Music chosen by Sarah Tai, Ciaran Dachtler, Jake Bell, Holly Tunnah | Issue 18 | 2020
I have a friend in the Netherlands who has two boys: I know the elder boy has autism; I have a feeling that her second is also autistic but we’ve not been in contact for some years, so I’m not sure. I tell you this because thoughts of my friend Jenny are what prompted me to find some people to talk to about autism.
Autism is essentially the lack of three things: 1 is to do with speech; 2 is theory of mind (the ability to think what other people are thinking); and 3 is social imagination. If you lack all three, then you get a diagnosis of autism. Asperger’s is a subset but without the delayed speech. It’s all on a spectrum, a three-dimensional spectrum (although it’s commonly thought of as a line).
I set out to try and depict autism through the senses and to get more of a feel for it. There is one thing that I have learned and that is—everyone’s story is different.
My thanks to Helena Kosti in Athens (mother of two boys); to Peter Lamb in Durban (father of a girl and two boys); to Andrew Buisson in London (father of three boys); and to Ciaran Dachtler in London.
These are my autism tapes. I am sorry you cannot listen to them, hear their voices in your heads. I hope the words will speak for them.
Ingeborg Alexander, 2018
There’s a constellation of symptoms. I’ve been able to train myself out of a lot of the behaviours and socially camouflage as more normal. After a time, that physical effort of trying to adjust into the standard neurotypical behaviours becomes second nature, and then it’s essentially learned. Everything I go through, everyone else has gone through at some point in their life, but that point is typically early childhood. I’ve got to figure out that there is a behaviour to address, observe how everyone else does it and then try and get the ratios right and apply it into my own behaviour.
I was diagnosed with Asperger’s quite late. I was fifteen.
I was a weird kid. That was definitely the case. On my first Christmas and my first birthday, I had to have my presents unwrapped in a different room to me. I was hypersensitive to noise; and that’s continued on. In crowded areas, it’s hard for me to listen to a specific conversation because the background noise impedes.
At secondary school I had control over my food budget, so I would overeat to make me feel better. That’s something I’ve been dealing with ever since, unfortunately. How I’m shaped the way I’m shaped is to do with that. None of my siblings is like that. None of them is autistic.
I was taken to a child psychologist by my mum, who was afraid I was depressed. The diagnosis came out that I wasn’t depressed, just deeply unhappy; but as a side effect I found out that I was on the spectrum, I had Asperger’s. Since then I’ve become more self-aware. The diagnosis kicked it off. It was such a relief to know that there was a specific thing. ‘Oh, this is not just me being weird. There’s a framework I can work to here.’
Part of the self-analysis thing is I don’t like saying good things about myself. I don’t want to be smug or self-aggrandising. I am aware of my flaws.
Luke was three by the time we got the diagnosis. Obviously that knocks you for six, you don’t know where you are, you’re grieving for the child that you thought you had and in fact don’t have. And you see other people who have children who are going off and doing this and doing that, and your child isn’t. So it’s a grieving process and it takes a while to get through and realise that you’ve still got a son, just different.
As first-time parents we had no idea. I can see now that his behaviour from when he was six months in a little rocking chair was ‘stimmy’; a lot of autistic people do it to calm the nerves, to get feedback off their own body of where it is.
He was quite late to learn to walk, maybe eighteen months, and his speech didn’t develop quickly, but we had nothing to model it by. At one point they thought there might be a hearing issue, so we had that checked.
He started nursery at about two, and we were told fairly quickly he’s not behaving like the other kids. It’s difficult for those professionals; all they can do is drop these hints. What they can’t do is tell you to your face, we think your kid’s autistic. You almost have to find out for yourself that something’s different. Eventually, someone suggests you see a psychologist. And the clinical psychologist is the person who makes the judgement: what your child is not doing is this, this and this, and that is consistent with a diagnosis of autism.
You can be given an indication as to where along the spectrum you are, but it’s also a function of what else might be going on. In our case it’s learning difficulties—Luke’s like a four-year-old in a fourteen-year-old’s body. He’s also got dyspraxia; probably dyslexia; and difficulty with fine motor skills.
His first word in Greek language was ‘milk’. Yiannis was a very clever boy. Then in one night our life turned to bad. He was thirteen months old. Suddenly, there was a baby at home screaming because he couldn’t tell me if he wanted to drink or to eat or to play. He lost his mind ability, he couldn’t walk well, he couldn’t stand well; and then our war with autism began.
My youngest son, Rafail, was born with a problem to his legs. Their father left, so I was with two kids that can’t manage anything. Till six years, Yiannis was wearing diapers for the night and for the day. It was a hard period.
When Yiannis was seventeen months, I was bringing at home a special teacher. This woman make me feel better because I was very paining, I was very sad for my kid, I couldn’t manage all this. It’s like you have a baby and you lost your baby. You’re feeling like that, that your baby has died.
Yiannis has autism and mental disability. Autism is hard because the kids are in a different world, in their world, in their body. And you have to give them a hole and to pull them out from there, to give them light, to come to our world.
There are many levels that you pass. Thank God, I was strong, I was love him very very much. I took help from the specialists, and I must not to take medicines. I have to make my brain to work differently. Everybody, we grown up in our families with the ways to do that when you get old, when you get married, when you get kids, your mother, my mother, gave us some rules, some methods, some ways, how to mark our life. There was nothing there. There is no instructions.
My firstborn turned six in June, and that’s a girl, Michaela; and then little Vinay, number two, he’s turning five in October. We’ve just had another little boy, Michael; he turned one in March. We were fortunate that Vinay was our second-born because we had the experience of being parents. My wife is an incredibly wise woman. I recall her saying around nine months that something was different with this boy.
They say fathers of autistic sons are notorious for not picking up autism. I was a perfect case of that. My approach was, ‘Do whatever tests you want, but you’re wasting your time.’
My one brother is a neuro-paediatrician and my wife’s older sister is a paediatrician. When my boy was one and a half, he was taken to a host of doctors to eliminate possible scenarios; we went to Cape Town to have that done. My sister-in-law had an association with Stellenbosch University, so we had access to professors in the medical department. Durban is still a backwater when it comes to autism.
What we didn’t realize was that we, the parents, had diagnosed our son at a very early age. Most specialists will only make a diagnosis when the child is three. So we had to wait. After the assessment, suddenly doors opened and we could get access to therapists.
He’s still non-verbal. If he doesn’t talk by five there’s a ninety per cent chance that he won’t talk. But he takes everything in. You can see it. And the therapists have warned us—little Vinay understands everything that is said to him, everything that’s done to him: the difficulty is feeding back to the outside world.
The problem with the child that knows too much is that the frustration levels are raised. I don’t mind having an autistic child, I mind having a frustrated child, because then he’s unhappy.
Luke went to a nursery for children with a mix of disabilities, terminally ill, children who couldn’t speak or move. Then he went to a mainstream primary school with an autism unit. Some kids there were very sweet—but it became too difficult for him to participate, and that’s because of his learning difficulties, it’s not a function of his autism. Now he goes to an autism school in Kent. A taxi takes him to school every day, along with some other kids. There’s ten kids in a class, so it’s quite a small school.
It’s all state school. When you get into special needs it’s almost the worst thing to be doing private education. A lot of people go back into the state school system—which is free, but you have to fight for everything. My wife has been very eloquent so we’ve been able to argue our case. You look at other people and think, there’s probably quite a few being ridden roughshod over.
Luke’s fourteen, so he’s doing things like motor mechanics and animal care. He does cooking at school on a Thursday and he’ll always want to show me what he’s made. If I get home late, he’ll take me to the fridge and say, ‘Look’. And they’re normally very good.
There are places around where they can work, farms that take on kids with special needs. I don’t know where he will end up but we’ll keep him in education as long as we can.
When he was younger we had little trains that went round in a loop and he would sit there and watch them and watch them. Now, mostly he plays with Pokémon. There are six hundred Pokémon and he can identify them. There are four massive buckets of soft toys under his bed and there’s more in the loft. He’ll never go anywhere without two or three toys. So it is problematic sometimes, because he might get them dirty or lose them; but, it’s a fact of life. He knows all his soft toys. The trouble is, he’ll put all of them on his bed and he has to still get into his bed and I have to get on his bed to read him his story, so we have to make some room, so I put them in the buckets, but there’s normally a top twenty which will need to come with him; and he will hunt them out. We’ve been doing this for years.
Luke’s not hugely tactile. He was fine as a kid but now he doesn’t really want big long hugs from family members. A cursory hug, that’s fine, job done. But he’s not averse to touch. He has a sort-of girlfriend, at school. They’re well matched intellectually. It’s quite sweet. She came with us to the pantomime and they sat together. He says he likes her. But he doesn’t volunteer a lot.
He loves the Labrador, it’s his dog. We got her as an autism assistance dog, but he didn’t really need it. He quite likes going for a walk with the dog, not that he interacts with her on the walk, but he quite likes doing that. Whenever he sees dogs out and about he’ll want to go and pet the dog; actually, it’s quite an opener with people, he’ll go and talk to them and say, ‘What’s your dog’s name?’
Luke is quite gregarious, almost too friendly; he’s got an innocence.
Vinay loves being kissed and hugged and mauled—he doesn’t have a choice because that’s how I am with my kids, I just eat them up.
He has no problems with hearing or sight. Crowds can overwhelm him. He scrunches his eyes up when loud sounds are jarring him.
He is very tolerant towards his little brother and he tolerates his sister, but only just. He completely ignores other little children—he’s oblivious to them. And animals. We’ve got ducks and we’ve got chickens and we’ve had birds and rabbits and guinea pigs and he’s completely disinterested.
He makes little sing-song sounds. They say that the sound is maturing: it’s acquiring more mouth movement and articulation. So we encourage that. ‘Oh my God, you’re talking to us, oh that sounds so lovely!’ He occasionally says ‘ka-a-a’, because he wants to go in the car.
A therapist told me: just because Vinay can’t ask doesn’t mean he doesn’t have a preference; simply hold up two pairs of pants, say ‘Which one, Vinay?’ and he will indicate which one he wants. The next day we did it and a little finger went up.
He’s got some very obvious ‘stimming’. He likes to jump. So we bought a massive trampoline; he loves jumping on that. He loves swinging. So we’ve got this lovely jungle gym and our helpers all know to swing him, often twenty minutes at a time. He loves being squeezed and touched and compressed.
Sometimes people misunderstand his screaming. It’s not like a child in pain or fright; there’s more of a melody, just high pitched. We’ve got used to it. A neighbour complained about his screaming in the mornings but I’m not stopping my child from going to the swing and doing his stimming. He needs to self-regulate something in his little body. But we’ve got to watch out. Sometimes he bites people when he gets frustrated. If that happens we give him a tap on the hand. The next thing is he tries to bite himself. That’s even worse in my book; I’d rather he bite my hand than bite himself.
You try and give social feedback. You put your hand to your mouth and say ‘Shh, shh, shh, shh, shh, it’s too loud’ or we try to distract him so we start stroking his little arm. Touch is good if it’s firm. To calm him down you press his feet into his leg and press his calves and his little knees and you do the same motion with his little hands.
We’re quite stubborn parents. You do need to stand your ground, otherwise these disabled kids will always be kept at home.
When you grow up with a disabled sibling, as I did, you’re so accustomed to disability you’re not scared of it. Vinay has only now been potty trained—we had to fly in somebody from Jo’burg for three days to do the potty training—but prior to that he would poo on the floor and mess around with it out of curiosity. That didn’t freak me out. My little adopted sister had had so few senses to rely on aside from touch and taste and smell; and frankly, poo is very stimulating, it smells, it’s got texture.
Vinay’s a beautiful child. My little sister had a very obvious disability and she looked disabled. I’m glad for my boy that he’s a good-looking child because people will be a lot kinder to him.
I find it amusing when people talk about autism in positive terms. I see autism as a complete theft. You’ve got this beautiful child and you can see the difficulties he will have to face. Would you prefer your kid not to be autistic? Obviously.
One of the things about having collections is that you’ve got new stuff to show other people, so you’re vicariously discovering it again yourself. I’ve learned not to stare at people while I’m introducing them to films. They know me so they’re used to that but it is one of the things I’ve trained myself out of, because I’m showing them that film for their reactions to it but I don’t want to dilute the experience for them by staring at them while they’re watching. No, that’s distracting and kind of creepy: stop doing that. There were loads of little behaviours I trained myself out of doing.
Eye contact was a common problem certainly in my primary school where my teacher referred to me as learning through osmosis. I was sitting there staring into space. They were talking: that was the information I required—I didn’t need my eyes to absorb any of that.
I was an awkward kid in many ways that detracted from the fact that I was fairly bright. There were behavioural issues. There was certainly a temper thing. I’m not sure how that’s bundled into Asperger’s. Generally, how I was gave rise to some interesting styles of bullying. Weird kid, not socially well-adjusted, I was frequently on my own, just reading stuff outside; so I was a bullying target throughout most of my education.
Slow rhythmic clapping—tying into the noise sensitivity thing. Or chanting. They wouldn’t leave me alone. So I’d lose my temper and attack them, whatever, and so the teacher comes, ‘Why were you attacking them?’ ‘He was clapping at me.’ That doesn’t hold water, that’s not a thing.
At secondary school, it was more along the lines of again the loner behaviour.
I went to a grammar school. In terms of academics it was good. In terms of pastoral care it was rubbish. My mother had to do a lot of fighting after I was diagnosed.
I read encyclopaedias, so I would have these formal cadences to everything I said and would talk in slightly obscure language, lots of polysyllabic words when they absolutely weren’t necessary and sounded strange coming out of a thirteen-year-old.
There was a Young and Gifted thing that allowed me to do things like Middle English poetry. I liked Latin. But there were very few subjects I applied myself to; unfortunately, Latin wasn’t one of them. A lot of how I did was so tied to whether I liked the teacher. I was a B student in the end. I probably could have scored higher; expectations were higher. I just wasn’t engaged with anything and having generally a bad time.
I made a bit of a mess-up of university; I don’t think I was emotionally or psychologically mature enough. I failed a couple of units in my second year, didn’t take the resits, I don’t know why even now, and then for a decent chunk of the following year I lied to my parents about going and of course that was one of the worst years of my life. It was a very shameful time. After my parents found out and we had the whole conversation I went back and applied myself and came out with a 2:1. People just see 2:1 and that’s it; but for me it was one of the worst periods in my life.
I owe a lot of my social normalisation to the hobbies I have. I’m playing war games with other people, playing card games with other people. I went to AdeptiCon for several years in a row—that was my holiday, go to Chicago, go there. It’s been very socially freeing. You’ve got the baseline underlying hobby to talk about; you could talk for half an hour and then, ‘Oh, by the way, my name’s Ciaran, what’s yours?’
Everyone’s kind of weird. I don’t want to meet the 100 per cent normal person because I think I would be probably kind of bored? As would they.
After all these years Yiannis began to speak. When he was five he say to me in Greek, ‘Mama’—and you understand I was crying. It took me very long time and many years to hear this beautiful word.
His brother helped him very much. Rafail take him and stay there on the floor and play with cars or balls. He understands very well Yiannis. And Yiannis loves him very much and shows his brother that he loves him by his way. No other family could love more.
Every Saturday, Sunday, everybody is in my bed and we stay there for two hours and we are laughing, we are playing. Iannis, you have to see him to understand that he is happy: he is making a movement like a fish and he is trembling his body and he is making a noise ‘a-a-a-a-a’, a happy noise.
Every Saturday we are at the sea. All August we are in my village and every day we are at the sea. I’m yelling, ‘Get out now! You are one hour there!’
Yiannis didn’t use to eat green things. So the toilet for him was difficult. I made him to drink or to taste. I was putting something on my finger and, as soon as he saw that, he was running around, I was running after him to take him to taste this from my finger. And month by month, step by step, now Yiannis eat the most vegetable at home.
When Yiannis was three and we were going to the playground, he couldn’t take all the noise, so he was trying to get out, he was beating the bars, and then he was on the ground, he was so angry, he was beating himself, tragic tragic.
You don’t know what to do the first time this happens. It is a shock. You are thinking, now what? So I was taking him and his brother to the sea or to the mountains. I make solutions for my family. And step by step we were going to the playground for five minutes, and six minutes, eight minutes, and step by step time by time, now we are going to the playground for two hours, and I tell him, ‘We have to go home.’ ‘Not yet! A little more, Mum, a little more.’ This is what you can do with years of work.
Acceptance is the magic word. If you accept your baby, your boy, your kid, you can do many things.
My family was not aware of autism—they assumed it was something they can get for themselves, that if it is a ‘flu they can get ‘flu. Many people thought that. If my son has autism, their son can take it from my son! And I was very sad. We are not bad people: we are different. Why they cannot accept my kid?
Here in Greece there are mums that they are hiding their kids. There are mums that they put these kids in hospitals and they are going on with their lives as nothing came up. There are mums that they have these kids like dogs, they don’t pay attention. Many many mothers are taking medicines for themselves. Because it is hard.
I have other mothers, friends, that because your life is changed, totally changed, everybody take you out of their lives, because you can’t discuss with them when you are out for a coffee, you have to take care of your baby. And people left us.
And I make a new life, that I’m Yiannis’ mum, not Helena, I’m Yiannis’ mum. I’m alone, I have divorced, and I have two kids. This is me and my family.
We hear a lot of jibber jabber from him. We’ll be in the car, all five of us, and the one thing you can guarantee is there won’t be silence, because he’ll start going on about his special thing; it can get quite intrusive, so we’ll just say, ‘Luke, quiet!’ And he will quieten down for a bit.
If he’s upset—the homework is the trigger word, to be honest—then he’ll go off, shout, get really cross, ‘I’m not doing this’, get quite enraged. Usually he calms down. If it gets really bad, we might have to take one of his toys away; that’s normally as far as the punishment goes.
A lot of the time he’s by himself, watching YouTube and listening to music in his room. It’s typical teenage behaviour.
He’s a difficult photographic subject. If you catch him naturally, you can get a good shot. The trouble is, as soon as he sees a pose coming up he will put a grimace on, which is his view of what a smile is. It’s difficult to get good pictures with Luke. But they do exist. I do a good search at the end of the year when I’m making a calendar for the grandparents.
Because Luke’s one of three, and I’ve got a wife and we’ve got a dog, you know, the house is busy, there’s always something to do, whether it’s sorting all the washing out, taking the dog for a walk, doing the kids’ homework, or the seven-year-old demanding our attention as he does so often; there isn’t a lot of time to sit.
The best thing we ever did was have two more brothers. For him. Rather than just sitting and focusing and thinking. Because you can see that with some other parents and I’m glad we’re not there. I just don’t even want to think about that.
I’ve absolutely no idea what life’s like through his eyes.
After many years I get to know a man, Pavlos, that loved us like the way we are. I was denied in the beginning. ‘I am not for nobody. I have my life, it’s difficult, I can’t say to somebody to change his life for mine. You have to go out to find another woman.’ He didn’t do that. He told me, ‘I want to be with you.’ In the beginning no, I didn’t trust him. But by month by month… I trust him. And now we are living all together in my home.
I am there to translate Yiannis’ words or his movement or his glance.
He has no the manners that there are for us. If he wants to pee, he doesn’t care where he is or who is around, he will pee! And we learned him that this is not appropriate. You have to go there or to do that. He used to run, to do turns around himself or to throw down whatever he didn’t need. Now Yiannis goes to the playgrounds or restaurants and he is very very nice.
Now we can see if he is unhappy or not. He is speaking differently, no right or clear but you can understand him. I am looking at his eyes, I’m looking at his body, if he’s calm or if he’s anxious.
I am in the middle. For him, for his life, for his little brother, for my ex-husband. Autism are good people. But you have to change your mind to understand them. And thank God I can manage that. I am thinking differently. I see things from many sides, not from the way I used to see.
There is the rumour that autistic does not see you in the eyes. From the first moment Yiannis was looking at me. Me, not the others. Me only.
I was in the pet shop getting my daughter a parakeet and bumped into the father of an autistic son who’s nine years old. Long story short, the mother refused to have another kid because there’s a higher risk of autism.
We took the risk of having another little boy. Having a third kid was a conscious decision. They say autism hits at eighteen months and that it has a genetic base but may be triggered by environmental factors. All we can say is that at present we have got a fat little healthy fourteen-month-old.
The reason why we have Michael is because there’s the real possibility that Vinay will always need to be taken care of. I’m one of seven, so my approach is that siblings are a support system. I’ve got a beautiful little girl, she’s loving and caring; if something happens to us, it’s leaving her... So, yeah, more kids.
If you can afford it here, you can get the therapy. But the alternate providers are not cheap. In South Africa there are a lot of poor people who could not afford this type of therapy by any means.
My wife is a university lecturer. She’s visually impaired so she can’t drive, and we have to take that into consideration with Vinay’s therapy.
He’s at school from eight until twelve. He has one hour OT a week and one hour of speech therapy and we send him to extra activities such as swimming. We have an au pair and a full-time helper.
Getting time to implement the therapy is problematic. When you come home the helper is exhausted, the kids are tired, it’s not like you can sit down in some regimented therapy type environment—and he doesn’t want it. Vinay wants to be hugged and kissed, he hasn’t seen his Mum and Dad the whole day.
You broaden your palette as you grow up, at least I hope you do. I really like Dire Straits and Madness and the Specials. I like skaa and bluesy sort of stuff. I’m a fan of modern progressive rock and the spin-off from that into progressive metal, there’s a lot of hip hop I like, there’s a punk band I’ve just got into, a lot of synth stuff, there’s so much that I explore and pick out.
I’ve been lucky: I can be quite funny. One of the things I found out at university is that I really liked presenting in front of my class. The social roles are clearly set, unlike in a conversation; I’m the presenter, they’re the audience, and that’s clear-cut, I can understand that. I have an interesting use of language and relatively good delivery if you like dead-pan (I do that a lot) and so I would get laughs. It was positive reinforcement: they were laughing, so it was good; and it was laughing at something that I deliberately put in for them to laugh at, so again, good, it meant they were paying attention and would be more engaged to listen to more of it. I had some of that natural low-lying comedic ability or use of words or wit or whatever you call it. That’s something socially I lean on a lot. I like making jokes, I like getting that positive reaction; you can’t misinterpret it. It’s a much simpler emotive response than a slight shift in expression or the way someone sounds in terms of vocal intonation.
I’ve got a bit of a tin ear for vocal intonation.
Everyone’s on the spectrum to some degree, it’s just a matter of severity. ‘Severity’ makes it sound bad but you know what I mean.
© Norton Rose Fulbright LLP 2021