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Jacqui - Interview 31

Brief Outline: Five of Jacqui's children are on the autistic spectrum and, as they have grown older, Jacqui has found that adult services have few resources and there is no support to help ease her children into employment.
Background: Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.

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Jacqui, a PhD student, lives with her seven children who are aged between 23 and 10.  One daughter, Sarah, and four of her sons, Mat, Luke, Joe and Ben, are on the autistic spectrum.  Jacqui describes how her family life is very normal to her and her children, but health professionals have little understanding of what life is like with ASD children. 

Mat (23) was born at 24 weeks, walked fast and didn’t speak till he was over three. His official diagnosis is PDD NOS (pervasive developmental disorder not otherwise specified).  Sarah (20) was a very quiet baby and managed to get through school effectively by maintaining strict routines and focusing on her work.  She is now at university.  Luke (18) constantly screamed as a baby. He would walk around in circles, tap everything with a pencil and insist on wearing a balaclava.  He was diagnosed with dyspraxia initially and then with Asperger syndrome when he was 8.  He found school very difficult with no statement or support and Jacquie eventually removed him at 13 because he was so badly bullied.  He has written three books including Freaks, Geeks and Asperger Syndrome and is concentrating on his photography. 
 
Joe (14) was born early and has had many problems with food intolerances.  He has been diagnosed with ADHD and is constantly on the go. He has acute hearing, smell and vision and has perceptual problems that rule his life.  He is very destructive and Jacqui has a skip permanently outside the house to cope with the fall out. 

Ben (10) was born at 25 weeks and was diagnosed with cerebral palsy when he was 10 months old.   When he was 3 he was diagnosed with profound autism.  Jacqui describes how, at that time, he had no speech, he would wiggle his fingers in front of his face and laugh hysterically.  Now he talks readily (on topics that he likes) which highlights how there is movement on the spectrum. 

Jacqui has found, since her children have grown older, that adult services have few resources and there is no support to help ease her children into employment.  While they are extremely talented in different ways, there is a lack of understanding and awareness about how hard it is for people on the autistic spectrum to try to fit into mainstream life.

 

Jacqui talks about how different health professionals use different labels for the same disorder.

Jacqui talks about how different health professionals use different labels for the same disorder.

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What happened was he was seen by the occupational therapist and I think that was probably because dyspraxia - by the time it was Luke it was dyspraxia and it was obviously more politically correct than clumsy child syndrome or minimal brain dysfunction [laughs] - but the occupational therapist assessed him for that and I think that was quite a trendy thing to be into at the time because as things become more current, as autism, Asperger's syndrome is now, the more people are more aware then obviously it very much depends on your area. It very much depends on your professionals.
 
So you could get the same child that has been assessed by a speech therapist that got a label of semantic pragmatic language disorder, that is assessed by an occupational therapist that would be given a diagnosis of dyspraxia, that by an educational psychologist would be given something completely different and the end result is that it is still the same child and it is still somewhere on the autism spectrum whether it is someone that is higher functioning, higher functioning is probably an awful way to say it, because in reality there is no such thing as mild autism. And it is something that people often misunderstand, that Asperger's syndrome is only a bit of autism or high functioning autism is milder but in reality a lot of the time the problems are more severe because Luke spends oh every waking minute trying to understand every one else, trying to run what I call an ‘emulator’ and fit in, in wherever he is meant to fit in.
 

Jacqui talks about the major planning that goes into a trip out and how nice it would be to just...

Jacqui talks about the major planning that goes into a trip out and how nice it would be to just...

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They are a strange combination considering that a lot of the issues or the main issues with the pair of them are the sensory issues. For Joe it is because he is hyposensitive and he wants all this great load of stimulation of modern mess and movement whereas Ben doesn’t want any of it, he is hypersensitive and doesn’t like the feeling of anything and he is very, very careful. If he does any painting he is holding the paint brush and wiping his hands whereas Joe just gets it everywhere. It is strange. But I mean now that they are older to take the whole lot out together is an achievement I suppose.
 
Saying that we are going to try as soon as the boys get better we are going to go out for a meal for Sara’s birthday. For her 20th birthday and when you do something like that I have got to phone the restaurant up first because they are on a special diet and I have got to make sure that there is no statues with scary faces or pictures on walls that are going to scare Ben because everything scares Ben. And that there is nothing around that Joe is likely to be able to pick anything off. So you can’t have flowers on the table or anything like this.
 
And a lot of it really you have to pre plan things to such a real major extent. But it can be done. And the main thing is that you can’t just be spontaneous. I would love to be able to order a pizza or say come on we are going for a pub lunch or something but it is not to be done. It just doesn’t happen, not in our house anyway.
 

Jacqui’s son Ben is a ‘born worrier’ while Joe is like Billy Whizz.

Jacqui’s son Ben is a ‘born worrier’ while Joe is like Billy Whizz.

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Yes. Yes. I mean going out is very difficult because everything has to be planned and Ben has his own nature bless him I suppose, he is a born worrier as he gets older. So he worries about what will happen if? What will happen if a dog comes past and it scares me? What will happen if it is too loud? What will happen if a motor bike scares me? What will happen if I see something scary? You know what will happen if Joe runs off? And you can’t cover every eventuality so for Ben it is very hard to do anything. I mean it must be an awful [lot] harder to be Ben than to be anyone else in a lot of ways because he is always worrying and he doesn’t tell people at school any of this.
 
School is to learn and he won’t tell his teachers that he is fretting about something. And he won’t because that is not what you do with teachers. You only do those kind of things at home. So he can panic like mad and hold it all in and come in and collapse on the floor, white as a sheet, and cry his eyes out because somebody said something at school that upset him and just to negotiate a day out anywhere. I mean it is like organising a NATO operation really because Joe and Ben. I mean Joe has a diagnosis of autism and ADHD. But Joe is like Billy Whizz. You know he has to touch everything. Grab everything. Charge off backwards and forwards. You know go and speak to anyone at all whereas Ben walks along extremely... if you look at him when he’s walking he’s extremely scared with his ear muffs on and very, very slowly and to organise something to do that incorporates them all is very, very difficult.
 
I took them up the seafront on the rocks last week and there is rocks that were about this big and Joe whizzed all the way down, whined over the promenade, back again, extremely scary. He is like a monkey. He can get anywhere and did all this while Ben puffed and panted and talked about climbing onto a rock that was about this big and it took him about 30 minutes and then he has to get and he is like, “Joe I have been very, very brave.” [laughs] But meanwhile Joe has caused all sorts of havoc you talked to everyone that he shouldn’t have spoke to. Got himself soaked, covered in mud, everything and Ben is like, “I have got a little mark on my finger.” [laughs].
 

Jacqui has created extra work for herself by teaching Ben to make his own breakfast.

Jacqui has created extra work for herself by teaching Ben to make his own breakfast.

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And since he could speak I have had all of this same repetitive stuff. Before he could speak I was just dragged out of bed, usually by my nose was his way of getting me up. And he used to drag me over straight into the kitchen by my nose and start yanking bowls around and you would have to get his cereal and it has to be the same thing and I have just made this silly mistake I suppose it feels like of trying to teach him to pour his own cereal. And to us, because he is physically not as dexterous as other kids and a lot of time children with autism don’t have mobility problems but Ben does for other reasons. So he has been slower to develop and he finds things manually a lot more difficult. So I have been teaching him to get a bowl out and pour his cereal into a bowl of cereal that he is allowed. But he is one, that, “How much, how many pieces of cornflake do you have?” So I would say, “So it is about flat.” “Well what if there is five more and it makes it a bit bumpy.” “Well squash it down a bit.” “Well what if that is not right and it goes down to …” 
 
So then I ended up trying to score a line on the bowl and saying, “Just up to there.” So of course he is hysterical because it wasn’t absolutely even and then how much milk? And he says, “It says on the packet 20 grams of cereal. How do you know that up to that line is 20 grams of cereal?” And to pour the milk, “How do I know how many millilitres it has got to be.” So I have to get to stage where I have got to put out the night before a flat cup of cereal and a measure jug full of milk and put it on one side. So I have actually made myself an awful lot more work by trying to teach him. I mean from his point of view you know, for his self help he needs to learn to do it but the things that you think are simple just aren’t simple, although they are very basic things.
 

Jacqui has to cut the label off clothes for Ben when she buys them in the shop.

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Jacqui has to cut the label off clothes for Ben when she buys them in the shop.

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And you know, Ben is extremely particular, you know about. To go shopping with him I take him in his wheelchair with his ear muffs on and he goes like ugh and then touches something else, and he goes, “That is minging,” And touches something else. “Merrrr…” And eventually if I get something he goes, “Maybe. Maybe. Maybe not.” So then if I get as far as that I get it out and then he will go, “Okay. I will try it.” You know so I get as far as trying it against him and then hold it against his face and he will say, like, “No, like it's minging.” And if he decides he will have something then I have to cut the label out there and then. He won’t let me bring it home. I have got to take it out. You know, they must think I am a bit mad in the shop. But to be honest it saves on washing because he just a wears a school uniform or a track suit if we go out. And that is it. That is all you need isn’t it.
 

Jacqui describes how mealtimes at her house would seem bizarre to other people because her...

Jacqui describes how mealtimes at her house would seem bizarre to other people because her...

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So now I have to be honest I couldn’t tell you what normal, inverted commas, ten year old does or eighteen year old or fourteen year old because you know this is the life that we lead now. And a lot of the times that is where people fall short when their child is being assessed because our normal becomes very, very different, but you don’t know it. If you adapt your environment because your child only wants a line of pencils on the floor and therefore you hoover around it and don’t think anything of it, that is actually quite unusual in other circumstances, but it is not something you would ever tell a paediatrician or a psychologist because you are so used to things like meal times.
 
Well our meal times are bizarre but they are not to me. Nothing is allowed to touch on the plates for some of them. You know they can’t have bits in. Sara only has things that are white; she won’t have things that are different colours. Luke only has great big mixes of bright colours. And then that is beside Sara being vegetarian, the boys both being allergic to eggs, being gluten, dairy, and casein free, all of the things.
 
But all of the like quirky little bits you just adapt to. I don’t really think very much of it, you know, I wouldn’t dream of putting gravy on anything of Ben’s because it would mix food up together and he would be heaving. But those don’t come out in doing block tests and tick charts and things like that. Those are just part of everyday life that I suppose the medical profession or the education profession will never see unless they go into the house and then you forget to even mention those kind of things.
 

Jacqui talks about the difficulties that arise if she tells her son to 'get a little bit of...

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But these are all the aspects of day to day life that don’t fit into the educational criteria and they don’t fit into any kind of medical or mental health or anything like that. But things like going to the toilet and washing and wiping your bottom and all these things and Ben when you say get a little bit of toilet roll, he gets this much and of course you can imagine what happens after that because he doesn’t like dirt and his hands are all over the wall. And these are things that you don’t really even take into consideration if your child has ordinary understanding or they are not very literal. Whereas you have got to really be careful what you say and how you are saying it. I said… Joe was.
 

Jacqui is exhausted by constantly having to fight for services and support for her children.

Jacqui is exhausted by constantly having to fight for services and support for her children.

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What sort of impact has it had on you personally? 
 
I am extremely tired. It has worn me out [laughs]. I suppose the impact it has had on me personally is that well I mean to say really the same impact parenting would have on anybody. You know if you. That is one of the hardest things because Ben is up by half past four. If Rachael has gone out to a club or something… I mean Rachael is 22, she goes out to a club and comes in drunk at half past three and makes a noise and Ben is up at half past four or Luke is up processing something until 4 o’clock. And there is no in between at all. So it is 24 hours a day every day. I mean I have actually been up 56 hours now without going to bed at all. The last time I went to bed was on Saturday. So there hasn’t been any time at all.
 
Occasionally I just like [snoozing noise] but I have had no choice over these last few days for various reasons because they are sick and that kind of thing, because Ben has a problem with his heart and his kidney as well and he has got chronic asthma so those kind of go along with the added extras of Ben you know that make having to watch him a lot more carefully.
 
I think the impact of children on anybody, anybody’s life is so profound you know and so pervasive that I am not sure that it would really be any different if I had seven kids or I had seven kids with some on the spectrum. The only impact it does make is that you have got to blooming fight for everything and that is the biggest impact. If you could go to school and send them to school and get school report and have a parents evening I can’t quite imagine life like that. But that is not what happens when you have got kids on the spectrum. You know if you are lucky and you get them into a school that does want them and does cater for them, then you have got to spend all your time doing special needs reviews and statement reviews and speaking to psychologists and going in and out and parents evening.
 
The reception with Luke was always one of two. I would either say, “Hi I am Luke Jackson’s mum,” and they would either go very red and look really embarrassed and kind of get rid of me and they would go very defensive and go, “Right, well I am well aware of Luke’s problems but …” and then start telling me everything that he had done wrong. You know, with Joe I have given up. I have decided I am not doing parents evenings in the traditional terms any more. I will just do the special needs review and that’s it because they are tormenting a lot of the time. You don’t want to put yourself in the situation where you are comparing all the time because in those kind of situations you do and I suppose those are the biggest impacts that, you know, you look round at another fifteen year-old, fourteen year old that is off playing off and getting girlfriends and I am still trying to wash his face and get rid of his dummy and it can be disheartening.
 
But at other times they are all so hilarious. I think a lot of time we wouldn’t have had the laughs that we have had. You know I suppose it is all swings and roundabouts isn’t it? Depends on your definition of normal I suppose to how it impacts your life and, you know, what you expect from your life. I suppose I have been very lucky that I have never really had any expectations.
 

A professional told Jacqui that if he had Luke for three months he could stop him behaving in the...

A professional told Jacqui that if he had Luke for three months he could stop him behaving in the...

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And I think a lot of the time the family environment is where a lot of the, or the immediate family is where a lot of parents struggle with because not only are you dealing with this thing that is thrown at you - not the child but you know the whole autism way of life - but you have also got quite often a lot of disbelief or accusation or it is something to do with the way you brought them up, from professionals and from family members and if you did something differently.
 
I had a professional that used to say to me quite regularly, “Give him to me for three months and I would stop him doing that.” And I was dying to say, “Well go on then. Try it.” You know it quite made me laugh because it is this perception that you could stop it and you can’t. I mean they are just who they are and you do what you can but I think a lot of time really don’t want to know that their daughter has got this child that may be if he is functioning at the age of two years old when they are fourteen or is eighteen years old and has still not done any schooling for ten years or that you know. It is things that really, it is something to be shoved under the carpet still, a lot of the time and that is certainly the case in an awful lot of parents that I speak to.
 

Jacqui’s daughter feels like she is living in the Truman Show.

Jacqui’s daughter feels like she is living in the Truman Show.

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Do the boys get on well together?
 
Yes. I suppose they do to a certain extent. I have to spend a lot of time explaining who meant what and why they did it because the facial expression thing is very difficult in a large family. I suppose in some ways it is indicative of what happens in the outside world, but Joe will say, “What are you giving me evils for?” when Luke is just eating a sandwich and then Luke goes, “Oh I am not even looking at you.” And then Sara says, “Oh I know you were. I have just seen you. You know, you were giving him a dirty look.” And then I have to say, “No he is just eating.” And then because Luke pulls a strange face because he doesn’t understand he looks like he is glaring and then of course everyone starts and those kind of things are always quite confusing. And of course they are also clumsy. You imagine living with five dyspraxic people. Everything is knocked over and smashed up every single day. You kind of get used to it. And carpets are a disposable item in this house. But generally they do. I mean it is just Anna and Rachael that and poor Anna often says she often feels like she is living in the Truman show.
 
I think a lot of the time Anna and Rachael find Joe the hardest to understand because in reality Joe is a very complex little boy. Little, he is not so little now but because he speaks so fast and because he is so articulate and because he can seem to be so high functioning, there is no allowances made for anything. Whereas when he was little and he was absolutely wild and he was biting people and that kind of thing it was more obvious but now, he wants to talk about girlfriends, well not for him yet, he is not up to that stage but everyone else is and because he is doing puberty everything is of some kind of sexual references gone on.
 
You know it is amazing how many times he can get that into conversation and it does seem quite ironic to be saying, “Get your dummy out of your mouth because you are making your spots worse.” It just doesn’t seem to go together somehow at all [laughs]. But, you know, they see him as being rude and being naughty whereas he is just being Joe and he has not learnt the social skills and he has not learnt the communicational skills and he isn’t at the level to be able to yet to get through that kind of stuff yet. So all of his rudeness they take quite a lot of offence to. You know, “Er what are you wearing that for,” and “What a freak. Don’t you think you look weird in that.” And really those are the kind of things that when you live with people on the spectrum you just have to accept it. You can try and teach to the best of your ability politeness and tact and stuff and Luke can do it now but Joe can’t. He has not got that yet and there’s other priorities.
 
I think a lot of the time that is what is important about parenting people on the spectrum is picking your priorities and dealing with that one and you can’t just address the whole lot all in one go because if they were doing something that is really inappropriate, like picking their bum in public or something like that then you know that is what you deal with, you don’t go dealing with tact or whatever else, you focus on that one. You know or pooing somewhere or something like that. You know things that are really aren’t done. You know those are the things you have to address before you go onto the more subtle aspects of things.
 
Luke often thinks he is Mr Accomplished who can run this perfect emulator but in reality he gets just as much wrong now as he did when he was two. It is just different. That is one of the things about it I suppose.
 

Jacqui took Luke out of school when he was 13 because the education system did not meet his needs.

Jacqui took Luke out of school when he was 13 because the education system did not meet his needs.

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And in all that time while I was waiting for Luke to grow out of things he was failing at school. You know, the school was failing him actually because he was very quiet and he was in the background and he was only doing his own thing all the time. And he ended up coming out of the education system when he was 13 with no qualifications having been round school after school. And he is brilliant. You know, I mean, he is extremely talented in all sorts of ways, but the education system as it was and maybe even as it is doesn’t cater for people like Luke unless there is somebody to speak up for them because they won’t speak up for themselves and Joe on the other hand does speak up for himself, rather too loudly a lot of the time [laughs] and consequently he is excluded regularly and he gets into trouble. He is doing OK at the moment, but it is certainly a hard slog to keep him at school because he tells people if he thinks they smell or if he thinks they are wrong or if they are being unfair and really that is a better way then keeping it all to yourself and destroying yourself which is what Luke did. But really I suppose that is why Luke also talks, and talks to people and has written his book, because he had a tough time and still does. You know he is 19 in August and he is still at home, not knowing what to do.
 

Jacqui thinks that the emphasis in mainstream education is wrong for many children with autism...

Jacqui thinks that the emphasis in mainstream education is wrong for many children with autism...

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And I think a lot of the time the education system puts, not always their own fault, puts so much sway on maths and reading and writing and all that stuff and that is all because of government initiatives and performance indicators and everything that they all have to do the numeracy hour and the literacy hour and get the kids to do these things that there is not so much focus on the social skills and all of the aspects of self help that people actually need to learn because a lot of the time most of the learning that goes on at school is in the playground. And of course if they sit under a bench or hide away in the toilet, or go in the library, they don’t get any of those kind of things and a lot of the time they don’t give people cover in the playground because it is always somebody sat next to them in class and then it is throw them out into the yard and get bullied or do the bullying or whatever it is and back into class again, whereas in reality you could teach structure and he means that and she is doing that within the frames of social environment so … and that was never given to Luke, because Luke has always been so brilliant in a lot of ways, Luke’s never been seen in need of any particular help more than an odd bit of social skills stuff. And so that is how he came out.
 
Joe’ struggled through school I have to say. We have been through about three and he is now in a mainstream secondary school with a SERF unit attached to it, Special Educational Resource Facility. And I mean we have our moments. Not to say that they understand him fully and it is perfect. They don’t and it isn’t and I go in an awful lot and have an awful lot of talks with him and an awful lot of things go on but in reality Joe is an extremely difficult child. I wouldn’t like to teach him. I wouldn’t like to teach him on my own never mind in a class with another 30 odd. So even though he has got a support worker, it is constantly saying, stop talking and keep still. Are you listening? And as well as teaching him all the stuff that a kid with Asperger's needs which is all the social stuff and a lot of the time because ADHD accompanies, autistic spectrum thing, Asperger's or autism, people in the education system or in the medical profession only see the ADHD and they see this great big buzz of activity and don’t realise that underneath it is still the same confusion as someone that is sitting in a corner with their face to the wall.
 
And all he does is throw himself in as the class clown and make a great big noise and a great big mess and get himself kicked out of virtually every class. Whereas it is because he doesn’t understand the language and because people use idioms and metaphors and they don’t speak clearly enough and because he has got such extreme sensory problems Joe really has such acute hearing and smell and vision and visual distortions and perceptual problems that that really rules his life, but people usually only see his ADHD stuff because he is just this big dangly 14 year old with a dummy in his mouth most of the time [laughs].
 

Jacqui’s family has a history of severe food allergies so she put her children on gluten- and...

Jacqui’s family has a history of severe food allergies so she put her children on gluten- and...

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But if you look back in my family history my sister has multiple food allergies, very, very severe food allergies, some with an anaphylactic reaction. Some… she had coeliac disease. My mum has coeliac disease and all of these things most of them are lactose intolerant but yet all I were doing was tube feeding Joe, rusk and dairy produce constantly and of course it was coming out both ends and as soon as it was changed and he went onto soya milk and he cut gluten out of his diet it changed, you know, and he started putting on weight and he kind of came to.
 
I tried all sorts of the biological things from different laboratories in America and they are on the gluten and casein free diets which has made a massive difference, it really has made a different to their lives. They are still on that and you can see the difference when, when they come off the diets. They change their behaviour. They change the bowels problems or you know, the behaviours everything changes quite drastically.
 
Joe is the hardest to please for that one because short of chaining him to me and gagging him. I can’t ever control what he is eating. I mean Joe is bigger than me now, now he is fourteen and he takes a size eight shoe. But he has still got a dummy and he is still now where near capable of going out playing on his own or anything. But send him off to school and he can go and swap bags of whatever and going to be an entrepreneur I think. His skills or, he took a packet of cigarettes from someone and sold them for 50p each at school and then bought himself all this food that he wasn’t allowed [laughs]. They can always find a way somehow can’t they?
 

Jacqui has tried various therapies and suggests caution after experiences with magnets and dead...

Jacqui has tried various therapies and suggests caution after experiences with magnets and dead...

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What sort of therapies did you try when you were trying all those different things?
 
We have had some unfortunate experiences with magnets. After I had – we did the documentary. The documentary went out about five years ago and I had an awful lot… I got 12,000 emails within two hours after the documentary went out which obviously I couldn’t answer them all and I still get bizarre things even now I get letters to the lady in the white bungalow in [town] with autistic children and they come to my house. It really is strange. But there are some very unscrupulous people who contacted me as well that said “Oh I have seen you on the television and we have got something that could help”. And what they did then was say well we will bring round, in this particular instance, was we will bring round magnets and mattresses that the children can lie on and it calms them down and helps them to sleep. And then of course I had said, “Don’t leave things with Joe.” Joe is Mr Picky, everything he gets he has to poke holes in. So of course he was left lying on a mattress with lots of little magnets in, only to wake up in the morning and there was a pile of magnets and a lot of holes in the mattress. He spent the whole night take them out and lining them up [laughs]. But then they charged me £3,000 for that. And when I told them please don’t leave it. And they never let up, you know, I ended up paying £3,500 because they were knocking on the door and all sorts of things. I had somebody send me a dead broiler, a dead chicken, through with feet on through the post in a box and said that if I boil this chicken for two hours and make the children drink the grease that will get rid of them. These are things that other people tend to think of.
 
But for me personally, I did something called a listening programme. There is something called ‘Auditory Integration Therapy’ which actually now I work with a charity, volunteer with a charity called Research Autism and even though I have been asked to do work with charities and be the face of whatever, I always tend to just keep out of it, because this is my real life clearing up stuff after these lot and dealing with them. But this charity, they focus on doing research into which interventions work and which interventions can be validated to as much as they can and so many parents get stuck with so much heartache and so much financial cost and personal cost because people promote whatever to cure autism, to change autism and in reality you know a lot of these things are just money schemes from other people and you are desperate.
 

Jacqui describes how the autism spectrum is not stagnant and children move along it, doing the ...

Jacqui describes how the autism spectrum is not stagnant and children move along it, doing the ...

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And he was diagnosed with profound Kanner’s autism which is quite interesting because now he is ten, he started speaking after an awful lot of work from me I have to say with doing all sorts of things and he started speaking when he was about six and a half, something like that and now he talks. Now he never stops. You can have full conversations, albeit very limited subject matter because he can always manage to manoeuvre you back round to what he wants to talk about, but now he would probably would be assessed with Asperger's syndrome. He would be diagnosed with Asperger's syndrome and learning difficulties. But his diagnosis was profound autism, Kanner’s autism. 
 
And this is one of the interesting things about the autistic spectrum is it is not stagnant. You don’t just stay the same. And there are a lot of parents tend to look at the [um] three-year-old that is off with the fairies somewhere and think goodness gracious this is it. I remember sitting there bawling my eyes out and thinking this is it, I am going to have a 40-year-old that is still giggling and flapping around in front of me and while some people do, there is an awful lot of change. We used to call it the auti-two-step. So you do like one step forward and two steps back. And things are moving along the spectrum in a lot of ways.
 

Jacqui says “it doesn’t stop when you get to 16; they go into adult services of which there are...

Jacqui says “it doesn’t stop when you get to 16; they go into adult services of which there are...

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And it doesn’t stop when you get to 16. You don’t lose the ADHD and they don’t lose their autism. They go on into adult services of which there are very few and it carries on just the same. Technically now I have only got two children. I haven’t I have got seven plus an extra two on the spectrum that are boyfriend and girlfriend of two of my kids but not accordingly to any system because they are all fully functioning adults by now that are going out and going to work but they can’t. Nor can they go on to further educations. So, that seems to be the beginning of the next battle in a way is educating people and finding ways for people to be able to help ease them into employment and employers to become more aware and more friendly and find out proper roles for people on the spectrum because they are brilliant in their own ways at their own things.
 
But if you shuffle Luke into a fast… say McDonalds or something, you know, it takes him five minutes to process something. You know anything that you said, you know, he wouldn’t last ten minutes because anything that is fast moving he can’t do and it is really a case of finding the right employer and the right position for any of these people on the spectrum and then we can all get the best of them. That is it. Full stop.
 

Jacqui thinks a lot of heartache and depression could be avoided if more training was provided...

Jacqui thinks a lot of heartache and depression could be avoided if more training was provided...

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So there just need to be more services and more input and more input from places like the National Autistic Society. They have things like Prospects that look out for people, employers that are willing to take on people on the spectrum and willing to work along with them. But it is only in certain areas and it has only got a limited amount of funding and there is only certain, you know occupations that go along with it.
 
And people need training as to what kind of occupations suit these kids rather than them all being thrown into trying things that are absolutely hair-raising. Be put in front line of a shop if you don’t want to deal with people is dreadful but if there was more education into the fact that these are ones to perhaps avoid and try something that is more solitary or more uniform or … then a lot of heartache would have been stopped and an awful lot of depression. You know that is what comes in adulthood is all the mental health issues that go along with suddenly thinking goodness I am left on the shelf. Everyone is going to work and I am not. Every one has got a qualification and I haven’t and that seems to go along with it all, you know. That a lot of the time people on the spectrum take an awful lot longer to do things and think things and process things and time needs to be given. I keep trying to teach Luke it isn’t the end of the world that you haven’t got GCSEs when you are eighteen but it is to him because he thinks what next? You know, and he doesn’t know what next and unfortunately neither do I. You know, I can’t give any concrete answers to it but the transition is something that is massively important and massively overlooked. Hopefully that will be the next stage that people will realise. That all these teenage Aspergery people will have to do something after it. So ….
 

Jacqui thinks a lot of the time professionals don’t want parents to tell them things; “you have...

Jacqui thinks a lot of the time professionals don’t want parents to tell them things; “you have...

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But in general a lot of the time I find that professionals don’t want parents to tell them things. You have to feed their egos and there has got to be a particular way that you can feed things into conversations so that they think they have come up with the answers. A bit like dealing with men really [laughs]. And if you have done that then sometimes it is easier, but really you should be able to speak straight because these are important issues. You can’t afford to wait to six months if your child is being bullied and if you get one appointment every six months or you are waiting here… I have just got an appointment fairly recently, for Matthew to go for occupational therapy to have treatment kind of thing for occupational therapy, although he is 23 and he has just got engaged. 
 
And you know he has been out of the school system for goodness knows how long and his referral was when he was 14. So … and it is just fairly recent. Sometimes things just go on and are such a long time because it is lack of resources all the way along in every way shape or form. And that is why I suppose that it would be nice if professionals would listen a bit more because if they are so short, short staffed and short of resources, and short of time then the very least they can do is actually take real notice of the people they are working with and if a parent says I think this is a problem to really listen to it and make sure that they get them within the appropriate channels. But here in Blackpool we have very little. We really do. It is a case of going it alone really to a certain extent.
 

Jacqui talks about how terms have changed over the years and how her son was originally labelled...

Jacqui talks about how terms have changed over the years and how her son was originally labelled...

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Did you know about autism before?
 
No. No. I hadn’t a clue whatsoever and dyspraxia was the first thing that was kind of bandied around in years gone by. It was called ‘clumsy child syndrome’ when Matthew was little and then changed to ‘minimal brain dysfunction’ so I think Matt got the label of minimal brain dysfunction in the first place and then they all have, they are all technical dyspraxic, that is Sara, Luke, well Ben has got cerebral palsy, but just a small severe bit, and Joe have all got the coordination problems. But I now know that all these things are all kind of on the spectrum, around the spectrum, so dyslexia, dyspraxia, autism, Asperger's syndrome, all of these things all together in some way. It doesn’t mean every child has got the whole lot but I’m one of the lucky ones that has got the whole lot in my family [laughs]. I just wish I had one that was obsessively tidy. I missed out on that one [laughs].
 

Jacqui recommends looking at www.researchautism.net where research and interventions are reviewed...

Jacqui recommends looking at www.researchautism.net where research and interventions are reviewed...

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Well actually the Research Autism charity that I am doing things with at the moment has just done a website which is very much a progressive thing. It has been updated and changed forever really. But this website is collating all of the data on virtually every intervention there is and it has got all of the countries most imminent professors and professionals. All are giving their time, great amounts of time to going through and reviewing all of the papers and all of the research and they have devised a ranking scale where if something comes out as having lots of evidence to be harmful. Then it will have a thumbs down sign or this kind of thing. And I think that… and it is very much a work in progress at the moment. You know it changes all the time. Somebody works on it full time. But I think something like that is invaluable because you can look at it… and people don’t have to take any notice of it. But you type in an intervention, type in a problem and come up with what interventions are likely to address the problem.
 
And you can get information in three levels; either basic, intermediary or advanced. And the advanced is talking about how many peer review papers and you know, how many random control trials have gone through and it has all been very much looked at from the professionals and the researchers that are reviewing all these papers. And in a way I suppose it is to be a trusted site and that is something that I think sometimes you can look at it. I have looked at it and think goodness it doesn’t look quite right or the wording is not quite right but the actual facts behind it. There is a lot of people that are very, very busy that are putting all of their time into doing something to collate all of these details in one site so that parents don’t have to be duped by very expensive treatments.
 
They can actually be harmful not just not beneficial, but can actually harm the kids and the adults so that is one thing that people should bookmark really. If I could remember the address of it; its Research Autism.net if you write it down but that is something that as it carries on I think it will be a real…. I mean it is very, very big. It has got to be to be properly used but it is something that will be invaluable. I wish it had been about before I had done everything that I have done.
 

Jacqui says you have to fight for whatever your child needs; nothing is given to you very easily.

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Jacqui says you have to fight for whatever your child needs; nothing is given to you very easily.

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And the one thing that parents always have to learn is you have to end up knowing these systems quite well because you have fight for whatever your child wants and needs all the way through. Nothing is ever given to you very easily. The medical professional often don’t really know. You are the only one that knows your child best and if you are dealing with a doctor that deals with hundreds of kids you have got to be very sure, this is what I am sure is going on. Or this is what I want you to look at if you are dealing with the education authorities. Say they really need support. Without it you know they don’t understand the language and I suppose really read up on it and know more about the autistic spectrum because unless as parents, if we don’t know, then we can’t educate people about our kids.
 
You don’t need to go and educate the whole world but the people that work with them, really do need to know because otherwise they pale into the background which is what happened with Luke.
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