Dick O'Donovan taking about Autism and the Disabilities Trust (Abridged Transcript)

I first met Dick O'Donovan in March 2000 when David (my husband) and I were looking for an autsim specific residential home for our oldest daughter Naomi, who was in the process at that time of being diagnosed with being on the autistic spectrum. At that time he was manager of Hollyrood the Disabilities Trust's flagship autism specific residential home.

Dick has a tremdendous sense of humour which is quite wicked and is very much needed when you're dealing with the day to day problems with trouble shooting how to run an autism specific residential home successfully, especially for the Disabilities Trust.

Here is the abridged transcript where he talks about autism and how to care for the adult with autism.

VW: Dick O'Donovan - we met way back in 2000 when David and I were looking for a suitable place that had not only a high standard but good holistic care for our daughter Naomi, who is on the Autistic Spectrum. You took us around all houses that you have on this plot of land called Hollyrood. We had lunch and saw a carer looking after a client - as people who come here are called, and could see that there was tender loving care there. But how did you get involved in Hollyrood and the Disabilities Trust?

DO'D: I've been in the care service since 1972 but in Autism particularly probably the last 16 years; although not with people that were diagnosed - probably longer than that. I was working with a charity in Wales that had a particularly good day service with a home running alongside, which the founder of the Disabilities' Trust - Norman Thody with Mike O'Connor was looking at at that time, and was invited to come and look at Hollyrood before it was opened. In fact when I did come I suggested that they didn't buy it! Because at the time I was involved in closing large establishments down because they were not the done thing, and then Mike informed me that they had already bought it so that was that! I was then invited to apply for the job and got. Hollyrood has forfilled need and purpose very well, because the people that have applied to Hollyrood are the ones who challenge traditional services. In fact traditional services have failed them.

VW: We know that one only to well!!

DO'D: Absolutely. Where I came from was a failing charity working with autism. I was fortunate that I was given the opportunity to build a service that would enable, encourage and enrich our service users and was given about six weeks to design the services at Hollyrood!

VW: Was that all?

DO'D: That was enough, because it was a building site at the time and I had lots of time to sit and think how would I like it to be if I had cart blanche and that's what I was given really. I was able to think about the things that we didn't have in other services like cleaners and catering staff so that the support workers didn't have to do the cleaning, washing and the ironing. They were actually there to support the clients for the time that they were here and weren't dragged of to the laundry to do cleaning and the like.

The structure of the service was built from scratch with cleaners, caretakers and handymen, through to support workers, senior support workers and team leaders. We have added to that since and of course I suppose the key post was psychologist which no service had on site. We were lucky to be able to build in a part time psychologist and have that team grow - now into four two ‘A' grades and two assistants. So we built a staff team and did a tremendous amount of training over three months, so when the first Autistic clients came in, it frightened the living daylights out of everybody (laughter) because their behaviour was totally different and totally unexpected - the severity of the autism was far greater than we had ever imagined - and was a massive learning curve for all of us.

VW: I remember when we came here you had about twelve people and lots of empty rooms and the house down the path was completely empty which you were still in the process of refurbishing it.

DO'D: Absolutely yes.

VW: But Naomi was diagnosed at the age of 28 in the year 2000 and after a big battle and lots of threats to the authorities for funding she was moved here in November 2000.

DO'D: Was it then?

VW: Yes it was and for us it was Heaven on Earth.

DO'D: We are very lucky I think. I was very lucky personally coming to the Disabilities Trust because they committed £2.5 million to this project which was a fantastic amount of money 10 years ago, and I remember before we opened to clients we had a managers meeting at Hollyrood, for all the managers in the Brain Injury Service, the Physical Disabilities Service and the Autism service, it was like a four star hotel it was absolutely fantastic! It really did look the business with the grounds a beautiful 4.5 acres and the building being absolutely superb. It's had its knocks since then definitely but saying that it meets the purpose.

VW: It does.

DO'D: I was very dubious about it because it's another big establishment for 24 people, and that tends to be against the norm. We were looking at small homely units - so what I did was split it into four houses straight away, something like four sixes or thereabouts. But it's worked very well and we have had several clients that have been able to leave Hollyrood and go into more normative accommodation. We've also bought small houses in the community that have been very, very successful.

VW: Yes, Naomi being in one of them, and I remember when you suggested it to me that she should go into a community house was I ever resistant to it! You took me to the house and it was lovely.

DO'D: It is a beautiful House!

VW: It really was and she has flourished.

DO'D: It is a quality house costing £300,000+ in a very nice neighbourhood - again the Disabilities Trust's policy is why would we want to move into an estate situation that the majority of us wouldn't choose to live there anyway. We've bought several more houses in lovely positions since then. In such, the support from the Trust has been excellent in this and we have a school now in Ascot.

VW: What age is that?

DO'D: I think they are starting from crèche - well that is the new plan, from crèche up to 18+ and the children can go to college that will be run at Heathermount which is Heathermount the Learning Centre in Ascot. It is absolutely brilliant and people get referred from there to the Hollyrood services here or our supportive living services.

VW: How different is the training for the staff here in an autism specific residential home diferent to the staff in a normal home?

DO'D: It is not just the training it's a whole philosophy that is completely different. We base a lot of our emphasis around training when somebody comes in they spend at least a couple of weeks on training, that's getting out the way all the statutory stuff like lifting and handling, food hygiene and then we go onto the Autism awareness training - we do SCIP training which is strategies for crisis, prevention and intervention which teaches someone how to deal with one of our clients when they are feeling very anxious or indeed where they may be loosing control.

VW: This has happened with Naomi and when she was in hospital in our local hospital in the Department of Psychiatry they physically manhandled her to the ground - and gave her massive bruises to her face and shoulders - and the consultant was not best pleased. Where as here I know from personal experience that the staff have been able to reduce the situation, avert it through the specialized training that the staff have done here.

DO'D: Absolutely.

VW: I have been very impressed.

DO'D: We do not use control and restraint - the only time that we would use physical restraint is if someone was going to hurt themselves or another person - we redirect the clients away for the area. If we need to get other clients out of the sitting room if the incidence is happening there, then we would ask them to leave until the person is calm and we would know the strategies we use for that person and build particular strategies for each individual so that we can avoid such situations. A lot of strategies are built around programmes for the client that helps them manage their own autism. We use picture exchange, widget for pictures for clients so that they've got timetables and know what's happening during the day. If they're going home in two weeks they've got it on the calendar and know when they are going home. If they are going swimming at ten o'clock in the morning ten past is no good because they get anxious. We stick rigidly to the programmes. Each client has two key workers so that if one of them is on duty and the other is off there is someone here all the time for them. Communication is the essence of our services and of course we are directed by the key people who are the psychology department. They are the key to our service user programme and everything is centred around the client. It works that way. It doesn't work otherwise, hence when we have people coming from other establishments that have failed them because the staff do not understand Autism and don't understand the challenge. Because they don't understand the communication deficit it compounds the difficulties. Somebody who is noise sensitive - why would you put them in a house with someone who is noisy with the radio on all the time or screams all the time? We have had many people from those situations.

VW: When Naomi came here she was on four psychotropic drugs and thyroxine and her body was being devastated by these drugs, I think it took approximately six months to a year to bring her right down from those four which were interacting with each other and gave her bad side effects to just one small one. She is doing phenomenally well now, but I remember that she was overdosed on all of them and now manages on just a small dose of thyroxin and one psychotropic drug, but the work that has been done on the mind, body, physical level and spiritual level, she has done phenomenally well - she's done walking, swimming, trampolining, horse riding. All these different exercises help the body rebuild itself.

DO'D: Absolutely - we have a very competent psychiatrist on our staff who meets all the clients on an individual basis which involves all the family in the treatments of the clients, with discussions around medication programmes. We do have a very holistic package which is important and a programme of things for the clinets benefit like using the beautiful countryside - nice long walks particularly when the people first come here, because their anxiety levels are particularly high. They don't know us we and don't know them or what to expect of each other. We do lots of physical activities with plenty of good food - taking particular care over clients diets as some of them are on gluten free diet. We expect to be able to cater for all their dietary needs - so it is with a very holistic approach that we take their welfare which is what you give with your testimony of your daughter

VW:! (laughter) I know Naomi has changed because as a child and a teenager I tried to teach her knitting and low and behold a couple of years ago when we came to take her out for the day - there she was knitting and has fabulous tension! What's even funnier is that the carers have the same tension so they have been doing some fantastic stuff! What's more it is very calming to do knitting, and for Naomi it is done so well its just amazing for us in how she has come forward. How she was down in that valley of death as I see it and has bought herself up with the help of all the staff - will we ever get the old Naomi back? No I don't think so but by all the drugs and the crisis she went through back in the ‘90's she is now able to communicate and her sisters are able to come and visit her and take her out for the day and enjoy her company. She enjoys their company as well and I know that when we first came you and Sue Stopa said "you can phone up when ever you want to and how ever many times of the day you want to and talk to us" and dare I say that for the first couple of months I did just that, and then I suddenly realised I could trust you. And that was a huge turning point for me.

DO'D: That's amazing, it's a very good point with Naomi and with all the people who live here. The programmes that they have is not just from 9 - 5 it is a life programme. It's from when she gets up in the morning at 7.30 if that's when she gets up through till 11.00 which may be when she goes to bed - which is completely her choice. It's a life programme and things like the knitting may be a sit down for a couple of hours - or have a go at this and then take it forward to try and improve clients lives at all times. It's not just a couple of hours session. It's important what you say about trust, we have another client who has made use of our services here, and mum was particularly stressed at leaving him. It took a lot of time and her seeing what we were trying to do, and what we are doing - in the last year she informed me that they were moving to Sri Lanka with her husband's business - but she had no problem leaving her son here with us because she had complete faith in what we were doing. She said it would only take her a few hours to get back here if she needed to, and for me that was a real pat on the back.

VW: That's incredible!

DO'D: Would I leave my son at Hollyrood if he was autistic - I can say yes I would because I trust them, but not necessarily other places.

VW: But both my husband and I were ill - David had had a stoke and I had been diagnosed with diabetes which went rapidly wrong from diet controlled onto insulin and Hollyrood saved our lives quite literally.

DO'D: It is a good service and is a service that my family would live in if they had to. They say we don't get it right all the time though we try to.

VW: Talking about the human side as opposed to the drug side. The human side is of the upmost importance because Adults with Autism or anybody with autism don't react to drugs in the same way as "ordinary people" they have a different kind of metabolism that does horrible things with drugs.

DO'D: We believe so, yes. Many years ago the chemical cosh was used all the time, but when people were anxious you gave them a pill and they went to sleep, their quality of life therefore was not brilliant - don't get me wrong we are guided by the psychologists' and our GP's that we need medication and then we use it. But we don't reach for the bottle as the first alternative. We look at many things that can cause the anxiousness, Why? Are they ill or has somebody not followed their programme. Has something gone wrong or is something in their room not as it should be? Chemicals and drugs have a place but it is not the first thing that we reach for and is very important for everybody to realise that.

VW: Because Naomi is on just a little bit as opposed to the drugs that were interacting with each other.

DO'D: Yes just a little bit that maintains her and it works well

VW: How do you see the Autism services going forward given the climate of the day?

DO'D: With the finances as they are, we have a philosophy of providing services from cradle to the grave. We have the residential services, school, outreach services that are developing slowly and we have supported living schemes. I think the outreach and the supported living is the way we will go, particularly as Social Services are very strapped for cash and don't like to pay for services. Saying that, there is a great need for young people to have residential services - maybe not for ever though.

VW: But how? With supported services how are they going to get the same amount of imput? Especially if being supported by someone means them coming in for just 20 minutes a day!

DO'D: That's a very good point. We had a young man who came to Hollyrood eight or nine years ago who was very challenging and after about five years he moved to a supported living team in New Milton where he is living on his own. This is quite incredible considering the young man and he went from 78 hours per week support down to 25 hours of support and it is working very well. It is down to thorough and proper assessment. But also he is being supported by the people who know him in the supported living scheme. I think where it quite often fails or falls down is where somebody leaves an autism specific service to go back into the community to be cared for or supported by people who don't understand autism and that's when difficulties occur. Now the young man who is living in the flat on his own, we know him and he knows his autism and he has been helped to monitor that and control it and when he did have difficulties he would ring and ask for help. Or we have a program that he knows when people are coming in to support him. So if he has difficulties generally he can wait till then. A proper planned service can wait till then, but you do need the Autism training, the support has got to be there, because for instance if something goes wrong at night and he is on his own he has to have a phone number so that someone can come out and see him. It can work.

VW: But we came in from the other end from the supposed eleven hours a week to 20 minutes a day and then into 24/7 care that ended up as eight hours a day and it wasn't autism specific. It was very detrimental to Naomi's health and care with the police having to be called out to find her several times when she ran away. When she did that it's not only traumatic for the person but also for those who are supposed to be looking after them and its traumatic for the parents but its not just that it is a waste of the police who have to be called out and a waste of their services.

DO'D: Along with a wrong diagnosis comes the wrong treatment, or the wrong medication that is prescribed.

VW: But ours is not an uncommon story.

DO'D: No its not an uncommon story - unfortunately it happens on a regular basis and it still is happening today. But when people come into autism services they are specific services with the emphasis on the person. It took a good two years to find Naomi and a good further six months to find the real her because she had been through the mill, wrong services, wrong diagnosis, wrong treatment therefore it took a long time to what you say is now the Naomi she nearly was.

VW: And she's done so much like playing jazz on the piano next to your office.

DO'D: Absolutely, but then she emerged.

VW: She did!

DO'D: She emerged from this horrible cloud of mental illness because of this wrong diagnosis and that's another reason why diagnosis is so important .

VW: So how can the parent's of an adult with autism undiagnosed - how can they help the psychiatrist to come to the right diagnosis, because parents are going to the psychiatrist and saying my child this, my child that, means that 16 and 17 year olds and young adults in their twenties are not being listened to. The mother's are being told that they are being neuritic, and you are this, that and the other as I was called.

DO'D: Somebody gave me a bit of advice sometime ago that probably wouldn't go down to well with the medical services - if you can choose a psychiatrist that is under 50 (laughter) because their training around autism is very much different to what it was if you were over 50 - perhaps that is between you and I! Diagnosis now is much easier with the key to diagnosis being that mum knows their child was not doing this or that or was giving eye contact and then not and so on right up to people with Asperger's Syndrome because they live with the person and diagnosis is far better now - not perfect but it is getting better. Unfortunately it is still expensive, but most GP's will be able to direct you in at least the right direction or to the right person for a diagnosis.

VW: I think the two books that come to mind are Tony Attwood's book on the Complete Guide to Asperger's Syndrome and Freaks Geeks and Asperger's Syndrome which we are now realising a lot of people are reading and are self diagnosing from that title.

DO'D: Yes probably more than 1-100 people being diagnosed with Autism is a hell of a lot, but its much more open now.

VW: It is yes.

DO'D: It is much more spoken about than I can remember when visiting a client many, many years ago when the young man was not allowed out because he was an embarrassment to the family. Because of his behaviour he would do strange things and they never went out - but they didn't have a diagnosis of autism - they had a diagnosis, but I don't think they had a proper diagnosis I just think they kept him inside. Now people will ask for help. I went to South Africa's Cape town and met a family who knew of an autistic boy who was kept locked away which is very common there. It was probably the same here 50 years ago because they didn't want the family or the neighbours to know that there was something wrong with their son. So, they keep them locked away even in Cape Town today and in a lot of places throughout the world. Fortunately in Britain we do talk about it and it is much more common and so it's more likely for people to look for treatment.

VW: We've talked about a lot of the special need side and residential care but at the other end of the scale, what about the high functioning people and the classic autism and Aspergers syndrome which can come with many talents - there are Nobel Prize winners who have Aspergers syndrome as well as mathematicians, engineers, musicians it's not all doom and gloom.

DO'D: Oh no its not - no way it's not - unfortunately people with talents are a very small minority of people who are on the spectrum but they are out there and their talents need to be developed. I think with people who are high functioning the diagnosis is much more difficult - however if support is given it does improve quality of life incredibly so many people that I know have got diagnosis in their 30's and 40's and say I knew there was something. I've known all my life I couldn't mix socially and if I was left alone at work I could do a good job but I couldn't cope with lunchtimes and coffee breaks, but now I know why I can cope with it so much better. Now I have a diagnosis of Aspergers' or Autism my life is so much better I look at things and put them in perspective - I can work things around it - so that I don't put myself in situations where I'm in a big room with lots of people and lots of noise. But if I have to do that then I can gear myself up to it.

We have a man here who was 59 and prior to that he was diagnosed as schizophrenic - he was diagnosed at 59 but went into a mental hospital at nine and had been there ever since - he has come to us and his quality of life is fantastic

VW I bet

DO'D: We know his autism and he obviously came with 50 years of baggage! But his quality of life is now very good. He is now 67 and he will stay with us for as long as he wishes and as he needs to.

VW: And that is as a result of fantastic Residential Autism Care

DO'D: Absolutely he was typical.

VW: Do you think we should be buying more houses for adults with Autism?

DO'D: No - I think what we need to do is educate people. We need more education because with that will come more services. They don't all have to be expensive residential services like Hollyrood but what we need to be doing is opening up and saying yes these people do have autism what are we going to do about them. Where are we going to put the facilities. I have a ten year old daughter and there are children at her school and they are getting help. I know that the trust are looking at putting a teacher or every school being trained in Autism and that is a project that we have got going and which is absolutely fantastic. It's starting them early enough.

VW: To catch them young and then you won't get the Naomi's coming through.

DO'D: That's right, well not as many if we can get in there early and teach the people how to do it, how to treat them and how to work with them. I remember when I went to my daughter's school when she was six and it was set up with the picture system I could not believe it, it was absolutely incredible but there were people with autism in the class and it suited everyone. It wasn't just for the kids with autism but for everyone - they knew what to do and it was absolutely amazing. But for me it was an absolute breath of fresh air, it can happen in main stream education school.

VW: Where does the Disabilities Trust sit with this because they are primarily for residential homes.

DO'D: The autism is primarily from cradle to grave if we possibly can, and that's what we have been doing working at the residential services that we have got at Bedford, Hollyrood(East Sussex) and Essex which are very successful and their developing services. The new service in Essex is set in a park of virtually 18 acres of ground which works for some people - but on the other hand we have Ashley road which is for six people which on the other hand is developing person centred schemes for individuals with autism that, I feel is the way its got to be. Its got to be person centred, a person may need a strict regime in a residential home and services for a number of years but being person centred we are looking to take the person forward into more normative accommodation into their own flat and into work because if we do that they are then contributing to community which is what it is all about for all of us. So it is very much looking at what we do now and what we will do in the future with person centre services but with the support of psychiatrists, psychologists and support workers who know about autism and including the family. We take everybody forward together and its not always easy as you know, because a lot of people have services that have failed them when they come to us and have not trusted and I can totally understand that. But ten years down the road we are trusted and some really good work has been done and many have left the services to a better life

VW: Dick I think we have come to the end. Thank you.

DO'D: My pleasure.