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Melanie Sykes on autism

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57
transcript, as best I can (bits were very waffly):

Presenter 1 (Eammonn Holmes): Our next guest, one of the most popular presenters on TV and you will see her in lots of adverts, however away from the cameras, Melanie Sykes and her young family were coming to terms with the condition that affects 1 in 100 children in this country.

Presenter 2: Yeah, Melanie;s youngest son, that's Valentino, he began to show signs of autism when he was a baby. Today, knowing more about the condition obviously, Melanie wants to share her experiences and she is with us now, along with psychologist Dr Abigail San, who works with autistic adults, I think, don't you Dr San? Um.. the first thing Melanie, I've got a friend whose son is autistic and she said it's only when you know, eventually get the diagnosis, that you look back and go "oh that's why he cried at night so much, and that's why..." so I assume it was the same for you, you didn't know

Melanie Sykes (MS): Well I think had I known what I needed to be looking for I would have seen it from birth actually, but I didn't sort of see it until he was about two. So with hindsight all the signs were there but I didn't know what to look for

P2: So was there anything that you thought before you knew?

MS: Well yeah he was a lot quieter than Roman(?) but I put that down to a personality trait and he sort of did everything on time you know and it just got to the talking time, and also I'd walk into a room and say his name and he wouldn't necessarily turn round, in fact he probably didn't at all

P1: And how did that make you feel, did you take the blame for that?

MS: Well you sort of.. and again all this is with hindsight.. but I felt quite rejected. It was so subconcsiously that I felt the rejection and as much as I loved him and he was great and he was a beautiful boy, I must have felt and I did feel that distance a little bit and you start slowly becoming more distant I think

P2: And you were working as well

MS: I was working a lot

P2: And as working mothers we all feel that guilt, that "it must be because I am away a lot" don't we?

MS: Yeah, yeah. And what happened, "Des and Mel" ended and I was at home a lot more and there was no getting away from it,
this boy wasn't the same as Roman, and also he was getting picky with food. And also I gave him separate jabs instead of MMR because I was worried about autism <rolls eyes> so he had the measles jab and within two weeks he became very very ill and then any speech that he did have just disappeared and I have been told since that if you have a predisposition towards autism which he clearly did have then that would have had a knock on effect.

P1: So Doctor, what do think of that, you are nodding

Dr Abigail San (AS): Well I think that is the age where these symptoms will come out anyway so I don't think it's necesarily linked to vaccines.

MS: No, I know, I've heard that before but in my experience and I am only talking from my experience, it was a direct link for me

P2: So once you were at home spending more time you thought "you know what there is something wrong" so where did you go
from there?

MS: Well we.. I took him to the doctor, they did the hearing tests and said he is not deaf, then they said it is autism and apparently that is the route it often takes to a diagnosis, then I went to a neurologist and he had these tests that he was struggling with because he was little and he had these electrodes attached to his head and he just didn't want to do it and I just thought well what is the point of doing this, it's his behaviour we need to tackle not necessarily that it's in his DNA or whatever..

P1: So how do you tackle this behaviour?

MS: Well I was told by a specialist "If I had a child with autism I would take them to Stella Acquaroni(?) a clinic in London who deal with the behaviours and the emotional side in autism and it's all dealt with through therapeutic means and I did go there and had a three week intensive cause with her and she has, Tino has had sessions with her every week for the last 5 years and his speech came back thick and fast and I learned to reconnect with him and I learned to understand him..

P2: you almost have to go back don't you?

P1: YOU have to understand

MS: It was a rebirth for me

P1: But what about everyone else, Tino is what about 8 years old now?

MS: Seven

P1: Seven, so say you are out, you are in a fast food restaraunt or something with Tino having a bite to eat and he has one of his affectations or whatever it is he has

MS: It happened yesterday morning, first day back at school, din't want to wear his uniform, well he tried to take all his clothes off in a cafe yesterday morning and it's horrendous

P1: Ok I can undertand how you understand that and you deal with that ok in whatever way you have to, other people are looking across and thinking..

p2: Look at that badly behaved child

MS: oh yes, thats exactly what they are thinking and there's nothing I can do about it, I know what's going on. I took him into the loo and he had a little cry and I had a little cry actually and we calmed down and we got him to school fully clothed... RESULT... and you've got to get to a point where you don't worry about everybody else looking at you staring at you and the most important thing for me is him, So you just have to get to build some muscle for what people consider socially acceptable, it changes

P2: And do you ever say to people "I'm sorry my son is autistic, you have to give him a moment"

MS: Sometimes I say he's autistic and he will turn around and say "No I'm not" and the thing is with him he is incredibnly funny and he does say things exactly how they are and he'll tell me what's right

P1: And you know Abigail, what Melanie's saying there about Tino saying things exactly as they are, a lot of people will have children that they can identify this, because there is a big spectrum, is there not in this autism?

AS: Absolutely, and I think it is important not to be looking for symptoms and grouping reasonably normal behaviours together and thinking "my child's got autism" you know its important not to be alarming about this

P2: But Melanie says knowing what she knows now she could have spotted it much earlier, so if someone is watching saying my kid doesn't respond when I come in the room or communication with other kids is not great what should they do, go to their GP?

AS: Yeah if there are various different things happening then yes it is a good idea to go to a GP and ask for an assessment at a specialist child service

MS: You know can I just say very quickly you know the poster for meningitis everybody knows it with the child with all the pointers for what you are supposed to look for for meningitis, I really beleive there should be one for autism because there are key signs and I know.. just the fact that you come in the room and he doesn't respond or covers his ears you know we would go to parties and he would sit there like this <covers ears with hands> and I thought gosh you know it's not that loud, but his sensitivities and theres lots of key things and you know if I had have seen something like that I would have KNOWN

P2: But what you are saying Dr San is that there is a danger that you see what is normal behaviour for a toddler and you go "oh my goodness he's autistic"

AS: Ands also you can have hypersensitivity and hyposensitivity to different things like colours and sounds and not be autistic

P1: So Melanie what's the progniosis for the future, you know as a mum you've got to worry about your lad and as he grows up whats the future got in store for him

MS: I dont know obviously hes going to be constantly in therapy. I do worry physically because obviously he is going to get bigger so its going to be more demanding on me so thats a concern but he is a very loving boy, he's got a great sense of humour and I just want him to do something in life that...he's actually very good at art and drawing he is a bit of a draughtsman and I just want him to find something in life he is good at... the fact that he's got the ability to love as well, which is kind of unusual in this conditon <looks to doctor for confirmation> I think hes going to be allright plus he's got me and he's got his brother who is amazing with him by the way so for me is a bright future because I'll make sure it is

P2: well that's great thanks for talking