, my suggestion would be to say something along the lines of "You must be tying yourself up in knots about this. Go to the GP. Get an evaluation. You'll feel better if you know one way or another."
Want to read more? How people react to my autistic son.
