Captions by Ashlee Scholefield. Edited by Ingrid Lauder. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014 SOFT MUSIC One of the really hard things I found at the beginning was I hoped Claude would be mild, and nobody could tell me at the beginning where he was gonna be. There's an awful lot of unknown, and so, maybe it's all going to be fine, and then another day, you'd just be completely overwhelmed by the idea that he's gonna be non-verbal and, you know, severely disabled. MELLOW MUSIC You know, it's a really tough process to go through to accept that, OK, this is what I've got, and it's OK. Martin and I often say, 'We couldn't love Claude any more if he was normal.' I mean, it would be nicer and easier and all the rest of it, but we wouldn't love him any more, and we don't love him any less because he's the way he is, but it just takes a` quite a lot of time to get to the acceptance that, yep, it's` you know, that's Claude, and you know, that's fine. Ros Hill has spent her working life studying the mysteries of the mind. She's a neurologist, a doctor and a specialist in disorders of the brain. Claude, come here, please. But when it comes to her own son, the mystery remains. He's found some shorts. Martin, he's got shorts. Can you find some undies? Here you go. Claudies, undies on, please. I can remember when Claude was first diagnosed, thinking, 'I'm not that person,' you know, 'I'm the person on the other side of the desk,' you know, 'I'm the doctor telling the family 'that your` you've got this problem,' you know. I never saw myself as the person on the other side of the desk. It just didn't seem` And I was, like, 'I can't do this,' um, and` and feeling overwhelmed by it, um, but you actually have no choice, pretty much. You have to actually still get up and, you know, do all the banal and drudgery things you do every day, and you don't have any choice. Claudies, sit on the couch, please. Claude. Sit down. Uh-oh. (HUMS MONOTONOUSLY) He mostly is on the move. I'll just put my bag away. When he gets very tired, he will sit on the couch for a little while. He likes to twirl, and if he can't find something handy like a scarf or a belt, he'll just get a long piece of toilet paper. SOFT AMBIENT MUSIC He mostly likes being where people aren't. If people come over to visit, he'll usually absent himself, and he'll be wandering around the garden. SOFT AMBIENT MUSIC CONTINUES q He's just endlessly roaming around, and anything that has changed from the last time he was in that spot, he will pick up and walk off with it and examine it and eventually lose interest in it and just toss it. Now, it seems as though throwing things into water is endlessly fun, so your cell phones, your electronic keys, your remote controls` It's the first place you look if you can't find anything ` especially smallish things ` in the pool. Claude appeared to develop just like any other baby, until the age of 2, then he began to regress, losing language and becoming fixated on things, like watching a cartoon programme over and over. GENTLE MUSIC As a neurologist, Ros was keenly aware of what that might mean. There are some core features that you see in autism, and the first is to do with social and communication and interaction, OK, and the second one is to do with, um, stereotyped behaviours. Bring your belt. 'So for Claude, the stereotype thing is twirling things ` that can be visual things as well `' Come inside. twirling the` the wheels of the car, rather than pretending to drive along the road. Um, and then you can have that with or without intellectual impairment, so you can have normal or above-average intellect but have those social and communication difficulties and that need for rigidity and sameness and those stereotyped things. Claudies, come sit down, please. MUSIC PLAYS MUSIC PLAYS Sit down. They can see Claude has the full house ` that he's got the intellectual impairment, and he's got almost no language,... MUSIC CONTINUES PLAYING ...and he's got the stereotyped behaviours, um, and the` and the, you know, almost no real, sort of, social interaction, communication, so that places him at the severe end of the scale. (HUMS MONOTONOUSLY) (HUMS MONOTONOUSLY) Um, this is the sort of noise he makes a lot of the time, and I'm not sure whether he does it because it blocks out a lot of the environmental noise, and it's kind of predictable; you know, it's his own sound. (HUMS MONOTONOUSLY) He seems quite happy, so this is one of his kind of perfectly happy noises. He has a variety of clicks and other sounds he does. Claude. Claude. (HUMS MONOTONOUSLY) But, yeah, no, this is` this is normal for Claude. But, yeah, no, this is` this is normal for Claude. (HUMS MONOTONOUSLY) Squeeze? Squeeze? (HUMS, GIGGLES) This is a sensory thing, that he` and it's the well documented that a lot of people with autism spectrum disorders like firm pressure, so, um, just like to be squeezed and squashed, and it must be something sensory ` that they feel more comfortable with it. (CLICKS TONGUE) (CLICKS TONGUE) What is it, Claudies? I... ss... ss... squ... squ... Squeeze. squ... Squeeze. Squeeze. (HUMS MONOTONOUSLY) (HUMS MONOTONOUSLY) The only way to get him to talk is for him to really want something enough that the only way he'll get it is if he says something, cos he doesn't use words very much at all, even words he's got. So if you can find something that he really likes, and then make him use a word, um, to get it, like 'squeeze', then, um` or something he wants to eat, um, it sort of forces him to use some language and try and, you know, understand what the` otherwise, I don't thing he really understands what the point of language is. Hi, Da. Hi, Da. Hi, Annie. How was school? Hi, Da. Hi, Annie. How was school? Good. Hi, Ma. Hi, Ma. Oh, hi, Annie. How was school? Good, good. Good, good. Good. Have you seen Claude? Nah. Nah. Just check on him for me, please. Nah. Just check on him for me, please. Sure. CLAUDE HUMS IN OTHER ROOM Hi, Mr C. (HUMS) Claude, hello. Hi. Hi. Hi. Hi. Hi. Hi. Hi! (LAUGHS) Squidge over. Older sister Annabel is one of the few people Claude responds to. Good boy. Hey. Did I say you could get up? Too much noise, too much touch, gives him sensory overload. (SQUEALS) Woooh! But with Annabel, he is content. Good boy. Good boy. (LAUGHS) GENTLE MUSIC He doesn't really live in the same world we live in, in the sense that he` he more lives in his head. We tend to think of it like we're kind of tools, so we, um` he uses us to get what he needs. Whether he knows who we are or whatever, um, I'm not sure. Um, I'd like to think so. Um, he's definitely more comfortable around us than he is around some other people. Um, yeah, but we're not really sure what goes on in that head of his. Yeah. SOFT AMBIENT MUSIC So Claude would have room to roam, the family moved to a farmlet in North Auckland. MUSIC CONTINUES They've tried every avenue to help Claude ` hundreds of hours of therapy, expert advice and medicines. We feel as if we've done everything we can do along the way to try and help him and try and understand what's going on. Every therapy, every diet, every supplement, every drug. Mm. Mm. It's all been tried. We've done as much as we could, which is what you want to feel ` that in the long run, we've tried everything we could and` that was safe and that we were comfortable with, and so, no, we've done a lot over the years, but, um` And it's hard to know he would've been if we hadn't done all that. Hi, Claudies. Do you wanna come have some dinner? You been playing the piano? Eh? Plink, plink, plink. Show me. How were you playing? (TAPS PIANO KEYS) Good boy. Again? Do it again. (TAPS PIANO KEYS) (TAPS PIANO KEYS) Good boy. For every parent with an autistic child, the big question is why. (HUMS MONOTONOUSLY) There are a lot of things that fall into autism spectrum disorders. It's a very complicated thing, and` and, you know, you try and figure out can you find what is the underlying problem for Claude. And so, you know, you do all the tests you can, and... But, no, he's a mystery. And, you know, the brain as it develops is completely mysterious, because he seemed to be on this trajectory of improving, and then he` then things changed, and he lost a lot of language and skills he had. Trying to understand what's going on in the brain with that is really difficult. RELAXED MUSIC Unlocking the causes of autism ` it's the focus of at least a dozen studies worldwide. So when Ros Hill got talking with a geneticist friend, they decided it was an opportunity for a leading university like Auckland to contribute. BOTH CHAT INDISTINCTLY Minds for Minds is a study that brings together scientists and the autism community with a common goal ` finding the genetic causes of autism. OK, team, just a reminder that, um, whatever information we send out, include this Minds for Minds logo. Our dream is that we'll be able to focus down on the same group of families that are affected and bring to our understanding of those families different aspects, so genetics is one aspect, microbiology is another aspect there, um, psychological diagnosis is another aspect, and we will` we're inviting any who has an interest in the research of autism to join Minds for Minds. 'We're part of a world effort to try and sort this out. We'd like to be the best and the first, you know,' to make some major discoveries. It's exciting, but it's a completely different thing when you have the passion of this is dealing with the condition that my child has. It's really important for us to have, um, controls, as it were, so someone who's on the autism spectrum, um, family members who are unaffected and also, um, members of families with no history of autism as well. Well, you could go back to what we started with, which is families with more than one affected child, and then there are families with more than one affected` you could say more than one affected child and one of them is a girl. SOFT AMBIENT MUSIC Autism is much rarer in girls; four out of five on the spectrum are male. Jessica is on the severe end of the spectrum, and her two brothers also have autism. Because of our children, it can be a bit of a... ...daunting experience. ...daunting experience. Yeah, especially when you first meet someone. You kinda tell them, uh, we have our kids and what's wrong with them, and they kinda go, 'Oh, oh, OK.' And, yeah, and, you know, and when they` if anyone comes to the house, um, and they` they don't know how to act or react when they see Jessica Lee, mainly, playing up. JESSICA YELLS CHILDREN SPEAK INDISTINCTLY Settle down, Jess. Come on. Settle down, Jess. Come on. THUD! Settle down, Jess. Come on. THUD! Hey. Come and make your bed. No, no, no, no, no, no, no. Get off. (SQUEALS) (SQUEALS) Come on, off. (SQUEALS) Come on, off. (GROANS) (YELLS) (YELLS) Go make your bed. (YELLS) Go make your bed. (YELLS) She usually tries to, like... Uh, going out... She usually tries to, like, get the door open, tries to, like... She usually tries to attack us when she, like, gets too cross. (SPEAKS INDISTINCTLY) (SPEAKS INDISTINCTLY) She` She usually, like, pushes us away or pinches us. MARIA: Cos if we don't lock the front door, she just gets out. No, no. (SQUEALS) (STRAINS) We have had her get out in the early hours of the morning, go to the next-door neighbours',... Mm. ...and the neighbours come knocking on our door at 7 o'clock, 'Have you missed somebody?' Mm. (SQUEALS) You can't reason with Jessica. (CRIES) Jessica always tries to get what she wants. Jessica, toilet time, then car. (SQUEALS) (GRUNTS) At 8, Jessica is non-verbal and still in nappies. Come on, you need to go toilet. Her parents are following a behavioural programme of visuals and rewards, with little success so far. Come on. Come on. (CRIES) We're going to the toilet. Toilet ` that way. Look. Look. SCREAMS: No! Look. SCREAMS: No! Yes. Come on. Do you wanna go out? No. No. Yes, you do. Come on. Come on. Toilet. No. No! (CRIES) (CRIES) (CRIES) Come on. Just go sit on the toilet. Come on, Jessie. Sit on the toilet. Come on, Jessie. Sit on the toilet. (CRIES) Come on, Jessie. Sit on the toilet. (CRIES) Toilet, then outing. Come on, Jessica Lee. (SIGHS) You don't have many friends and you don't have any people to come and say, 'Hello, how are you?' It's` Sometimes it's hard, cos people don't wanna get to know you. Why we don't sometimes invite people around a lot is because we kinda get embarrassed, because the walls are just stripped where Jessica Lee's ripped all the paper off the wall. SOFT AMBIENT MUSIC It's overwhelming sometimes. Yeah, it does get to you. It` It puts a strain on our relationship as well. Doesn't it? Doesn't it? Yes. Doesn't it? Yes. Mm. MELLOW MUSIC A thousand families have put themselves forward for the study. Their DNA is collected, ready to be sequenced in the US. What they're looking for are differences, or mutations, in the DNA of people with autism. There's no doubt, because there've been a lot of studies looking at the incidence and prevalence of autism, and it has definitely gone up significantly. There is a very strong inherited component. If you have one child in the family, you have a 10% to 20% chance that the next child will also have autism. I've just loaded the gel. I'll let that run for about an hour, then I'll image it. The high-molecular-weight DNA and...? People have been looking, but of all the genes that have been found so far, none of them account for more than 1% of people with autism, so they're chipping away at the edges and finding genes, but there's still a huge amount we don't know. We were astounded, and we remain astounded, that hundreds of genes can cause autism. And you think, 'Goodness gracious, how can variations in any number of hundreds of genes 'end up with autism?' And quite frankly, we don't understand. That's one of the big puzzles. SOFT MUSIC We're going to go for a` Claude, we're going to go driving. Yes. Yes. Yes. Bother with shoes, do you think, Ros? Bother with shoes, do you think, Ros? < Yeah. Did you see I found them? Yeah, I did. Were they down the garden? Yeah, I did. Were they down the garden? Yeah, out by the spa pool. Hey, Claudies, don't bite it. Raising Claude has changed everything about Ros and Martin's lives. Your whole world is different when you have a child with autism. (GROANS) (GROANS) Come on, then. You're on a different road to most other people. Riding in Daddy's car. Your life is not going to be the same as the average family. (GROANS, HUMS, CLICKS TONGUE) Seat belt. > You're not the same as you were before. Changes your perspective on so many things. The things that you previously worried about are unimportant, and that's a gift, um, because, you know, you just` you just figure out what is important and what isn't. OK, Claudies. While Ros has involved herself in the Minds for Minds study, Martin has changed his own pathway. Come on, Claudies. A company director and a senior executive, he's held top jobs, like CEO of ihug. Two months ago, he took up the reins of Elevator, an agency that assists people with disabilities to find jobs. On this Saturday morning, it's a working bee at the Elevator workshops and a chance to involve Claude. Hi. That's as close as you get. Hi. That's as close as you get. Morning. You come to help? You come to help? Oh, he's a big help, I tell ya. So I thought it'd be nice to bring him out and introduce him and to show him, uh, where I work. I don't know how much he takes in, but, uh, you know, he's happy and wandering around. The big thing is that Claude is somewhat ADD, as you'll see. He never sits for very long. So he is wandering around and wants to touch, bang and feel everything. DING! METAL VIBRATES So health and safety's the big issue. TAP! TAP! TAP! OK, I think we'll just leave that. I know that's exactly what you'd like to be doing. METAL CLATTERS Yeah, might be a bit noisy round here for you, mate. Too noisy? METAL CLATTERS ANNABEL: Oh, see. He's gonna... (SPEAKS INDISTINCTLY) Well, going anywhere ` if you go to the supermarket, you need somebody to do the shopping and somebody to keep an eye on Claude. 'And one minute, he's beside you, the next minute, he's gone, and, literally, you can't find him, 'and you've got an all-points bulletin out for half an hour or an hour 'and find him tucked up in a corner.' The biggest operator. 'Or he'll just go along and touch things on the shelf, and, suddenly, they're all on the floor.' He's not trying to break them; he's just feeling them and sensing them and likes to bang them to make a noise or whatnot. Pick up that feijoa. That's the way ` over in the bag. That's the way ` over in the bag. I've never seen a feijoa tree quite like that. Claude. Claude, do you wanna pick up some`? It's OK. Do you wanna do some work? OK, it's very cute. Now you gotta do some more. Claude, pick up the feijoas, please. That's the way. That's the way. (HUMS MONOTONOUSLY) That's the way. (HUMS MONOTONOUSLY) Good boy. I think we're just about... MELLOW MUSIC That's great. Can we have a look at your, um, gel pictures? That's great. Can we have a look at your, um, gel pictures? Yeah, absolutely. Some of the work being investigated here has the ring of science fiction. Microbiologist Mike Taylor is looking at the connection between our gut and the brain. Could changes in the chemistry of our gut be a factor contributing to autism? All of us have huge amounts of bacteria in our guts, up to about 1kg or 2kg per person, so massive numbers of these things, and they have, um, very large effects on human health, and just in the last few years it's become very apparent that, um, these gut bacteria are involved in communication with the brain and have a role to play in a number of neurological conditions, including autism. (HUMS MONOTONOUSLY) There's a huge amount going on in terms of understanding the actual what is wrong with the hardware and the software in an autistic brain, and the list is very long of the things that are not right, so, um, people are really trying to tease that all apart. The ultimate, kinda, dream outcome would be some sort of microbial therapy for autism, so perhaps there's a particular type of bacterium or bacterial product or chemical that the bacteria produce that we could add` um, give to someone as a probiotic or in a milkshake or yoghurt or whatever, and, um` and that might alter their bacterial community in a way that sort of, um, improves some of the symptoms of autism. Looks like we'll meet again next Friday for patient selection. See you, guys. See you next week. See you, guys. See you next week. See ya, Ros. MELLOW MUSIC ALL CHAT INDISTINCTLY (HUMS MONOTONOUSLY) (HUMS MONOTONOUSLY) < Down the old cake hole. (HUMS MONOTONOUSLY) < Down the old cake hole. < The whole thing at once. 'The main thing is that he's actually, most of the time, really happy.' You have a test? What's your test? You have a test? What's your test? < I have a science test. And, I mean, that's the` that's the joy in what makes, you know, Claude lovely to have around most of the time is he's happy. Where did the stalk go, Claudies? (CHUCKLES) He just dropped it on the floor ` just ate the top and posted the stalk down. Claudies. I think he's had enough. The science may not change the lives of Claude and Jessica today, but the possibility of greater understanding is enough. What it's done is prompt our family to get heavily involved, because it` it has the potential to help other people, uh, in the future to at least understand, um, the causes of, uh, autism. It's not going to make probably any difference to Claude, but it's the feeling as if it's worthwhile having been on this road with Claude, rather than just getting through life, but if you could actually say, 'Because of Claude and that` you know, the condition he has, 'I can apply the however many years ` I won't list ` of study that I've done 'into doing something, you know, useful in the big picture.' WHIMSICAL MUSIC Captions by Ashlee Scholefield. Edited by Ingrid Lauder. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014