There have been calls for more support for those with autism on the Isle of Man.
One resident, who had his own autism support replaced with mental health support, believes he has been let down.
He told Manx Radio the one-hour-a-week support that he received kept him out of Manannan Court in the past - which is much cheaper to provide
Now we're here to talk about the autism strategy and some of the issues faced by the autistic community. In terms of the strategy itself, I know we made quite a bit of headway with the strategy going through Tin World and it's being launched or ready to launch. I can remember the strategy being launched. I think it was sometime in early March and it is available on the government website. There's two forms, there's an easy read form and there's a full form. I tend to use the easy read form because it's easy to point out to think things to people but I would recommend anybody who's got any association with autism either for themselves or somebody they care for actually goes and has a look at the autism strategy on the government website. As someone that is autistic, what do you make of the strategy? The strategy in itself, I think, is very, very good. It seems to cover a lot of the points. I was at one of the launch meetings and the autism strategy oversight group seemed to want to listen to the autistic community and find out what the autistic community really needs from the strategy which I thought was one of the most positive interactions I've ever had. You're a mum and you've got kids with autism? What did you make of the strategy? When they first announced that they would be looking at an autistic strategy and then going through the process and then it coming to the end where it's ready to launch. Reading it, going through that process, how was it for you? I think at the beginning you're always a bit sceptical of people who don't understand my world having opinions or thoughts about my world but if you don't engage with it there's no hope for change and so I went to the strategy meetings and got invited to things and our input was listened to and it was a good year to years that we were talking to people. I was really impressed with the questions that were asked. There were people who understood autism, who lived with people that they love, who have autism and there seemed to be a lot of understanding about the journey that autistic people have to do to live in our society. So I was actually really impressed and by the time we got to launching it I personally felt that we had been heard and the strategy showed that we had been heard. Did you also have similar feelings to that being someone who is autistic, you know the struggles that you've been through? You know, did you feel as though, right, this is people will understand me now? Yes, the strategy seemed to be a serious attempt to make the island more autism friendly. Certain bits of it aren't, certain bits of it aren't. Even the government that owned up and said yes we are not autism friendly in a lot of ways and they made commitments during this strategy to actually address those to make dealing with government to be a much easier process for autistic people. Now you've faced some of those issues, can you tell me about that? Yes, I've been receiving one-to-one autism support from autism initiatives for the last three years. I had a very good support worker who helped me in a lot of very practical ways to deconstruct problems so that we could look for solutions for little bits rather than trying to deal with the whole thing at once. Then a few weeks ago there was a meeting at which I was not invited. I received a phone call saying that my autism initiative support was being withdrawn but without a reason. When you got that call what went through your mind? I was just numb, the my support has kept me out of man-in-court on at least one occasion and you just thought one hour a week, a support is better than 168 hours a week of care. I just I felt lost, I felt no problem. What have you noticed there are some positives but there's still some issues that needs ironing out? Have you noticed anything? I think for me understanding systems you're always going to be ironing out and I was just really impressed that they made such a good starting point where a lot of things had been thoroughly worked out and the hope would be that as we then implement it and work with it bits that need tweaking the people that we spoke to seemed willing to then tweak it so I don't think it could have been more positive although it wasn't perfect. But I understand even though we have the strategy at the moment there's still support that is needed. Oh there's so much support that's needed and it's just not available so for one of my sons who's trying to leave home at the moment there is no support for him to live independently because he doesn't have a social worker, he would be in the learning disability teams, he was unable to access learning in his young years, couldn't attend school, was educated completely at home, his learning was delayed and is improving but because his IQ measurement which I don't doesn't make sense to me is not under 80 he cannot have any support from the learning disability team. I think somebody who has taken five years to learn to sign their name and who hasn't been able to access education, how on earth can people say that he doesn't have a learning disability, how on earth. And for you as a parent it must be difficult because you are I mean you are his carer but you also you know you need that support as well for yourself. Absolutely I mean I find it hard being called a carer you know I love this person who is struggling to access his life and I know the amazing qualities he's got and that he can bring to the world and these they're like false gateways are stopping him and it immuses me how somebody can put a silly gateway there and therefore stop him becoming fully him. He is such an asset to our family, to the people in his community around him and it is beyond me that he can't get the support he needs to just be able to live away from home and build his life. What would you like to see more of or be implemented? What would you like to see? I think for me the biggest thing so I have a variety of children with different needs to have the allocation of someone that they can always access all of their lives because autism has a spiky profile. It isn't about deficit, it's about all the things you can do and then these few little things that you can't do and throughout your life throughout the things that life throws at you so sickness, relationships, having kids, you will go through different experiences where you need somebody to support you to navigate that experience because all of those experiences are designed for neurotypical people. They are not designed with an understanding of neurodiverse people. I think the island does need it needs an autism champion but it also needs to have as part of Manc's care an autism support team. It's all very well to say oh we're getting support through a third offering support to a third party but since the third party writes the contract if they change the rules then Manc's care have no comeback. I don't know but I suspect that what has happened is that that's why my care has been withdrawn. Is it fine if I just go back to the Manc's care we're drawing the support? Is that fine? Yeah. Right so as you were saying you know you've lost just you've lost that support. Any idea why? No because nobody's told me. I basically I emailed my MHKs the head of the health service, the autism strategy oversight committee and MCALLS. I've heard nothing from my MHKs despite the fact that I know they're back from the holidays. Nine days after I sent the email I got an acknowledgement from the executive is this assistant of the head of Manc's care. The autism over, the strategy oversight committee said well it's not really about us and I replied to that well yes it is. It is because you need to know how autism is currently being dealt within the community. MCALLS who are the only people who've really seemed to have taken this seriously have passed it on to the care quality and complaints department to whom I've had one meeting with a representative. At that meeting I found out that six months in the autism strategy which was so paraded with rasmataz when it was launched has not Manc's care have not been asked to implement it. Therefore they are not legally or on a bound to provide the support. There are six principles in the autism strategy and I feel that I am being let down on five of them and because it's just me and there's all these range of experts I feel a bit like Mr Bates versus the post office. And all you're doing is you're asking for that one hour of support that's 60 minutes of support. I have been allocated a mental health support worker but she cannot give me autism support all she can do is give me mental health support and despite what a lot of people think autism is not a mental health condition. No it's a lifelong disability and I hate to say you know use that word but it's the only word that can really express that we do see the world differently. We do react differently. Yeah I think there is a misunderstanding that it is a disability. I mean it is autism is full of abilities. There are aspects where you have to engage with society usually the system side of society. So for instance when you engage with people the people are lovely you know inside Mank's care we had a I had a recent experience where my son needed a CT scan and somebody in the team was very unkind to him. I immediately told the people who run that team they were horrified they immediately did something about it they helped the person get training. I couldn't be more impressed with that response. So when you're dealing with human beings human beings have become really understanding really accepting of autism much more awareness. I think the strategy brought a lot more awareness of autism to people but it's when those people are constrained by a system they you'll be told but we have no legislation that can help you. We can't implement anything because there's there's nothing written in legislation for us. So I think it's a systems problem and if we could if people could talk to me about this system talk to people with autism about the system what could we do to make this more accessible to you. The journey through health care the journey through education the journey through going to work would would be much much easier and there are lots of people on the spectrum who have something enormous to give to our community. Some of which has a commercial value so there'll be be earners bringing taxes into our government and some of which are social and community which is invaluable to our community and yet those people are never set free to be themselves because the systems knock them out before you can get through the door. So just to echo what you've been saying it's not an issue with the people it's not an issue with the strategy itself it's the ruling out of it and making it more accessible to all. Yes and the and the inquiry so people understand some types of autism but not everybody is non-verbal not every you know people are high functioning but they still live with the same constraints the same trying to engage with a society that is not wired to understand them. What's your message to the powers that be the people that would be high up in government that would be listening listening to the interview what would be your message to them? You need to look at your systems and you need to be more kind. You need to know that first an autistic person is a human being and they have feelings and they have potential and they are amazing people but your systems reduce them and that reduction into being a problem or having problems is a bit insulting in this in this age in 2024 to reduce people to what problem are they is just horrid. We don't need to do that on the Isle of Man. The Isle of Man is fundamentally I mean I moved here 13 years ago and the support that I had in Peel from people at the swimming pool in the shops just normal people got to know my family and were kind to my family we need our systems to reflect that kindness. I think there are certainly very very good people who go out of their way to help people with autism. I know of some people who have you know really you know when I was able to work who have gone out of their way to shape an environment where I can work successfully. Unfortunately I've also been in work environments where people seem to have almost taken a delight in making me suffer for having autism. Now that should not be happening. The island is supposed to be supposed to have freedom to flourish. Well it's very hard to flourish if you're being pigeonholed as a certain problem or you're being blocked from employment because you can't cope with interviews. It's very hard to flourish when even a trip to the supermarket could cause you a major meltdown. I would like to mention the sunflower lanyard which I would urge anyone who's autistic to get hold of. That's just a way of highlighting that you have an unseen disability. Bus Vanen are pushing it. I don't know who else is but I would recommend that anybody who goes out into situations where they feel vulnerable and they don't feel they will be fully supported. That they get the lanyard because at least on that you can say I have a disability. I may look normal and I may act normal but I have a disability and something could be a tiny little thing could just turn me from a functioning human being to a crying mess on the floor. I can't tell you what that is. I can't tell you what not to do so you don't trigger me. All that will happen is that something in me will flip and that's it. If I can ask you can tell me if you want to answer it. Do you fear that I mean you've taken I can see you've taken years of hard work you know to get yourself where you are. Do you fear that without that support that you've been asking for you could not go downhill but you know you you could take a knock. I think that without the sport I've had in the last three years I would have been in Manalyn Court at least once and probably more times and that's what worries me about getting mental health support rather than autism specific support. The first principle of the autism strategy is to think about each person and what they need. Well you can't do that if you reduce people to numbers. You have to look at them as an individual somebody who has specific needs and you can only do that by long-term care. You can't do it in the normal mental health support of six to 12 week support. You need it can take that long just to build up trust with somebody. You need to know the person and that person needs to know that the suffering person with autism needs to know and be able to build trust and have a reliable support with proper care plans. For example if I become non-verbal how do I access a telephone system? The mental health support do you want to address that as well? My family have been in and out of the mental health system. We had some exceptional care in camps. Unbelievable kindness. I would say that the route often ended in needing medication and there are other things that maybe could have been done but there wasn't worse. They didn't have the resources to do that. I think moving into adult mental care has been tricky because you never get a consistent psychiatrist. You're always getting locums. Each locum arrives with their opinion about what medication you should be on and they say oh my goodness that tablet is terrible. Don't be on that, be on this. So then you change to that tablet. You do a little journey of nine months to a year. Then another person comes and says well you shouldn't be on that in the community. You need to be on something else. It's people with autism just need the consistency of knowing this is what I'm on. This is what helps me. This is what I'm going to do. And then they want to move on with their lives. If I could just add something about locums, it was actually a locum who diagnosed me. There's no psychiatrist within Mankscare qualified to diagnose autism. I'm not sure that that's true. There are psychiatrists who can diagnose autism. But there is no service here. So there's no funding for neurodiversity. You know some of my kids have got ADHD and they cannot access care. They cannot access medication. We have to pay for that privately hundreds of pounds a month because there is no system for my kids who had were diagnosed as children in adult care. They cannot get medication. That has to be paid for privately. If my people were medicated correctly, their function in society would be enormous. Enormous contribution that they are permanently frustrated but they're not functioning well because they can't access medication. You've got your own experience with autism in the family. What kind of support would you like to see? Not just for yourself but for others who's also going through the same journey as you. Well I think the journey of parenting children who are different to you and learning to understand what is just there beautifully and wonderfully made character and what is a wiring issue. More wisdom for parents who are loving people with autism and a place where you can genuinely talk about it but access help. I don't mean just a support group where you can all sit and say this is really tricky. You want something where people can have the authority to make a solution. Thank you for making it to the end of the Manx Radio Newscast. You are obviously someone with exquisite taste. May I politely suggest you might want to subscribe to this and a wide range of Manx Radio podcasts at your favourite podcast provider so our best bits will magically appear on your smartphone. Thank you. you [MUSIC PLAYING]
