[Speaker 2] (0:04 – 5:18)
Hello, this is Anna Kennedy. We’re talking all things autism and what? It’s been so busy, busy, busy.

I’ve been meeting myself coming around the corner. So we’ve got lots going on and we have just finished a workshop. So we’ve got another one coming up very, very soon.

So if you keep checking the charity website, you’ll be able to see everything that’s going on within the charity. So any training, any workshops, if you need any advice or if you want to send some messages. We’re obviously still looking for talented individuals for Autism’s Got Talent and it’s opened up now ready for next year.

So the closing date will be the end of May and then the show, I can’t believe it, 11 years will have been doing Autism’s Got Talent and that will be happening in October at the Mermaid Theatre once again. We’ve also opened up the nominations for the Autism Hero Awards and one of my speakers today has won two of the Hero Awards. So we’ll talk a little bit about that a little bit later.

So if you’d like to nominate somebody that goes the extra mile, whether they’re a parent, whether they’re a carer, a sibling, a business, a reporter that writes particularly well on Autism, please share. We want to know about them, whether they live in the UK or overseas. We were inundated last year so please send in your nominations and again those will close the first week of June and then obviously we will let all the shortlisted nominees know as soon as possible.

So just wanted to share some good news, I couldn’t believe it. I was in Mayfair in London and I went along with Lisa, my PA who’s been working with me for 12 years now and it’s also her birthday and we won the European Diversity Awards for Charity of the Year. I couldn’t believe it, I hadn’t a speech prepared because I just didn’t think that we were going to win because we were in a room full of people from all over the country of actually sitting next to the Hungarian ambassador and then they called out our name.

It was just like wow, Lisa was trying to take a video as I’m walking up onto the stage and her hands were shaking, she was crying. It was just so lovely and I gave my speech and I got a standing ovation and we got £5,000. Can you believe it?

£5,000 for the charity, much needed funds because as you know at the moment it is so difficult to get funding for charities and sponsors because obviously we’re in a cost of living crisis and that was actually one of the topics of conversation at the event on the table that I was sitting on. They were talking about how difficult it is for their various different businesses, so not only in the UK but overseas as well. So I’m really excited and thank you so much again for us winning.

So I just wanted to share one of our books that had been shown to us by one of my charity ambassadors and champions from a tier to here, Autism A Family’s Journey by Dawn Avery and this book was written originally as a form of therapy. She was struggling with Aston as he was growing, found herself being lost in her poetry. She decided to note down her feelings and thus the book evolved.

Her family had a journey many now experienced. Back then autism was not understood. I often felt alone and confused at the differences we had faced.

I decided to piece the book together. I hope it would give understanding. I wanted to give an insight into the lifestyle of a family living on the autism pathway.

I also wanted to emphasize that although the journey was challenging, I was blessed with meeting so many inspirational people. We would not be who we are today without others in court, without the determination to never give in and without each of us having the compassion to make a difference. We are who we are today because of the life we were given.

I hope this book gets hope and understanding. I hope when anyone meets Aston today and Aston is one of my charity ambassadors who also is a radio presenter on Gateway Radio where we do all things autism and ethics and Aston also have some significant health issues. He’s an amazing young man and I’m so proud to know him and so proud to have him as one of my ambassadors.

I’ve got so many amazing ambassadors who are fantastic autistic role models. So my guest today as I said is not one award winner but two award winners at the Autism Hero Awards and it’s Jane Green. So Jane is currently the first autistic trustee at the Social Care Institute of Excellence, the co-production steering board member and EDI member, policy lead for Time for Autism and BSMS, demon advisor and advisory board member for NIHR arc, long-time trustee at the Care of Support West Sussex and work expert reference group and co-chair.

I could just go on and on and on. Jane is an amazing lady and you’re about to hear all of everything that she’s been doing and talking about exciting projects that she has ahead. So welcome Jane.

Hi, thank you for having me on here today. Oh lovely to hear your voice as well because last time I saw you was at the Hero Awards which was March and all the days were all into one for me.

[Speaker 1] (5:19 – 5:33)
No, it was June and it was imprinted on my mind and it was quite a surprise and I might not have been so vocal. I can’t remember now. It was all a bit of a daze.

I remember you looked lovely as you walked off.

[Speaker 2] (5:33 – 5:52)
Thank you. You’ve got lovely hair as well. The first thing I remember things like how lovely you looked and I love the colour of your hair.

Thank you. So before we talk about autism, before we talk about any of the work that you’ve been doing, who is Jane Green? Where were you born?

What was family like for you?

[Speaker 1] (5:52 – 8:23)
Well, I was born in England but I actually went to about six different schools before the age of 10 in different countries. So we kept being on the move. I’m the youngest of four and so when we came back to England, I pick up accents really quickly by the way, depending who I’ve talked to.

Probably after this I’ll be coming back with a more northern accent for some reason. I didn’t have the building blocks in numeracy or literacy because of this moving around. I was on the east coast of America for a few years, which I love the social aspect actually of it because it’s very active if you like.

But we didn’t have those building blocks and then came back to England and I was bottom-setted and I was considered dim. Yeah and I didn’t do well at school at all but I also was frequently ill by the time I got to secondary school. It wasn’t the best school and in those days I’m quite old, you know, there was no support anyway even if you had a diagnosis.

So I was often ill. I had huge stomach bloating issues and migraines. I didn’t know what.

I just thought I’m making a mountain out of a molehill. I often got infections. I obviously had joint pains and just considered dim.

So at 16 I had two qualifications which were O-levels back in those days and that was it. So that was it really. Yeah affect your confidence growing up.

I think I was sort of in a bubble. I was in a dream. I didn’t know really what I just had to exist and get through things obviously in secondary school.

I was quite tall. I stood out quite a lot but I didn’t always get on with the other girls. I tried to at times but I seemed to get on with the ones who were interesting for me and ran the animal club at the secondary.

I loved the animals there looking after them. And I think that’s quite common. So I am actually diagnosed autistic now but in those days it was we didn’t even have any in the school diagnosed I don’t think.

[Speaker 2] (8:23 – 8:26)
How old were you when you were diagnosed? You don’t mind me asking?

[Speaker 1] (8:26 – 10:23)
No not at all. It wasn’t a surprise to me. I was 54.

So that was quite a lot older. And I think really I was very much existing in a bubble just letting you know like a river. You see a meandering river.

You see a twig going along bumping it into the corners as it goes around bends and underneath and over. That was a bit like me just trying to get through but I didn’t really understand it. And I think that makes you quite vulnerable.

And then I got married. I had two children. Sadly my eldest had a difficult birth and was very ill and a lot of medical issues which sort of hid the the neurodevelopmental issues.

So they were diagnosed autistic ADHD dyspraxic under learning disability at age two and a half. And my second child was also ill with huge allergies and eczema. So that took a lot of time doing the medical bits.

And then there was really no support at all for my autistic child and I wanted to know more about it because I only knew about the rain man. And again there was very little support. So we kept being excluded from primary school.

Well even nursery school. We kept being excluded all the time. And it was like that you get that refrigerator mother you know.

You get the blame which I’ve got used to over the years. But I just thought that was unfair and I wanted to do better and I wanted to be an educational psychologist. So I decided despite not having written anything really for 20 years I would do a degree in psychology.

[Speaker 2] (10:24 – 10:55)
I’ve spoken to so many adults now diagnosed later just speaking to a lady last week actually she was aged 48 and now what I asked her as well is do you think the more articulate you are the less likely you are to receive a diagnosis. And then I’ve also spoken to women and men where they’ve been to visit their GP you know later in life and they’ll say oh do you want a diagnosis now for you know you’ve got through this bar at age 50 or whatever age maybe. Why do you want to go for a diagnosis.

[Speaker 1] (10:56 – 12:21)
Yes I do. They call it masking. I didn’t mask.

I knew I was different. I knew I was autistic. I just wasn’t allowed to be.

And I think it’s a stereotypical view. The very male you know male research male gender bias that’s gone through. So to be autistic you had to have that very non-empathic mind.

And I was told because I became the lead for autism for the National Autistic Society and so on I was told I couldn’t possibly be autistic because I was a professional. I had children and I didn’t have blue hair. I mean that was one person’s view.

I think what they were saying is I didn’t look autistic. You know I wasn’t presenting in the way they expected me to present if I was autistic because that’s the view that’s come across on media in the press. And you know obviously I am empathic.

I love social activities at times. I love music and art and things like that as well. So I obviously didn’t fit the mould and that’s why I couldn’t get a diagnosis when I was younger.

And therefore I didn’t get the support that I needed in my career.

[Speaker 2] (12:21 – 12:38)
So what was the process like for you going through a diagnosis? Because I like to ask this because obviously everybody’s experience is different and also we have listeners in that were thinking oh you know I might be on the spectrum but I’m not quite sure if I want to go through the process. So what was it like for you?

[Speaker 1] (12:38 – 14:31)
Well I knew I was so I think that’s slightly different. And because I was a professional I think I also knew the process quite well and I went out of my county to get it because I didn’t want to influence anyone. And I just felt that I might be lying.

I was very worried about that part but it was it was very straightforward. I was lucky because there was a cancellation and 2016 I actually had it within about three months which is unheard of now. And for me it was slightly different because I’m older so I didn’t have someone who knew me when they were younger because you often have to have that.

And also the fact that I knew exactly what they were asking for but nevertheless it’s quite tiring doing the assessment you know talking about it. But even when I had it I thought are they lying to me? You know because I’ve lived this double life of being an autism professional and working with autistic people but not allowed to be autistic but also not fitting in with neurotypicals.

So it’s I’ve been in the I don’t know what zone do you call that? I don’t know so that’s been my life and it was discombobulating for me which is my favorite word. And it took me a little while even though I knew I was autistic to accept I was autistic and I went round for about three weeks telling everybody in the street in the shops you know I was buying I don’t know some bread or something do you want do you want your change or do you want this?

And but I think you have to work through that for a little bit and then it calms down.

[Speaker 2] (14:31 – 14:37)
So did you tell your family and how did they deal with it like for example maybe your partner or your parents or your siblings?

[Speaker 1] (14:38 – 15:47)
Well I’ve got an older parent now quite old and I don’t think it’s really relevant although I do appear in the press and radio obviously talking about it so I think it’s quite obvious and yes gradually I’ve had some bad experiences I have to say because I sit on a lot of boards and trusts and usually it hasn’t been so well it’s suddenly people move away from me. I don’t go out with a badge I don’t need that I am quite comfortable with who I am what I do but with my charity for example and the leaflets they wonder why autism is on there or neurodivergence and I explained they said well I haven’t met anyone I said well you’re talking to one now and this was a very professional meeting and next minute this chap had disappeared it was like I was contagious and yeah so you do get some of my friends I suppose aren’t friends and they couldn’t handle it.

[Speaker 2] (15:48 – 15:58)
That’s the thing I can’t get my head around you haven’t changed you’ve remained the same so it just means you’ve got a label so what’s the difference I don’t get it?

[Speaker 1] (15:59 – 16:30)
I don’t know I suppose I’m a bit more I don’t want to talk about it all the time I mean I think people are people and we all have different well we all neurodiverse we all are in the world we’re all different and I think I like to live and socialize with different people at different times so I don’t understand that but I suppose it’s fear.

[Speaker 2] (16:30 – 16:37)
Yeah can I just ask you one question about diagnosis and I’ll drop it would you wish that you were diagnosed younger?

[Speaker 1] (16:38 – 18:54)
It’s a very good question I have thought about it and I’ve discussed it with some older people that I know even professionals we think it’s a double edged sword yes obviously some of the trauma I’ve experienced personally for not being believed physically as well and having that support I know my career I was at the top of where I could get to with what I did studying so late but I could have done a lot more so I think for that reason yes and having more support like you can get access to work now and things like that but I also think and this came across is sometimes we’ve developed our own systems to cope and adapt and if it had been given to us I don’t mean given to us but given too much and not made our own way I don’t think that’s good either because you can become dependent and I’m very careful when I say that but I think for me that might you know that that might have been the case so I don’t know you don’t know what you don’t know good question though.

Okay so let’s talk about SEDS Connective what is that and what’s the symptomatic hypermobility, Ehrlich-Danlos syndromes, no one can pronounce that, hypermobility newer divergence which is autism, ADHD, dysbraxia, Tourette syndrome also includes a wide much wider variety but those are the ones we identify along with dyscalculia and dysgraphia and so on and in Sussex but actually we are worldwide now we’ve grown considerably after starting in 2018 as a little voluntary group it seems to people understand why why we’re here and it’s about our connective tissue so everybody has connective tissue you’ve heard of collagen you know people like collagen because it makes their skin I don’t know what but a bit more how can I say

[Speaker 2] (18:54 – 18:58)
people take collagen older women don’t know because they want to try and remain young

[Speaker 1] (18:59 – 23:28)
well I need to tell these women that it won’t make any difference because it can’t wait yeah I’m sorry to all these people selling collagen now it’s the way your body synthesized the collagen so mine um I get told I have very um young skin and it’s is because the protein is different uh that’s the only bonus I’ve got with this connective tissue disorder but um the the connective tissues throughout our body it connects to the ligaments the tendons around our organs like the heart the autonomic nervous system which controls things we don’t think about like breathing and digestion and sleeping and and also uh connects to our brain so um things like there’s a place in the brain called the amygdala and and and the bowels and bladder and it’s all connected this connective tissue and what has been found is um neurodivergent people are two times more likely to be joint hypermobile although that doesn’t mean just joints that means the whole whole body head system all the connective tissue and therefore experience much more pain two times more likely than the general population and also experience much more dizziness so that’s um the the oxygen doesn’t go to the brain because of poor um venus and uh blood pressure and so you feel faint and dizzy quite a lot and sweaty and hot and heart palpitations okay I could go on and on about these symptoms uh you get migraines we have differences with anesthetics we have a lot of allergies um we all get diagnoses or fibromyalgia chronic fatigue is huge and also um sorry I’ve said allergies uh stomach pains basically yeah so that’s what we’re here for and and because of this and because of what I’d seen in my career working with children so I’d worked in special um epilepsy autism schools and they were all on special diets and all this and that and I didn’t really understand it but for my own child and looking at all these other children because I used to go in a lot of schools I would see the laxity the difficulty holding a pen or pencil um the discrimination sometimes and and and and what we call fidgeting for ADHD boys because I mainly had cases of boys um this is all key part of uh hypermobility and and it’s really really interesting but I didn’t have a word for it I didn’t know about it then I just said because I had teams of occupational therapists and salt uh speech language people I said have you noticed how sort of floppy these children are you know they and at the same time I would be flopping over a table myself and they’d be looking at my joints as well uh because I had a lot of health issues and um and but they didn’t they didn’t seem curious about it and it wasn’t until I actually had to medically retire in 2015 I got my diagnosis of earliest animals and um and then I was discharged completely because there’s no pathway and I was actually very ill uh I had to leave my career finally I just couldn’t there was no support for me because I didn’t have a diagnosis before I couldn’t get the doctor to say I needed special support so I had to travel still and do stuff and I was very very ill for two years I nearly died and um it was it was horrible and I I couldn’t eat um I it was very just just the pain I couldn’t breathe um I was bed bound it was very difficult times and I really didn’t know what was happening and and when you have all these things happening to you out of the blue it’s the scariest place to be and my children can you say that you must have been scared I was scared but what really hurt me was when one of my children said mum are you dying and I didn’t know what to say that was awful so what is there any

[Speaker 2] (23:28 – 23:34)
treatment for air loss down loss sorry excuse me um a syndrome no you’re saying it really well I

[Speaker 1] (23:34 – 26:34)
know it’s tricky that’s why I say symptomatic hypermobility um there’s also hypermobility spectrum disorders I must say it’s very complicated why they’ve got different diagnoses there’s no cure uh sadly um there’s any management and support so I was discharged straight away and I thought that was wrong but I was so ill I didn’t you know I just thought that was and I tried joining uh large charities that were out there and um I realized it wasn’t enough I volunteer I did as much as I could but I thought I know what we need and I know there’ll be other people like me out there and so I decided we needed to raise funds locally to get the specialized support that we need because we’ve lost everything we lose our health some people die it’s life limiting and you know autistic people are 16 times more likely to die than the general population and as for disability and illness we don’t have the statistics so it is a real thing and luckily I am working with um Health Education England and so on on these issues but um so mainly affects girls and women we do have boys and men but mainly affects girls women non-binary more because of the hormones at a secondary age so we know between 50 and 50 it’s more symptomatic of hypermobility but sadly if you’re not supported or managed by the time you get older menopause and so on you could be in a very difficult position and usually we’re disabled chronically ill um and of course we’ve been carers because it’s heritable and um we’ve lost our jobs we’ve lost our finance we’ve lost our social mobility we’ve lost our you know any activity or joy that we used to have um and belief no one believes us I was called a hypochondriac oh so many years so many years I was told it was all in my head and I remember when I was training um we said oh they get very sensitive if they’re touched and they don’t like this and that and it’s all sensory and it’s all emotional actually it’s physical same with eating um they’re very fussy about what they yes there is you can get uh offered and and sensory eating issues I I’ve been through that with my elders but keenly if there’s pain when you’re eating you’re not going to want to eat but you might not be able to articulate that I was actually mute as a teenager I didn’t talk you wouldn’t believe it now I know um so I couldn’t articulate this I didn’t know what was happening I just knew I was in pain and if I’d eat something I’d suddenly look about nine months pregnant because of the bloating but I didn’t know what

[Speaker 2] (26:34 – 26:51)
it was I was just thinking because my son at nighttime his tummy just blew up so much at night um Angela we’re trying to sort of get to the bottom of it with him at the moment they can’t find out so well I’m pricking my ears up we just chatted to me yeah no so it’s very very

[Speaker 1] (26:51 – 28:15)
common with our members um because of our allergies so when I say allergies I don’t just mean um food allergies I mean it’s it it’s in a way it’s food related but it’s actually one you can’t test it’s called mast cell activation and people with hypermobility symptomatic hypermobility react we have histamine high levels of histamine in our body and it reacts to certain foods and certain types of foods and and the environment and the situation of stress and um that’s why I got so and had anaphylactic attacks and ended up in hospital um so and again you can die from it and and and some people are more severe it can go in flares um and you can be really limited in food but very often I find it is labeled IBS yeah in fact it’s it’s a mast cell and and there are ways to go around that to help but it’s very painful I mean mine’s been getting worse lately actually um so I have to be careful how much stress stressful situations I take on for that but sometimes I was just allergic to the actual food itself I just couldn’t tolerate it and I’d be basically throwing up and that’s why I promised process of elimination to help you get through

[Speaker 2] (28:15 – 28:21)
your day to day to find out what works best for you um what you’re not not always with food

[Speaker 1] (28:21 – 29:08)
because you’ll end up with just eating two foods and that’s too restrictive you have to always open it up more I would definitely see a dietitian who knows about these issues um and and talk to us basically uh because it is complex and that’s why doctors aren’t trained in this you know I had to buy a book for my doctor and I’d lost my job I had no no money coming in um I bought a book for my doctor because I’d trained them but you know there was there was nothing there and and that’s why it’s so important that they realize that all these things are actually connected it’s complex but I think it’s fascinating so um so what so somebody listening

[Speaker 2] (29:08 – 29:13)
in what would be the first signs if they um they thought that they may have this condition

[Speaker 1] (29:15 – 32:48)
um as children we’re naturally bendy you know you see the you see the young child with their feet over their head so yeah that that’s a natural situation for a child to be hypermobile it doesn’t mean you have a problem if you’re hypermobile and some people don’t but I think if you have a so for a child um I wrote the hyper mobility school toolkit for the uh a large charity for UK and I’ve just taken it abroad in Europe I think um the first thing we’d see is uh usually bowel and bladder issues um either too much or too little just being brief about that um stomach issues rejecting food or vomiting reflux they might not be able to say they’re in pain they often have so eczema um although eczema is identified as a key thing look at it I I was on the nice guidance for um a testing for um an allergy uh sort of test I’ll explain it like that and one thing that came across is um if you’ve got a child with eczema or pseudo asthma you know look out there because they might be prone to more things yeah that’s another thing Angela’s got eczema yeah okay fuel on bell so dear um and um nobody’s good uh I think awareness and knowledge and then hopefully better practice will be good I think um headaches uh gosh I suffered so much from headaches and migraines and no one believed me I was in so much pain um and then sorry going back to children so they might get brain fog so what I found being a teacher is um you would have a very academic child for example and suddenly they can’t do the most basic thing it might be brain fog because the oxygen isn’t getting to the brain so lying down works but as they sit up they can feel really faint and then when they stand up it gets even worse and and that’s what we find particularly at teenage years um so that’s generally what we find with children and then the eating issues they just are some of them have to be tube fed they literally they might have gastroparesis which is a paralysis of the stomach nerve muscles sometimes it’s something else sometimes it’s lack um the reflexes are lack so you get reflux heartburn things like that swallowing issues are key um so everything’s a bit floppy or lax and that will have an impact on things so hearing eyesight often we get astigmatism it acts on everything then the whole yeah because it’s throughout the body it is throughout the body and why is linked to newer divergence is a very good question um and and that’s why we’re here uh as as a charity because i would say that nearly all our members have newer divergent children and or newer divergent themselves but they might not have a diagnosis or might not know it um uh we do have boys and men and and and generally by the time they’re men if they’re still symptomatic they’re quite severe as

[Speaker 2] (32:48 – 33:11)
well okay i was thinking actually with um obviously all these issues that it presents itself with how how was it for you when we were in lockdown and covid did you react to be a little bit more more presume you would have to be more careful but you you know didn’t catch anything you didn’t get covered because i could imagine it would really impact on your body well actually

[Speaker 1] (33:11 – 34:28)
no um number one from an autistic point of view i was i was quite happy um i was one of those that was happy uh not having to go out to all these meetings all the time right i thought and number two it made me less tired because i get i can get very tired it means i have to plan when i go out very carefully also i i’m often injured um i have you know they were going to break my leg in three i was going to be the first patient my doctor said with um bionic knees hips and shoulders and i’ve avoided all that luckily so far i think um i have to wear special feet things orthotics and and things like that and everything closed down all the outpatient appointments i have a lot of heart uh checkups and and other outpatient appointments and then also from my eldest and like everybody else this was a key but as for covid being more susceptible we were not unless we had a much rarer type so we were not affected by that as such but more in an indirect way and and the issue with um particularly inflammation and teeth right

[Speaker 2] (34:29 – 34:35)
so if people um want to find out a little bit more about your charity where can they find you

[Speaker 1] (34:36 – 35:06)
uh we have a website um seds connective um which i can write down ds connective.org yes and is that capital s s no no just all lowercase and we seds connective on twitter and uh oh gosh um someone looks after my instagram for me which is lovely same same title and i can be found on twitter as well at jg jane green well um jane’s

[Speaker 2] (35:06 – 35:24)
going to be writing an article as well so you’ll be able to find some of the links on the charity website so if you check out the charity website just to remind you www.anna kennedy online.com so can i just ask why haven’t we known about this before and how long has this condition

[Speaker 1] (35:24 – 38:44)
um been recognized for oh lovely question thank you Hippocrates 400 BC first mentioned this laxity um in the brain in the bones and joints of people and um over the centuries there had been comments in 1908 and 1912 Dr. Ehrless and Dr. Danlos both both produced papers at conferences so it’s been known about for a while but if you think about it historically when you see girls fainting you know on dramas and things like that and they look very pale and weak i just think we’ve known about it for years we just call women frail and weak um and i think because it’s complex and also because we might be different in the way we express it or you know we don’t know what’s normal i thought that was normal being in pain all the time i i didn’t know and and therefore i just didn’t feel valued in what i felt i just felt that’s why i was in a bit of a meandering place because i thought well what i’m feeling is i’m being told it’s not real um and i i see that with our children and i i just worry about that because if you put approaches in and models in that are all mental or emotional or sensory without considering that we joined up physically it’s not going to work um so i think that’s part of it and also the research until recently was male dominated male bias spectrum bias and um the theory of mind for example that we are systemizers and that we’re not empathic sort of meant that we we had no no support um in 2016 a swedish research team did a very big population study in sweden they they take uh they have a registry of all lots and lots of people so they can do and it was 7.4 more likely uh the the association between illness and loss and autism and then with our patron dr echols uh in fact just this year they have uh worked out is more than 50 percent more than two times likely to be neurodivergent and joint hypermobile and therefore experience more pain and we’ve got oh this is really exciting so possibly too late but you can see it on our website we will have the recording um we’re doing a webinar with dr echols and um dr quote and they have a new paper out on children and young people chronic fatigue and inflammation and i have also we’ve um with another researcher we’ve submitted a manuscript on this education social care and health so we’re waiting that’s in i think there’s a special word for that when you’re waiting for publication i’ve forgotten what it is and this all is really really

[Speaker 2] (38:44 – 39:31)
interesting for me so can i also say that can you share any resources that you may have with the charity because we have our resources page and anyone listening in as well that may have some you know fantastic resources that you think will be interesting to our listeners or to the public whether they have autism or whether they have a disability please share it with us on the charity website and we’ll put it on the resources page so oh absolutely yes thank you yes um so what what do you actually do um so what so somebody looking on your website what is it that they what can you do for them so is it can say for example say i’m a parent so you’ve um shared a few um you know a little bit of information i’m thinking i’m wondering if Angela’s got this so so what can you do for me so it turns out i don’t know anything about you and

[Speaker 1] (39:31 – 42:16)
i’m looking on your website yeah um so we actively support people where we can at the moment that’s in Sussex due to funding issues with positive support so that’s specialized um therapy like physio or osteopathy or pilates or particular swimming areas or it could be something else that we identify as we need we we lead by experts by experience we’re all we’re all there on the board down and and steering board so we do that but we also advocate strongly because the professionals didn’t know about us and the as i said i started this because what they were giving us giving me actually did not do me good in fact it harmed me at times and has harmed others so it’s about um education and it’s about working with other people so we advocate strongly in health uh you saw some of the work i’m doing and also education obviously uh so many lose education do badly because they’re ill and i can’t attend every day and then um in social care i’m very passionate about social care because it’s joined up to health i believe i i believe in connections you see and um employment which is key it’s not just about getting employment it’s about staying there i’m going through this right now with my eldest it doesn’t matter what i know or sit on uh i’m going through it right now with my eldest and um and so employment is key and also um transport accessibility because chronically ill you know but fled has issues as well and i’ve been there as well so that’s what we do but basically we try and empower our members to have a say so they get on board and we’re all working together and um we we try to raise funds to do more of it um we we have gone quite large suddenly and we’re getting a lot of uh interest around the world i do a lot of webinars where i can and presentations to large organizations uh we presented at the international network of school attendance in the netherlands in september and autism europe in krakow and we’ve been in australia and the usa and uh another place in belgium uh coming soon what’s the feedback been like

[Speaker 2] (42:16 – 42:23)
and if you had to choose a country where you would like to live where the support would be fantastic

[Speaker 1] (42:23 – 44:20)
is there such a country um well obviously we have the nhs in england if you’re if you had a lot of money obviously you know a country that you could buy it with but i’m very much for social mobility so i would say here okay even in a depression because i think we have the best knowledge the best researchers and we’re the ones leading this so it’s really really exciting time i feel we’re right on the cusp of this and in future years people are going to look back and say didn’t know about this yeah and and and that’s why it’s so exciting but i think i i have to remember that it’s it’s a big jump for people to make i’ve been living this a long time and i’m actually advocating and promoting this a long time but sometimes people just don’t understand how they can possibly be connected or what i’m talking about especially i think some if you’re autistic and you don’t have symptoms particularly if you’re um a man or identify as a man and you don’t have any symptoms it’s difficult to um to understand this uh so it’s an interesting area and um obviously a lot of people identified by the diagnosis they have so for i have a fibromyalgia diagnosis and a chronic fatigue syndrome diagnosis for me they didn’t work they didn’t explain it it’s like this is the big umbrella over everything but for other people that might be what they they they they see it explains everything but the evidence isn’t there and we have the evidence so that’s why it’s so important to have research and i’m also doing some work uh other research in pain and um uh women’s health

[Speaker 2] (44:21 – 44:33)
okay so when you’ve got pain is there such a thing as a tablet or a liquid or something that you can take to help alleviate the pain so it’s not so overwhelming for you i think when

[Speaker 1] (44:33 – 46:08)
it’s an injury like a dislocation or a ruptured um ligament it’s quite painful so that’s quite acute pain so you do need painkillers because being in pain isn’t useful for you your body inflammation you have to manage it um but when you’re in i i wanted to cut off my leg at one point i can’t tell you i i don’t think i’ve got the words to explain how bad it was and now i didn’t like going back too much but um i just dreamt of being able to cut my leg off it was so painful and and i needed look the strong drugs at that time to cope and my body was totally inflamed because when you’re tired and in pain your body’s inflamed and it’s like a circle and then you get the allergies and then you get the everything else and um i i didn’t know how to carry on so i had to have strong drugs at that point but if you didn’t have the drugs you might go to i didn’t know you might take something illegal or you might need some alcohol i don’t know um so it’s knowing what’s happening to you is very important and then working out what works for you i don’t i don’t um prescribe i’m not clinician i i wouldn’t know what people take is up to them um personally i don’t take a lot of drugs uh now because i’ve worked out my own system but there are times where i need a lot of um antihistamines in particular yeah and can i ask

[Speaker 2] (46:09 – 46:26)
i don’t want to be personal but it’s just like if you’re in so much pain sometimes and you’re caring for your um eldest how do you cope what do you get any support or because if you’re in in so much pain in europe you can see your eldest is in pain

[Speaker 1] (46:26 – 48:26)
how how do you support them what what do you do i’m i’m in a much better situation now where my eldest is we’ve facilitated their independence to be more independent but they’ve been very very difficult times i’m not going to lie when i literally couldn’t move and they were young um and my youngest was very hyperactive as well and needed a lot of support and my it was hard because i was also a single parent um from young and and very little money so i’m not going to say it was easy um it was a a matter of existing and and i didn’t do social media back then i only learned social media really in 2016 um so i didn’t know other people had all this and that might have helped to be honest um and peer-to-peer support would have helped but i don’t know how to answer how i did i just did and um it is you do what you do as a carer that’s why i’m so keen on all of us helping each other because we’re all carers in a way and uh we’re looking after others and but you know when i um about three years ago i had a bad couple of injuries so i had a one very large splint over one leg and they were going to plaster me up from the other leg all the way to hip to toe oh yeah and i was very injured and um my eldest really helped me you know uh making tea getting me the cat because my cats are a sort of interest um and and and getting me food the the food was quite formulaic uh after four days but i couldn’t move so i was quite grateful and um i i thought that was very sweet in making sure i had uh something to watch and things like that so you know they’re very caring yeah good point that’s great yeah so how how could

[Speaker 2] (48:26 – 48:30)
our listeners get involved so if people want to get involved and want to help you what can they do

[Speaker 1] (48:31 – 50:18)
well the two things i suppose um we’re all voluntary so uh and as you said at the beginning money’s tight obviously but it saves everybody money if we get more support because we cost the nhs an awful lot of money and the social care and education it’s a waste it’s a complete waste so um i think obviously fundraising would be key yeah volunteering you might have with we always welcome volunteers and if you have a passion and an open mind you are more than welcome to join us or your carer we have a facebook group um so you can join us a member on the website as well and then you get access to the recordings and so on which are coming up um and then i suppose just get involved uh see what change happens because i’m very my my whole i did a master’s and my thesis was about transformational change i didn’t know it would be so needed i have to admit it was about back then it was about autism in schools but it’s it’s about transforming change in in different organizations and this is what we’re doing and um if you want to be involved i sit on many boards and we’re doing um possibly new projects neuroscience or health or pain uh or just just representing us and getting the word out would be fantastic and um i’ve also grateful for anyone who volunteers it’s just managing it all which i’m sure you’re aware of is is quite tricky uh in your um article and then obviously we’ll

[Speaker 2] (50:18 – 50:38)
share it on the charity website because you might get somebody read it or someone’s listening in and think oh no i’d like to get more involved in what june’s doing thank you i will um i’m always interested in diagnosis so i’ll ask the question what’s diagnosis like in living for children and for adults and what’s the wait times

[Speaker 1] (50:40 – 53:15)
i recently overlooked the adult autism diagnostic care pathway in west Sussex but i happen to know east Sussex quite well due to brightness Sussex medical school and they’re both the same they are three years um for children it’s very yes it’s about the same obviously cams is overrun uh under understaffed so it’s it’s a long time and um and and i know sitting on the doctor’s practice they they’re saying they’re getting more and more referrals now all the time for adults and uh they’re saying well i’ve just got to wait three years what do i do so i started another group uh as well as you do as you do uh for basically it’s it’s it started off for women and girls and non-binary we do find a lot of people are non-binary or also trans lgbtq plus for some reasons and often missed out so it started off like that and uh basically in my very small area but it’s sort of growing because people just want to join up but i’m not trying to lead that it’s more of a cooperative so we can put things in there people can put things in there to support each other because i know one thing about diagnosis is i was asked you know that we think you’re autistic and and that was it we’ll send you the report and i walked out and they said do you know the other autistic groups you can contact and i did and there was nothing out there for me at all so i had no support and what i could have done with was that peer-to-peer support right then you’ve got a diagnosis do you believe it you know just talking it out so that’s what i’ve been involved in now with government um and i think that that’s really really important that that is offered because we need just as much support the the trauma that some of my members have not been believed to be ill and not being believed to be autistic particularly as older and that’s only going to get older than me i mean i was 54 um but i knew i knew i was it wasn’t such a surprise but i think that trauma if you didn’t know and you’ve had all these various vulnerabilities and life and issues and lost your job i think you might be a bit aggrieved

[Speaker 2] (53:15 – 53:48)
if you like a traumatized yeah um i had an adult i’ve been chatting to him for a while an autistic adult he’s very frustrated and um he keeps asking if i know any advocates for those on the autism community are victims of prejudice and he’s tried everywhere he feels like he’s not being believed and he feels that there’s no true advocacy services for autistic people and he’s just beginning to understand why so many are abused left traumatized and helpless to fight

[Speaker 1] (53:48 – 56:42)
back would you say that was a true statement i think there are i think there are lots of autistic advocates sitting up their own groups from what i’ve seen i don’t connect to them all the time because i’m quite busy right but i i don’t know there is prejudice out there i i’ve even had it i still get it um even from some people that perhaps you know i didn’t realize they were doing it to me um because obviously i come across in a different way at times uh i’m not going to lie um but i’m not i’m not hiding it it’s who i am i think um so there are ones out there it depends if you do social media where you are i think the reason i started what i did is because i couldn’t find it and i knew other people would need it and that social justice thing is a very strong thing in autism i think uh i mean he’s always welcome to contact us and maybe we can signpost depending where he is because i do know other contacts around the world um and and really finding out what your passion is will help you because i think we all need a passion and and way to help but i try and do it in a positive way rather than thinking oh well this happened and it’s never going to i’m never going to get over it i i i just have to carry on um but it’s very hard sometimes to do that because we get rejection sensory rejection from something in the past and it sort of rears its head up later on you know oh that happened to me before and i’m not going there so um that’s quite difficult to handle uh mentally and and the same you know i was disbelieved i was told oh we all get aches and pains at our age and this was when i’d come in taking a day off work as a assistant head teacher i’d taken a day off work to go to this medical appointment and i was told we all get aches and pains at our age and i i couldn’t talk i was mute i couldn’t talk i thought how dare you yeah yeah i’m i’m literally on crutches limping i i’ve got and it’s i had so many issues and i walked away and i i think autistic people will either fight or run away because they’ve had enough and i i just went away and suffered more so um this is why i believe education advocacy in all these areas what i do is so important um and and luckily i’ve got other people doing this now too and um we’ve all we’ve all suffered this sort of medical bias it’s all in your head and i don’t want it to carry on in school or in health

[Speaker 2] (56:42 – 56:53)
yeah so obviously this is a radio station for mental health and well-being and we we advocate for time out and looking after yourself and i know this is a difficult one for you as it has been

[Speaker 1] (56:53 – 58:21)
for me so what do you do to relax if you can um well actually i do like going to the cinema as long as it’s not too noisy right popcorn i have misophonia which is sometimes crackly sweet things going on and it’s not too cold um but i do like going to cinema so recently started going back there after covid which was lovely i like i like meeting um friends when i can and just you know chatting uh maybe in a pub i don’t know um on a warm day it’s lovely with the view even better and um obviously my family and being with my cat and um who i love dearly uh teemo and um he was recently in a magazine which was really funny because i you don’t know this about me but he’s my signature and when i do presentations i always get him in as a learning point and i get him in various bits and pieces like today um but i actually got him in um a very large i better not say the name uh one of the largest weekly magazines in the uk and i’m also managed to get in autism and erless daniel syndrome so that’s good that’s good why not quite famous yeah yeah i heard i think

[Speaker 2] (58:21 – 58:27)
i’ve read somewhere that cats are the most closest in behavior to autistic people um so who knows

[Speaker 1] (58:27 – 59:08)
i don’t know my cat’s like a dog though he’s Siamese so he’s very um uh what’s the word uh he loves interaction and communication he he he gets very upset like a dog if he doesn’t get it and when we got him my my eldest child said i don’t see the point of a cat why are we getting one and um yeah and he they wouldn’t interact with the cat at all my youngest loved him and uh but now oh my goodness my i used to when i was working and so on i used to come home my eldest would say mum you need to talk to the cat he needs interaction and communication and i’m going

[Speaker 2] (59:08 – 59:52)
i’m sure those are my words oh it’s been so lovely talking to you and so interesting and um you’re just an amazing lady from everything that you’ve been through so thank you for coming to talk to me on women’s radio station and please keep me posted on everything that you’re doing as i say we’d like to put you on our resources page on the charity website we probably you probably are up there already because marla looks after the website but i just want to say thank you so much and take care of yourself and i look forward to hearing from you again soon delighted thank you for having me thank you and thank you to everyone for listening in please look after yourselves as i say one day at a time keep going one foot in front of the other um take care thank you everyone bye