Stranger In The Family (Autism Documentary) | Real Stories

[Music] he used to be very badly baby very chatty baby and that just all stopped he became very quiet the things that seemed to fit with with the fact that he would just block us out he would just sit and not really notice that we were there suddenly at 22 months he started losing his vocabulary words that he had used he just stopped using [Music] autism is a condition that can leave one child mildly impaired and another totally lost in another world [Music] it now affects about one in 500 children born each year if you have one autistic child the chances of having a second one are very high four out of five of these children will be boys and they will have a normal life expectancy at the moment there is no cure for autism I wouldn't wish an autistic child on anybody anybody bearing in mind that there are many autistic children who lead full and interesting lives and who don't cause the sort of problems a child like Patrick does but Patrick's quality of life isn't as good as perhaps we'd hoped for Patrick is 11 years old and attends Giant Steps a special school for children with autism the school is based on a Canadian model and offers one-on-one intensive therapy it was established in 1995 by a group of parents including Patrick's who were desperate to find a progressive treatment for their children parents will often combine this therapeutic intervention with other treatments such as special diets or medication to control behavior this is Joe Sheppard and her two children Oliver and Alexander both boys have been diagnosed with autism Joe and her husband Nick moved to Sydney so their children could attend stepping-stones the preschool program of giant steps [Music] stepping stones provides individual support for each child in the form of an educator also known as a shadow rolling three by three.hoorah around the face go roaming three by three the little one stops and rubs his knee that's right children with autism have trouble organizing themselves difficulty in processing sounds and learning the rules of communication first autism is a neurological disorder and what it seems to do is affect the child central nervous system and in doing that it really upsets their whole body and the whole being and it also upsets the way that they process information so it's upsetting their learning as well so if you're looking for characteristics I guess there's really four or five areas that are really affected and one is definitely communication and language - - Thomas Alexander join Thomas children with autism have poor play skills so they find that difficult to learn through play which children without on autism naturally do another one is relationships to peers or family building up social relationships with people they're very very difficult achievements for people with autism they react to sensory stimuli in their environment and that is why they do strange things or what we perceive to be strange things like getting very very overexcited when the fans switched on or watching a truck and not being able to take their eyes off it as it moves away so they react to the environment and the stimuli in it all the time which can be quite overwhelming for them Christian music Christian is for and recently diagnosed he has just started at stepping stones early intervention program he has not yet begun to speak Christian is um say about him he looks like a real little man he looks he's a toddler but he looks like a real little man and it's very difficult to say what Christian is like because it's almost like we don't know a lot about Christian because of that it's a barrier of types and and Christian is we know what he likes we know what he does during the day but we don't know how he thinks and I'm actually looking forward to the time where he is able to tell me what he's thinking that'll give me more of an idea of his personality Christian has several traits typical to autism he finds it difficult to make eye contact and therefore to engage with people Oh Christian dancing is finished nice early intervention I guess refers to catching on diagnosing children as early as two years or and sometimes just below the advantage of finding out if a child has problems when they're young is obvious it prepares them for school it teaches them some basic life skills that they might need and in our case when we're dealing with children with autism and early intervention it's it's crucial in teaching them how to communicate without early intervention I think their problems just become compounded and if not more entrenched I play that's right stand up Alexander was three-and-a-half when he started stepping stats Oliver was two-and-a-half that years difference has made a world of difference okay Oliver had a different starting position his autistic mannerisms were not so ingrained even as Alexander's work but he has developed so much more rapidly than Alexander [Music] now if child has spent five years flapping and waving their hands or tapping sticks or lining up trains or doing other behavioral procedures then it's it's part of their lifestyle almost it's their relief so trying to change that is a major major issue which will we have first ratty or bananas thank you ready okay put it in a few a child that's two and a half who's just beginning to work their brain who's just beginning to develop the the links between how they move and how it relates to their body then of course it's going to be so much easier to work with that child ah that was excellent fun children with autism need one-on-one attention it takes a range of therapies to help them develop the basic skills needed for communication one of the first steps is sometimes just teaching the child how to ask for help her peg and I helped you put the patch on I can there we go now I'm going to use one eye we go ready sit oh oh it's a bit harder isn't it ah got it one more these children find hand-eye coordination difficult often their ability to track and focus is not developed are you ready for the tricky ones what's this link doing come back again their brain can be confused out which is the left and right side of the body this happens something as simple as putting food in your mouth can become a challenge let's try the other side crawling and rolling are things most children learn naturally by children with autism often miss these vital milestones pulling developing strength and flexibility in their upper body gives these children physical confidence this is necessary for the foundation of speech and fine motor skills might be able to hold a pencil and write i'm sup ready set go three yeah Alexander let's put it on what do you want what do you want looking Christian tell me each play activity is designed to encourage the children to interact the therapists use a combination of gestures symbols and speech to teach the meaning behind words and the reasons for wanting to communicate are they didn't coach Patrick yeah so a little bit louder bit red in the middle see how they read the aim of all these intensive therapies is to help the children reach their fullest potential and hopefully lead independent lives we saw a long time he was deaf and we noticed he had a lot of sir typical autistic traits like spinning and playing with sand and which he doesn't have anymore so there was obviously something wrong with him there was no specific insert it happened relatively quickly within a few weeks he went from one type of child into another I had said to Steve there's something wrong with Patrick I don't think he's hearing and stays responses I'll you know don't worry about it I'm malaria and I think about a week or so later I just sat Steve down in a chair and I said watch this and Patrick was sitting in front of the television staring up at it with the others and I called him no response and you know I tried a few different things you know clap my hands no response you know you had have plans and you have hopes and dreams for the future and when you suddenly get a diagnosis of something like autism or any other major disability the baby you had isn't the person that's going to grow up [Music] it is definitely like the child you had has died [Music] sit Patrick started at giant steps I think when he was six we've never had dramatic change with Patrick takes months and months and years for you to see improvements in Patrick okay really with me yeah see lady e beautiful straight right Patrick is unable to pronounce his words properly some people call that dyspraxia he has trouble with his final consonants so a lot of what he says is hard to understand for people who aren't used to it he has trouble with memory recalls so to actually bring down those words that he needs to use it's hard for him to construct sentences virtually impossible although he's getting a lot better he can put three or four words together yes la me boy give me five great work it's finished that's it what do you want you want more to eat Patrick look at me look at me do you want more to eat do you want more to eat what no roll-ups obviously he vocalizes he uses his hands he uses some sign language and he actually makes some up himself so he would say you know shampoo and rub is here saying our shampoo and I understood when I said shampoo but he wasn't happy with that so he went and found a book in his room and opened the page we neither poo say that that was the particular you know package of shampoo that he wanted was really when Alexander was two we realized that he wasn't talking as much as we thought he should be he was talking but he wasn't joining his words together so we went back to see his original pediatrician he was quite concerned and felt that we should have things like hearing tests done and went and had this assessment at the Chatswood Assessment Center and they looked at the way he played and the speech that he used nothing and they said to me you know yes he has autism not severe autism but autism and you definitely need to do something about it you need to make major changes to your life whereas with Oliver I had been dying all his speech yes so from the age of 12 months or whenever he first started speaking I would write down each month the new vocabulary and when we came to about 18 months there were so many new words to be added to the list and I was coping with Alexander at the same time that I gave up trying to track all of his speech development because he was doing so well and then probably two three months later that's a lot of that speech had just gone and I was on the phone to Chatswood saying how you know yeah like Oliver is crashing I think was the term I used and then like but we spoke to you two weeks ago and you said he was fine I said he was fine two weeks ago you [Music] I'm constantly experimenting on Alexander and Oliver and it's a scary concept that whilst it's under medical supervision it really is a case of different doctors and myself sitting down and saying well you know how about we try this or how about we try that and researching the effects of different vitamins or different foods when alexander first started its stepping-stones a kind used to comment to me about her healthy his snack box was yeah he had ham cucumber and tomato as his morning tea and you know six months later we found out that that was absolutely the worst things that I could be giving him they so-called healthy foods because you know they were high and salicylates was the big trigger with the tomatoes so he can eat it well egg yolks are actually a concern he seems to have a slight allergy so in fact what I've done today is I've got two whites and just one yolk and then otherwise I used to give him boiled eggs with just the white but um that got really boring and got tired of that like sometimes the air grow I can put it on that before but the balls the fry balls are really happy if it isn't enough for so there's a limit on how much you [ __ ] prepare Sally's Arnaz breakfast okay nicely Alexander eats his breakfast take a look take note yeah then go order because yes you can have a big reward with first time when you change the diet although the work involved is initially very great and probably still is very great the effects on the child hopefully are that the child is so much happier so much healthier that the workload in fact becomes lighter now that was definitely the case with Alexander with Oliver it's a bit harder to assess it but at the moment I continue to prepare separate food for both it's a big demand but the rewards can be great too if I don't get time for cup of tea why should you special alright let's go upstairs come on someone asked me the question um you know have you accepted it now and at the time I sort of said well yes you know I think I have but no next door struggling with it but it wasn't that I had accepted it really it was just that I was surviving [Music] it's a lifelong struggle I'm always fighting I'm always looking for not looking for a cure I'm not looking for a reason I'm looking for something that's going to help them not necessary cure them help them I haven't been through a death or a loss of a loved one so I don't know exactly what it's like but I did go through a period that must have been like grief I was a long long period when we realized there was something wrong with this child I felt I didn't really know this child I hadn't really bonded with him anyway there wasn't that that same interaction that I've had with my first son I felt that I was alone I felt very much like I was the only one in the world that was going through this and while I was looking after the children's needs I was meeting all their needs I really I really wasn't doing much past that it was almost like I was immobilized one party there is no one cause of autism it can be triggered by metabolic complications such as a viral infection it can be genetic it can be caused by a pre or post natal brain injury but it is not preventable or detectable before birth john's nearly seven and he's a lovely boy i can barely find fault with him which is dreadful he is christian make a different sound he'll say oh I haven't heard Christian make that sound before isn't that great and and he's very very paternal in a way towards them it's important to remember he's still a child and quite often he gets pretty annoyed with him if they've stuffed something up that he's been working on and I I've often heard him from another room yelling out you'll pay for this Christian but mainly he's a very patient child and loves his brother and sister alexia is we used to say that she's a very sharp little thing she'd just notice everything and she's busy she goes around doing her little things during the day and she's very beautiful she's got a killer smile and she's just she's just a lovely little thing one day she was just beautiful and just developing like a normal child and then the next and I can pinpoint it to the week one week in July when I went in to get her from her room she just woken up and she was calling from issues still in her cot and I walked in and she had her arms outstretched for me but she wouldn't look at me and it was very odd but I had a lot to do and I didn't really think about it and until the end of the week when it was becoming a little it was nagging at me and and I sort of distractedly said to Angelo there's something wrong with her she's just acting funny and he said I noticed that too and then we both sort of stopped in our tracks we thought ah no it's happening again [Music] yeah in diagnosing autism doctors look for evidence in several areas these will include a lack of speech problems with social interaction and obsessive or ritualistic behavior such as lining out objects she does shown quite a lot of aloofness and she very definitely didn't make eye contact with you and those olan with anyone else even with her mother so I think we really have to score that quite highly she doesn't use gesture to try to overcome her speech problem and she doesn't understand others when they're using gestures I noticed very this quite markedly and then she does have this rather repetitive pattern of using toys here we have this lovely little line of little people that she has made for us or made herself feeling and I'm afraid that all of this does add up to what you were fearing and Alexia does have a quite significant degree of autistic disorder how does that fit in with your own perceptions and well that's what we expected even though even though it was no surprise I do have to say that there was still I was still very deflating getting that diagnosis even though I knew what it was anyway was very deflating and along with the deflating diagnosis also came the chat I had with the doctors about what's coming up in treatment in in the world of autism according to the conservative medical establishment there's really nothing there's nothing there's no treatment and and everything that has been charted in the past as looking promising hopes of fading mirrors were so it's not if you listen to too much of that you you just would lose hope and and that's not really what we need we need to grab on to something and run with it early intervention is the only thing you can do with kids with autism at the moment no medical treatment is ever suggested so Patrick's got a good sense of humor excellent sense of humor and he can be very mischievous he can be very nice to be with he's very loving who's very active when he was a lot younger and I think it was probably around his eighth birthday he became very violent and a very unhappy child a very angry miserable child and eventually we put him on a drug called risperidone which changed our lives entirely obviously things change again you might go on for six months and then you have to root reassess and add more or and and since then we have added another drug cat oppress because he had side effects for our spirit own so we can't increase that anymore we could not cope with Patrick without medication [Applause] Patrick attends a mainstream school part-time the shadows Scott is always with him to offer support the program in one hour okay successful integration into a mainstream school is at the core of the Giant Steps philosophy the children gain so much from interaction with their peers but integration is not always easy it's hard for them to sit still quietly to concentrate and to direct their attention on demand in a mainstream class thanks man good boy that we come I'm too bad where's the drawing book it's not here today have a drink hey no it's not time hit me we're gonna have the pill at 12 like we do it every day don't hit your head look at your watch yeah it's here in front of you it's on 11 when it gets to 12 you have your pill okay thank you okay okay I'm just gonna sit here you can have some time to yourself don't hurt your head have a drink it's not uncommon for him to go and hit butter wall a glass window and shattered the window as a parent it's really horrible I mean it's horrible for anyone to see it it's horrible because you feel so helpless that you can't stop it and you really have to wait for that episode to calm down and if it doesn't then you use medication as a last resort to give them a little bit more to calm him down gonna squeeze harder yeah okay one activity inside quietly without being grumpy then you can have your peel yeah okay I we need to try and use both way that you can use the outside in the playground with Molly so I might make him a few more symbols like he needs a book so he can say look I made us an Alfred and he needs a climbing frame communications vital in terms of trying to overcome some of those social deficits the children with autism have so that's communication is like that their last port of call they really don't they're not interested in it they find it really difficult to learn and to learn some of the basics of communication like joint attentional imitation are really important for pre language skills and that's very much what we focus on in the stepping-stones part of the program dress-ups it's ready which one do you want finest Ernie skinny yes can I kick anyone's ready [Music] hi Hey ready to go let's go the overall goal for this year for Alexander is really successful integration into regular school at this stage I don't really consider him to be in primary school to learn academics the major struggle for Alexander in his life is going to be social issues if you can't interact with other people it's a very lonely life making friends is the difficult concept even for any of the kindergarten children let alone a child with autism who can't communicate on the same level as the others where my role grandpa grandpa I would ultimately like to see him so that he's able to cope in the integration environment without full-time shadow how far down the track that isn't it no I mean as long as he's in Giant Steps he will have access to a full-time shadow [Music] just would be really nice to just have a normal family life these kids look normal people expect them to behave normally but of course they don't and when children look so utterly normal the pressures on on the child and on you as a parent to to present people with in with a properly behaving child is is an enormous one I mean if we take them out even to the shopping center they they all love it it's just that they they will just wander away from us we're actually you know literally run away from us choose to run away from us so it's it's hot any outings are highly stressful for us quite enjoyable for them but highly stressful for us I've had a couple of very nasty instances where he's disappeared on us we live very close to main road and accidents happen and we forget to lock the door occasionally or someone might leave the door ajar and he's off gone he's run up to the local shops and crossed six lanes of traffic at nine o'clock in the morning peak Ave not Tiffin Utley the office in the city one night in the like on the 12th floor of a bank it's got pretty good security and he whilst I was just getting a few things together take the mobile in the following morning and he went out into the dealing room and I thought well he can't get off the floor and got my things into my briefcase and came out and he was gone and he found his way out of the building and was picked up by a taxi driver walking onto the Western distributor in the dark this was like 7:30 8 o'clock at night and it was about 40 minutes before I found him [Applause] crassula and angelo live on the outskirts of Sydney it can take over an hour to drive to Giant Steps crassula does this trip several times a week well Alexia was finally accepted into stepping-stones for next year and she'll be attending stepping stones on the same days as Christian the studies have shown that children with autism need one-on-one they respond best to one-on-one therapy and they need many many hours of it as much interaction as possible can you get elephant bass I think that stepping stones has managed to get a lot out of Christian as much as he's able to give at the moment and I think they've done that with consistency and structure I think that's what he's responding to I would have liked there to have been language by now but he's obviously not at that point yet that's a bit disappointing and he's jumping yes I don't believe that it can be only behavioral therapy that will get him out of autism it would be nice to think that it would but it's just very rare that that happens and we feel that we have to look at medical intervention medical interventions just not happening in this country so we have to go out we have to go to the states to get that about a year ago I stumbled across a website for Michael Goldberg who's a pediatrician who works from California that was the first time I ever came across something that said this disorder was not a mental disorder it was it was actually a biological disorder and dr. Goldberg feels that a biological disorder is something that can be treated and and it's it's something that affects the child's immune system and something is going wrong within the system and they're getting or there are some medications that are being trialed at the moment on adults that he would like to use on children and he feels that this is the medication that will ultimately help in the treatment and cure of autism now if just Christian will eat this life will be complete come on we can all tell if Pat's going to become really sort of unhappy which means potentially violent by the tone of his voice so he often winds a little bit kind of in a protest I never and I just I want to do it but when it becomes that really high-pitched distressed when geing where you can see that he really is upset it's more than just I don't want to do it often that's like a precursor to to him becoming violent there's been a huge reduction in that sort of behavior this term and that's mainly I think as a result of him learning how to regulate his own behavior and also being given a bit more autonomy I'll give him the choice now you want to go and sit in your corner and work there and he'll say yes I think he's responding well to that Pat what did you do when you were working which one you did go to tell me sweep with the with it look at the word with it broom yeah you did a great job well done you go buy something from the shop lemonade what else have you got on your list popcorn popcorn she leads baby sweets I'm not sure about sweets when your child's younger you're still working through that grief process of acceptance and denial you work so hard you're desperate to get your child to a level better than they are now and I think in the early day she just want them to be normal put him in gently so that no but I think as Patrick has grown and got older and we have more of an acceptance of his life and our life I think you tend to relax more you're not quite as obsessive maybe not quite as passionate about it and it's not giving up it's really I think you learn that you can really only improve what you're given and if your child has a particular makeup you know you always want them to get better but you know that their level of achievement isn't going to be as great as you had once hoped for [Music] for every child in giant steps and stepping stones there are another two on the waiting list to maintain the school's one-on-one therapy the parents must raise an additional 1 million dollars each year this year we have really struggled to get the sponsor share from the attraction of funds because Sam's been an Olympic year so that meant that next year things were looking for dicey it was a wake up call think okay we've got to get back out there again we've got to start redoubling our efforts to get the funds because we don't want to have to see the children being told I'm sorry but you know we can't afford to keep you in the school any longer [Music] everybody has to do what they can and for some people that's selling raffle tickets for others it's getting corporate contacts for others it might be coming to the working bees or offering time but working in the office there's a hundred and one different ways [Music] you spend so much time working out into the ball that you almost initially first think oh I just wanted to be over and done with but fundraising aside it is a chance to celebrate celebrate the achievements of the kids celebrate the achievements of parents know that you've just you've made it for another year [Music] and just say hey congratulations I'm so pleased to see the progress that your child was making this year or look how now it's been a really tough year but I hope next year's better [Applause] we made more money this year than year before for a school with 42 children to get 900 people to born make $200,000 profits credible really it's a fantastic achievement but if you put it in to perspective it's not it's enough it's about a coin it's about a quarter of the fundraising which we do most the other fundraising is in the form of donations from individuals and companies inside integrations being the highlight of the year Alexander it's been hard for him sometimes he just walked out of school looking so every draggled and because it's such an effort for him to concentrate and listen and but I think the highlight of integration has been to see him making friends getting to know who all the children were what their names were being asked to birthday parties an enormous achievement for Alexander was not just simply going around to other children's houses to play after school tell me Sarah show me good saying show me Oliver it's Alexander and Daddy on a motorbike Oliver has had the most amazing year I think it's been a number of the pieces falling together that the speech therapy and the music there and all that all the input that's going in at Giant stamps has finally come together as one piece I think also the diet I've got to say I keep coming back to it but diet has had an enormous impact on him okay how do you cut that part I Starling okay let's see if it dies ready what about toys the player he lands on done it's going to land on the floor where to the table under the table let's have a look ready sadi if it can be done with him it can be done with some of the other children it's not to say that's going to work with all the kids we've seen certainly different progress between Alexander and Oliver but it's proved to my mind that there is often a metabolic situation that you're dealing with and you know this should be more children out there who are getting help there should be more research done into what can be done to help these kids big hugs behind Wow Wow this is fantastic come here come here it's my dad you did today what you're saying ah twice ah DJ messing with me when you see em with me I need you did a really look very definite ah it seems inconceivable that something like autism won't be treated successfully at some point and I and I like to think it sooner rather than later I don't think just seems like such a little thing I mean how do you feel can it be so see what they're talking about repairing the central nervous system yeah and things like like they like making blind people see in and regrowing limbs or organs exactly I mean how big his autism I mean surely someone can come up with something for that it can't be that difficult I mean it's probably difficult but to so many black people out there actually this belly okay let's come in suit the desk that's it fantastic what's that say couldn't tell me what it says this is fantastic man well done good morning sure got have your pill ouch oh yes is your drink in there if we look at the future for patrie providing he can maintain his current stability in everything I think he's capable of doing so many things I mean hopefully he'll be able to do some sort of paid employment which will give him satisfaction hopefully he'll be able to live in some sort of supported accommodation I mean obviously he's welcome with us for as long as he has to be with us but I think that's part of growing up and being independent and hopefully to give the rest of the family some future I guess of independence ourselves dr. Goldberg is an option that we need to try we spoke to our pediatrician we're assured that the treatment won't actually kill them that won't hurt them so in the light of that we're willing to give that a go this is going to be an expensive exercise aside from the travel costs the medication that we'll be using are actually very expensive and we have two times that by two for the two children the exchange rates not a great one at the moment that's probably the worst time to go but it's still something we feel we have to do for our children Oh what do you think the future holds for Alexander $64,000 question and don't that I think Alexander will cope with the IT world very well he's already computer literate so his speech is always going to be or lack of speech is always going to be the biggest challenge that he faces it's really hard to envisage what his future will be and I think that's one of the stresses of dealing with children with autism is that what will happen to them and you know where will they go what will their life be like in the future you [Music] who knows whether it's medication giant steps integration or all of those things I'm sure but I think the more satisfied he feels with himself that he can communicate better he can control his behavior better then you know whatever it is it's inside his brain that caused him to bring his head or get frustrated he's being replaced by satisfaction that hmm I got my message across or you know I did something that you know L me now rides up to the shop on his bike with James and I you know buys a bottled lemonade and rides back and you can just see how proud he is just just to do that [Music]

Channel: Real Stories

Views: 913,320

Keywords: autism spectrum disorder, childhood education, educational models, educational partnerships, evidence-based practices, individualized education plan, interdisciplinary teamwork, learning disabilities, life skills training, mental health support, parent involvement, school inclusivity, self-esteem building, social communication skills, social interaction, social skills, special education programs, speech therapy, student-centered learning, therapeutic interventions

Id: HZOfjMXNPik

Length: 51min 37sec (3097 seconds)

Published: Sun Dec 04 2016