Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Autism Acceptance
117 Plays5 days ago
In this episode, for Autism Acceptance Week Kerrie is joined by NEAS CEO John Phillipson, who has led the organisation for more than 20 years. John has played a central role in shaping the charity’s values, expanding its services, and championing the shift from autism awareness to true autism acceptance.
Together, Kerrie and John discuss:
- What autism acceptance means - John reflects on why acceptance is essential and how it influences communities, services, and everyday life for autistic people.
- Current challenges and barriers - Drawing on decades of experience, John talks about the obstacles that still stand in the way of genuine acceptance.
- A vision for the future - John shares his hopes for what the world could look like for autistic people and their families in the years ahead.
- Lessons learned - From societal change to evolving understanding, John looks back on the key insights he has gained throughout his leadership.
This thoughtful conversation offers clarity, perspective, and a renewed call to action for anyone committed to building a more inclusive future.
Recommended
Transcript
Impact of Autistic Individuals on Quality of Life
00:00:09
Speaker
is that we've been able to get much more advice from autistic people themselves and they've really informed the debate over the last few years. It's really helped us to make a lot of adjustments and sometimes very small adjustments make a massive difference to the quality of life for people.
Accessibility and Overcoming Health Disparities
00:00:26
Speaker
The things that troubled me a lot are things like health inequalities. We've got to work a lot harder to ensure that people can access the services they need and get the medical support that the rest of us kind of take for granted.
00:00:41
Speaker
It's the change in attitudes as well, isn't it? That seems to be the key thing that runs through all of it. You can't deliver services unless you understand the person.
Introduction of Kerry Highcock and John Phillipson
00:01:06
Speaker
Hi everyone and welcome to This Is Autism, the podcast from the Northeast Autism Society. My name is Kerry Highcock and I'm the Family Development Manager at the charity. Today we're gonna be talking about autism acceptance with someone who many of you know very well, our Chief Exec, John Phillipson.
00:01:21
Speaker
John has led the Northeast Autism Society for over 20 years and has been instrumental in shaping our values, our services and our commitment to creating a more accepting society for autistic people and their families.
00:01:33
Speaker
His leadership has helped the organization grow significantly and he's been a strong advocate for moving beyond awareness and towards genuine acceptance, inclusion and
From Awareness to Acceptance
00:01:42
Speaker
respect. So John, thank you very much for joining us today. I know you're very, very busy.
00:01:46
Speaker
Thank you very much. That was a really generous welcome. All well deserved. So, John, we're just going to jump straight into it. Autism Acceptance Month is is coming up. But, you know, as we say here at Northeast Autism Society, autism acceptance is is for every every day of the year. and And just with that, I guess, how do you define it? What does autism acceptance mean to you?
00:02:07
Speaker
Well, think for a lot of years, we um we had campaigns that were about raising awareness, autism awareness weeks and et cetera. And i think, you know, the public learned a bit through those campaigns, but really we wanted to move from just having an awareness of autism and neurodivergence to actually making a difference in the way that we deliver our services and the way that we approach our work um so that adjustments were made, um changes were made that made things much more acceptable and accessible to neurodivergent and autistic people. And um one of the great things I think that's happened in the last few years is that we've been able to get much more advice from autistic people themselves. And they've really informed the debate over the last few years. More and more, we've got people working in in universities doing research who are autistic themselves and have lived experience and people who are helping to create policy and communication. co-producing policy documents and advice so it's been a fantastic journey really but i think it's really helped us to make a lot of adjustments and sometimes very small adjustments make a massive difference to the quality of life for people and i think that's been one of the things that's been great about autism acceptance and the more that autistic people share their experiences and the more that they're in universities carrying out research the better informed
00:03:34
Speaker
our work is and I think it's been a real learning curve over the last few years that's been great to be part of. Absolutely, I would totally agree. and So John, what do you, obviously you' beat you've been in the business ah a lot a lot of years now, um what do you, and I'm not going to give your age away there, but what would you see as some of the main challenges and barriers to autism acceptance?
Barriers to Autism Acceptance
00:03:56
Speaker
I think ah one of the big challenges of the moment, and sadly it has been over the years, is people's understanding of autism. And i think that, you know, we see every day of the week, we work here with different individuals, children, young people and adults who really have challenges in life because of um autism and parents, parents,
00:04:20
Speaker
advocates, e etc, really struggle to get the services that they need because people don't understand autism. And I think what we're also seeing at the moment is, you know, there's snake oil salesmen around who are talking about cures for autism and treatments for autism. which takes us back to the days when it was thought of as more of ah and a condition or ah an illness. It was pathologised. And, i you know, really hoped we'd moved on from that. But, you know, we're seeing that from some notable political figures and ah and also some academics, which is really very sad. um But I think that um that is one of the challenges. And what we must not do is um
00:05:01
Speaker
allow the the sort of clouds of confusion that people create to stop children, young people and adults getting the kind of services they need.
Vision for Accessible Services
00:05:10
Speaker
We do see autistic children, adults and young people or all all of the time who who really have challenges that could be removed with the right kind of funding and support. Yeah, absolutely, John. Couldn't couldn't have said it better myself. So obviously, you know, as the CEO here at the charity and drawing on your experience, what would be a vision for the future for autistic people and their families? What would you like to see?
00:05:36
Speaker
We'd like to see services open and available to them that are available to the general population. You'd like to think that, you know, if it's things around leisure, that people can go out and have a really nice day without being judged, without feeling... uncomfortable you with the charity's development and a farm at the minute to make it a visitor center etc and talking to parents what they really want is to go somewhere where they can have a lovely day out where nobody looks at them strangely if their children are making happy noises or if they're pogoing or if they're just you know having a a good time and I was talking to parent a couple of weeks ago about
00:06:15
Speaker
Her adult child adult family member, adult son, who just wanted to play on swings, and just wanted to go to a player park and play on swings. And she felt that the people in there were going to phone the police. So, you know, they looked really strangely. And it was just that it was an adult who wanted to play on her.
00:06:33
Speaker
a lovely swing what's wrong with that so you'd like to think that you know as we move on we're going be more accepting and more understanding and and and these things would be more available and and people would feel more comfortable to use them but the things that trouble me a lot are things like uh health inequalities you know what we've really got to do is make sure that those kinds of services are available I was reading articles recently about breast cancer and how it's a major killer for women and we need to improve breast screening. And then talking to people who are providers of service and people are not aware of whether their service users, people living in their accommodation, e etc.
00:07:13
Speaker
were being screened. And we know that, you know, life expectancy for autistic people is lower. yeah Similarly, if you look at prostate cancer, for example, or autistic cancer, things that we know are a major challenge health-wise for men.
00:07:30
Speaker
Are we doing enough to screen? And then on top of all of that, there's all of the challenges around in
Understanding Unique Needs of Autistic Individuals
00:07:35
Speaker
reception. People not knowing whether they feel pain or where they feel pain or being able to describe it. Issues around communication.
00:07:43
Speaker
We've got to work a lot harder to ensure that people can access the services they need and get the medical support that the rest of us kind of take for granted. Yeah, absolutely, John. I couldn't agree more. And I know as an organisation, we've done a lot of work with you know local hospitals, local A&E departments, local outpatients to try and just change things. And we're often not talking about big changes, are we? It's just little things. Small things. and I think as you just touched on.
00:08:11
Speaker
it's the change in attitudes as well, isn't it? That seems to be the key thing that runs through all of this. Yeah, and there's a great example. and I'll not go into a lot of detail because it would identify the person. But we've got a young man who had a range of health issues.
00:08:24
Speaker
And through a collaboration with The hospital and the the consultants involved were able to help him. He had ah a bit of a sedative to make him feel a bit bit relaxed. The hospital put cones out so that our vehicle could swish in and park. He didn't go in through the main reception area. you When he got into the hospital, he was he was sedated. different...
00:08:49
Speaker
three different Medical professionals came in and carried out the tests and work that they needed to do In this case, it was, you know, his throat was checked because there was concerns about his throat. There was an examination of an eye issue that he had and he had some teeth filled.
00:09:06
Speaker
And at the end of all of that, he went back to where he lived and in even the anaesthetist came back to the residential home just to make sure that he was okay. Now, I think that's an exemplary piece of work, but if he can do it once, it can be replicated time and time again. And we're going to improve the kind of health services that that our service users get and that people can get more generally. But it's not just in health, it's it's everything else, isn't it? It's about housing and people making efforts to get the right kind of housing in the right areas.
00:09:37
Speaker
yeah um Education, social care. Education, social care And even we were doing some work with our um advocates recently and they talking about airports and how difficult it is just to go on holiday, the the challenges that arise from visiting an average airport. So my hope for the future would be that people would plan and listen to the lived experiences of people and see that we adjust how we deliver services to make them much more accessible.
00:10:04
Speaker
Absolutely. Brilliant vision, John. and So you have been with this organization for a long time and I know you you've been in lots of other organizations. You don't have quite a long and varied career and and you've probably seen a lot of changes in society, John, I would imagine over over your career. And I guess this is a really big question. But what are the some of the key lessons that you've learned over the years about, you know, about autism, about acceptance, about social inequalities. Is there anything that really stands out for you? I know this is going to sound really obvious, but often people design services and systems with really good intentions and then um and then they rigidly stick to them and apply them.
00:10:48
Speaker
um One of the things that I've learned over the years, and it and it applies to providing services for autistic people, but it applies to other groups as well. You can't deliver services unless you understand the person.
Personalized and Trustworthy Support Services
00:11:03
Speaker
You start with the person and you get the best understanding of them that you can and what their fears and ambitions are, what you know what motivates them, and then customise or personalise the services around them and and that's the only way I think you're going to get the best of services and we've tried here as you know over years to really look in detail it's for example children in our school and what are the what are the how do they process information what are the things that affect their day what are the things that cause them excitement and and get their interest and what are the things that cause them fear um and you try then to create a program that addresses all of those things so that they come into school happily, they enjoy it, they access the kind of lessons that they need that are pitched in the right kind of way. and
00:11:59
Speaker
And I think only by personalising everything that we do, we get the sort of results that we get here. And i think it would be a lesson for policymakers to really try and get assessment at the heart of what we do, but not...
00:12:14
Speaker
you know, drawn out, resource heavy assessment, just a good enough understanding to provide good services. Yeah. So about the DL then, isn't it, John? I guess you're talking there about really looking into the DL because you could have a textbook understanding of what it means to be autistic from 1943 as an example, but that's not actually going to tell you anything about the person that's sitting right in front of you right now.
00:12:37
Speaker
um It's about that detail. and I think you mentioned before those, interoceptive understanding of how people process their internal body sensations. And and that links a lot to what you said about the health inequalities, I think, because what we've got now is a lot of children, young people and adults that can't identify pain. They can't identify when they're feeling unwell. And therefore we're missing, you know, this is about people's lives. It's about mortality, isn't it? We're missing those cues because we might not understand what interoception as an example means. So It is. It's really, really about the detail. I think that's what what you're saying. What about relationships, John? Are they important?
00:13:12
Speaker
Well, absolutely. Absolutely. I mean, the programme that we have really looks at the detail and tries to understand the person. But then if you're the person providing support, yet the best support you can get from anybody is from somebody that you trust, somebody that...
00:13:28
Speaker
you know, respects you and cares about you and who wants the best for you. And if you know that you can, if you've got that trust in the relationship, um then then, you know, you can make a lot ah lot of progress. But I think people need to know that somebody's got their back, somebody's somebody's there for them and onces their has has their best interest at heart.
00:13:51
Speaker
So I think trust is massively important thing. And that trust only comes from selecting the right people to work in this kind of service and having people stay in the service and learn. And you know when I say learn, you said you could have a book from 30 years it ago equally, you could have a book written this year. And if they don't actually spend the time to to observe and watch and care enough to understand, they're not going to be the right kind of people to provide the support.
00:14:19
Speaker
Absolutely. I think, you know, we've had many discussions over the years, haven't we, about, you know, you can have as many qualifications, as much experience, but if you've got the wrong values and attitudes, then it's never...
00:14:30
Speaker
You know, it's ah it's never going to be meaningful, is it, for for the people that we support? And, you know, we've got to do better. We've got ah we've got a duty to do better for children, young people and adults out there, haven't we? Yeah. And emton every week we look at the incidents and episodes, things that have happened, good things and bad things across the organisation.
00:14:46
Speaker
And one of the things I'm always really amazed by is the extent to which our staff really... look at the detail of somebody's life and understand exactly why something happened in a particular way or understand the things that somebody really likes or the things that calm people in different situations. You're sometimes awestruck by the the extent, you know, the lengths that people have gone to to do that. But that's great. That's what you really do want because it's those details that make such a huge difference.
00:15:16
Speaker
Absolutely. Well, John, thank you so much for joining us today. has been a really wonderful discussion. And, you know, I could speak to you for hours really about this stuff, as we have done in the past. As we have. But again, thank you so much for taking the time to speak to our listeners. Thank you very much.
00:15:31
Speaker
And to all our listeners, thank
Engagement with Northeast Autism Society
00:15:33
Speaker
you so much. If you've got any questions or comments about anything you've heard, please get in touch at info at ne-as.org.uk. You can also follow the Northeast Autism Society on Facebook, Twitter, Instagram or LinkedIn.
00:15:47
Speaker
The podcast This Is Autism comes out each month and you can subscribe on Apple Podcasts, Google or Spotify so you never miss an episode. So bye for now.