We did have a round table discussion that I proposed and I got the school and some of their support networks, there is a specialist teaching support wing in the County Council. We got our paediatrician and myself and my husband all together in the one room in school and we talked about him for an hour from all the different perspectives. And I thought that was really helpful. Everybody was very pleased. They said they had never seen anything like it. They had never spoken to each other before [laughs]. It was quite remarkable. And I felt that was really useful, because before that we didn’t have any other way of transferring medical information except by us taking, going to the paediatrician and talking to her and getting information and then taking it to the school ourselves and occasionally we would get her to write a letter if there was something specific. And ditto there was no practical way of connecting educational information and feeding back.

So when I first went in you could be intimidated and a lot of parents are intimidated because the professionals talk in professional language, lots of acronyms. I always stop people. I mean we have got an acronym for our Autistic Support group which is nice HAFS, HAFS rolls off the tongue, but that doesn’t mean nothing to anybody else who doesn’t know us. So I always stop people. I have learned that. If anybody uses an acronym I say, “What does that mean?” Because I understand it is to speed up the conversation, you can talk in acronyms if you are all professional. But if there is a parent there who doesn’t understand and is not used to all that kind of language, I say, “Can you speak in simple English, words of one or two syllables?” Because you have got to because I think they try, I think at first some of them do try and they do overawe you, over power you with all this language and so you end up going in. They talk about your son or daughter and you come out and you are just absolutely bemused. You don’t know what has gone on, you know.

That doesn’t ever happen to me now. It never happens I make sure. Both of us here, probably me and him, but they know not to try and kid us basically you know. We want the thing in simple.

So my dealings with professionals, at first I found that they did sort of talk down to me a bit you know, we are the professionals. I always open my conversation with people like yourself who have letters after their name, you know, you know, I have got them, but it doesn’t make any … I always walk in and say, “We are in this meeting now. We are talking about my son who is autistic and I am the professional in this room, not you. I am the professional regarding my son.” And that usually takes the wind out of their sails, which I think … But not everyone is like me. No some people are quite shy and reticent and wouldn’t feel comfortable to be able to stand up for themselves.

So that is why they have advocates so … me and him are the advocates for all our parents. We always go to every meeting with every professional body, with their permission so that they don’t get blinded by science. They always sort of seem to, once either of us walk into the room the professionals have to take on a different approach. We know they do, because we know how they talk to them when we are not there, when we have not been there and how they talk when we are there; completely different approach. So for professionals and I think if this is going out to professionals please talk to parents in simple English. Try and explain to them simply what the problem is and what you want to try and do to resolve it and try and not use big language because they don’t understand it. You know they are professionals like you. It is not their forte you know. So that is my plea to professionals.

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.

Generally how would you describe your dealings with professionals?

I think that if I was more like other business women, a sort of woman, instead of a stay at home mum I would have been dealt with a lot better. I do believe. I think if they knew what I was talking about and I went in there and I was right ‘blah blah blah, they would be treating me a lot me a lot better then me going well I think there is something wrong with him ‘blah blah blah. Do you know what I mean? I think they do stereotype, yes, that is what I think.

So you are saying not too satisfactory then?

No. No. Not when I was trying to get help for him and even now, you know, if I ever try and ring his paediatrician, well I have tried to three times in the last month and I haven’t got a single reply, I can never speak to her and she will never ring back. So it is still not very good no.

How have your interactions with health professionals been, how have they been since that period?

What interactions with health professionals? They don’t exist. There aren’t any. Who do I go to? Who knows about Asperger’s in this county? Nobody. I go to me, because I know far more then any expert in this county. I have read. I have researched. I am extremely knowledgeable and if someone wants the answer people come to me. In fact it is ironic, there is a psychiatric unit here called [name], where they put a lot of Asperger’s people unfortunately end up in there, or suspected Asperger’s people. The consultant psychiatrist phoned me a few weeks ago to ask if I could recommend any form of treatment or anywhere I could send this person for diagnosis. I get mental health people phoning me up all the time. Social workers, teachers… I am an unpaid mum volunteer and they come to me! I actually go out and do talks to mental health teams about Asperger’s syndrome because they really don’t understand what they are dealing with. So in terms of your original question health involvement, there is no involvement. There is nothing out there for Asperger’s people at all. Plus she wouldn’t fit.

Again we come to this awful, you know thing, she is not learning disabled. She is not mentally ill. She is not physically disabled. She is autistic and there is no recognition of her form of autism in this county. So who would I go to? If she had broken her leg and had autism they would treat the leg, but not the autism. If she had bipolar disorder she might be lucky enough ha ha to get onto a mental health team but they would look at the bipolar disorder and not the autism. They can only deal with what they are presented with and autism is still such an unknown quantity, untrained people dealing with it. I mean I am sorry for them. I am not having a go at them, because they have not been given access to proper training, but the fact remains that there are no trained professionals. Therefore I have no involvment with the health service at all.

And that is the biggest problem we struggle with as trying to persuade professionals who hold the purse strings what the real problems actually are and particularly when you are arguing over school placements, trying to get your child into an autistic specific education environment. These people who actually make the decisions don’t really understand the need for it, therefore, you know, will quite often just say no because it costs too much, and the fact is the earlier you put expert input into these children, the further you can pull them away from their autism, the more they will reach their full potential. They will be always be autistic but there is no reason why they should live in isolation without being stretched to their full potential and to me it is a human right to be able to do that. It is abuse of human rights not to deliver those kind of services, particularly when it is just based on budget restriction.

Why do you think there is such a lack of general awareness. Even amongst health professionals also the general public about autism?

Well when you think about it is only in recent times that it has actually been diagnosable and it is only really the last twenty years. I mean Asperger’s syndrome was only really identified in the nineties, early nineties. Autism generally was just classed as a mental health problem or a learning disabilities problem and we still seem to have not got any further. On that issue, in terms of if you look at your local authorities the team that are responsible for those bodies are the learning disability team or the mental health team. There are no autism teams. That is the first thing we need to get round to. Build up our level of expertise within the professional bodies by seeing it classified as standard lone condition.

You know, I will give an analogy, when you present yourself at A & E at hospital with say a cardiac problem you don’t expect to be seen by the ears, nose and throat specialist just because he happens to be on duty. Well that is what is happening now. We are having generalists providing services who are not experts in the field. So that is what we need to do. If there is a shortage of plumbers we try and develop more plumbing skills through the education system and NVQ system, don’t we? If there is a shortage of electricians we do the same there. But we know there is a shortage of autism specialisation but we don’t seem to be doing anything about it.

After a two year wait from the Health Authority he finally got to see an Occupational Therapist and had about six to eight sessions which were really useful and which he quite enjoyed but then they stopped because that was the end of the resource allocation.

Now I don’t understand this but you hear a lot about integrated children’s services. We hear a lot about the ways in which health and education should be working together but it just really isn’t happening and I can’t understand why the investment isn’t put into my child at this early stage to help him to write, which will him help him access more of the curriculum and help him to be more independent at school. And really help him with his ability to move on with his education.