[Speaker 1] (0:00 – 6:35)
Hello, this is Anna Kennedy and we’re talking all things autism. We’re live and we’re in Covent Garden and it’s a cold day today. Not as cold as yesterday, but winter is here and I can’t believe it’s December already and it’s the end of a decade as well.

So it will be 2020 next year. How? I just can’t believe it.

Time flies too quickly. We’ve just been putting our decorations up and for families that have got children or adults on the autism spectrum, we’ve had to do it gradually, especially for my son Angelo. We’ve got a little bit of a different Christmas this year because my son Patrick is passionate about dinosaurs.

We’ve got dinosaur Christmas bubbles on our Christmas tree and we’ve got a few dinosaur decorations around the house. So it’s traditional versus dinosaurs. And actually, do you know what?

It’s not too bad. We had a dinosaur led light and figurine, quite a big one. And we’ve discovered that Angelo is finding that difficult because of his nocturnal epilepsy, his eyes start flickering.

So what we did was we put it upstairs on the landing now so everyone’s happy in the house. My guest today is Dave Bedford and Dave has been living 30 years feeling like he didn’t fit in. He finally received a digital hearing aids for his hard of hearing condition.

Thinking about his social difficulties were down to this. He was surprised when he found he was still struggling. Beer a long route.

His son received a diagnosis of an autism spectrum condition. And after reading various reports on areas that he would struggle with, he thought, hang on. So then what happened was that his own diagnosis came along at the age of 40 years old.

So welcome, Dave. Welcome, thank you. So tell me a little bit before we go into your background and diagnosis, can we talk a little bit about who is Dave?

Where were you born, Dave? I was born in Blackburn, Lancashire. I managed to migrate down south eventually, but I was born hard of hearing.

Yeah, my dad had it. Granddad had it. And I always thought that was the reason, if you say, for not kind of fitting in.

And yeah, went through mainstream school all the way there. Went through GCSEs, A-levels, University. Always been quite academic.

And then, yeah, it was just sort of like, follow the money. So like down south, managed to go all the way down to Portsmouth, right on the south coast. And then, yeah, I met my wife in Brettnall, settled down in Wokingham.

So did you have any difficulties at school, if you don’t mind me asking? Yeah, I did. But I kind of, I was lucky in that I always had friends that sort of like looked out for me.

I think looking back from where I am now, I could have easily sort of like gone off the rails or struggled. But I always had friends that had my back, if you would. But because I was quite bright, you know, maths was just made sense to me.

I’ve always, you know, numbers were always fine. And English, so all the sort of like STEM subjects that we call now. Back then, you know, I got high grades, so it was just like, you know, Mum, carry on through.

So it just was an actual progression to go through. But fitting in in one particular group, no, not really. I just kind of flirted on a perimeter of everything, which was kind of a self-defense, if you will.

So you were diagnosed at 40. So why did you think you were autistic? Well, like I say, I was hard of hearing.

And when I got my digital hearing aids, they decided to do genetic testing, to try and find out if they could find out what gene it was that caused the hearing loss, and then they could identify what the likelihood would it be of me passing it to children, we had them. So I had ultrasounds jammed on a full bladder comedy story there. I nearly wet myself in the hospital having that.

And, you know, heart traces and various other things. But they couldn’t say what gene it was. And they just said, look, it’s going to be 50 50.

You’re passing it to your children. So when children came along, it was like, oh, find out. You know, I was like, I really don’t want them to have my hearing loss and the struggles I had.

So my daughter went for the hearing test. She was all fine-sailed through. My son came along and he never kind of really cooperated as such, because the hearing test will sit you down and they try and distract you with a toy.

And then they’ll play a sound and they’ve got these cabinets left and right side of you. And then if they turn their head, then they go, OK, yeah, they’ve seen it. And they’d show him the toy and he’d be focused on the toy and then they’d show him the sound.

And he’d never cooperate. And then we kept coming back and back. And then we got sort of like sent to speech and language therapists and everything else.

And I was coming back to my wife going, I don’t know what they’re getting from or what they want from him. And then eventually it was like, I think we’re going to put him forward for a diagnosis. So we got the diagnosis from my son.

How old was he then? I think he was four when he got his diagnosis. You know, lucky he was really young.

And then it was like, you know, you come out and they say, oh, he’s still the same little boy, you know, and your life’s not going to change. And he is still the same little boy. But your path kind of changes from then.

But all the documentation said, he’ll struggle with this. He’ll struggle with this. Make sure you don’t do this.

Make sure you do this. And I was kind of reading this going, everyone has struggled with this, wouldn’t they? And then looking around at all the experts and thinking, OK, everyone else doesn’t struggle with this.

Oh, hang on a minute. Yeah. And then I went to my doctor and said, I’d like to go for a diagnosis.

Interestingly, his reaction to that was, well, you’ve managed 40 years. What difference will it make? I’ve heard that so many times with adults speaking to them saying, well, you know, why do you want to?

But sometimes, like I’ve shared quite a few times, I spoke to a gentleman that was 73 years old and he said, I don’t want to do anything with it. I just want to know. And he said he just felt like a big weight had been lifted from his shoulders.

He wasn’t going mad. Yeah, that was that was all he wanted. But also, I was like, well, I’ve seen what’s been provided for my son.

[Speaker 2] (6:35 – 6:35)
Yeah.

[Speaker 1] (6:36 – 12:00)
So surely that’s going to be provided for adults. You know, suddenly not. But that was kind of it.

And then, yeah, I just went for it. I think it was about six to nine months I waited from going to see my doctor to get an actual appointment. OK.

So which felt long at the time, but I think it’s now about two years. So what your area is, which area is that? Wokingham, but went to Reading diagnosis is about I think it was about four or maybe six people that actually diagnosed it on the NHS.

OK. Yeah, I’m always interested in diagnosis. I always ask people how long it’s taken.

And there’s been quite a little bit of stuff in the media recently yet again about wait times and how long people have to wait and how families are struggling and how children are struggling at school and the schools not knowing what provision to put in place because they don’t know whether they’ve got a diagnosis of autism or not. So it’s quite frustrating, obviously, for a lot of families. Had you ever heard of autism before?

Yeah, but all the stereotypes, if you would. And, you know, we’ve met people with autism such. I never really never bothered us as such with it.

You know, I know we just I mean, we go to Camp Mohawk now talking to you. Yeah, I’m interested to go and see Camp Mohawk. I’ve heard so many positive things.

So for people who are listening in, what is it? What is Camp Mohawk? It’s a day centre for children with special needs.

So you have children with autism, Down syndrome, various disabilities there. But it’s just all about acceptance. But is it like an after school club?

No, it’s just they operate during the holidays or school holidays. I think it’s from 10 till four. But what I was going with it was we turn up their stuff and I just mingle with people.

We don’t see the disability. Yeah, it’s just a bunch of kids and what have you. So, yeah, so I kind of heard of it beforehand, but didn’t fully appreciate the challenges until my son was diagnosed.

And then, yeah, didn’t realise that I was having the same struggles myself until I saw it in black and white in the reports. And you’re like, oh, my word. Oh, my word.

If you don’t mind me asking, what about your wife? What did she think about you getting the diagnosis? Because I have spoken to quite a few women who are married to men who have just been diagnosed or going through the process.

So I know some of them are listening in. So what was the reaction from your wife and how did she deal with it? She was always supportive.

I guess you’d have to ask her herself. But I mean, I think it’s more me sort of like taking a step back and realising that it’s not the whole world that hates me. And I have to have some kind of tweaks as well myself and stop being so stubborn because, you know, I’d go, oh, I can’t hear.

So I’m not going to go to the situation because I won’t be able to hear. I won’t fit in. And just proper self-defence.

And then once I got the diagnosis, oh, I’m not going there. That’s going to be really difficult. I don’t know the social rules of interaction.

I’m not going there. But you’re not doing yourself any favours by not going there. And then things at home, you know, go, nope, I’m not doing it.

I’m having no part of it. And then, you know, I’d shut down. My wife would be really frustrating.

So I think I’m still probably, you know, I’m still the pedantic person I am. But maybe bite my tongue, maybe 2% more. Were you worried about telling her once you got there?

Was she with you when you got the diagnosis? No, I went on my own. Only because I didn’t know how emotional I was going to get.

I didn’t know how emotional she was going to get. I didn’t know what the process was going to be. I didn’t know if you were allowed to.

So no, it was all myself. And how long ago was that? That was four years ago.

So would you say that you’ve changed the way you live or the way you do things, would you say? Yeah, certainly. So if I can feel a meltdown approaching myself, I will sort of go, look, I just need to shut down.

I need to go away. So little things like that and be able to use the terms. And would you say your wife makes allowances for you now, thinking, oh, that’s why he did that or that’s why?

I think it’s more apparent. There’s still frustrations there, but, you know, we can kind of pick it apart later on. OK.

That was because OK, fine. So we can chat more about that in the second half. So if you would like to be one of my speakers on All Things Autism, please contact me via the charity website, which is www.annakennedyonline.com or you can contact me via social media, which is at Anna Kennedy One. Anna Kennedy Online on Facebook and at Anna Kennedy OBE on Instagram. If you wanted to give us a call on the charity website and you wanted to have a little chat with me, it’s 01895 540187. So Dave will be writing an article which we’ll be sharing on our charity website about his diagnosis of autism and a little bit more information about family life and about AUTI and 40.

[Speaker 2] (12:03 – 12:08)
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[Speaker 1] (12:09 – 13:01)
Hello and welcome to Future Classic Women Awards with me. Hello and welcome to June May is Listening. Hi, this is Anna Kennedy and we’re at Women’s Radio Station supporting women’s wellbeing and we’re talking all things autism.

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Join us on Instagram and Twitter at Women’s Radio Station, that’s Women’s Radio STN or Facebook Women’s Radio Station to keep up to date with all our exciting programmes. Hello, this is Anna Kennedy, we’re talking all things autism. We’re live, we’re in Covent Garden and my guest today is Dave Bedford.

Before we go over to Dave, last week has been such a busy week for me. I actually went to Middlesbrough to visit my family and also to support a charity called Daisy Chain. I’ve been an ambassador for Daisy Chain now for almost six years and they’re based in the North East and three to four times a year I pop into the Resource Centre and the Superstore with my youngest son Angelo and he loves the embedded trampolines that they’ve got within the site, visiting the shop to look at the DVDs and last time we visited I remember he spotted this huge teddy sitting on a chair and normally Angelo doesn’t sort of go towards things that he would like but he just made a beeline for this teddy bear and he wanted that teddy bear so we were dragging it around the shop with us. We like to stop off at the cafe and we had a snack and we chat to the staff there that were on the autism spectrum.

The charity Superstore opened in May 2014 and I couldn’t believe 56,544 bags or boxes of donations are by members of the public which represents an increase of 62% from the previous year. They’ve got 183 volunteers are at the heart of the service and they volunteer 1,689 hours per week which overall gifted hours is a value of £396,746. One of the quotes from the parents visiting Daisy Chain I just like to read it to you so what she’s saying is before coming to Daisy Chain Daniel was trapped at home.

He couldn’t cope with school or leaving the house for any reason. Family life was very hard and we couldn’t see a happy future. During this time here we’ve seen him grow in confidence making friends and realise he can overcome his fears to reach his goals.

He’s taken part in activities ranging from cooking to musical instrument making. Daniel has been supported and encouraged by the staff and I feel that they really care about him and want him to do well. They’re sharing his achievements and the whole family has benefited from Daisy Chain.

All the staff are like friends and we feel extremely lucky to have had this lifeline for Daniel. So if you live in the North East area please check out Daisy Chain or check out their charity website. They’ve got all sorts of things going on there.

Such a fantastic charity. So Dave, thank you again for coming along. No problem.

So what do you want to do with your diagnosis? Now you’ve got it, what main aims do you have? I just want to bridge the gap between the neurotypical world and the autistic world really.

I mean not to get too cheesy but just to live together in harmony if you will. And I think that would make it easier if we could understand each other’s world a bit more. I mean I’ve spent 40 years masking in the neurotypical world so I can kind of know what the neurotypical world’s like but it’s just trying to get people to wear the shoes of an autistic person if you will and see it through our eyes and just kind of understand oh yeah I can see how that might be difficult or why that might be a challenging environment or situation.

And that’s kind of what I’m trying to do with it. So it’s awareness but trying to just get people to see it through the frustrations I’ve had and just try and document them as well. And you know also represent my son and try and navigate him round as well.

What sort of relationship have you got with your son? Because I’ve spoken to some families where they say father and son clash because they’re very alike. How are you with your son?

We understand each other. There’s a certain sort of like, it’s kind of like you know Star Wars the Force with the symbolic relationship with the midi-chlorians or whatever. So we kind of understand each other that way.

But yeah we do clash. A lot of things he does will wind me up and vice versa. But I can kind of see it.

It’s just times when I’ve had a difficult day and my wife’s going just you know look I’ve got to separate you both. She’s got to play referee a lot. But yeah, sadly for my wife I’m the chosen one.

It’s all daddy, daddy, daddy. And a lot of times it will be quite cut into my wife and just go you know where’s daddy when’s daddy coming home blah blah blah blah. So kind of difficult for her that way.

But then if he hurts himself it’s mummy that he wants. So she gets that kind of little slice. But yeah we’re a team together.

And how does he get on with his sister? Have they got a good relationship? She’s brilliant within.

Yeah they’ve got a great relationship. You know sibling rivalry’s there as well. But she’s always been amazing with kids just generally.

She’s kind of like we call her the kid whisperer. They’ve always kind of flocked to her anyway. And yeah she just looks out for him.

We went to her school, a Christmas fair at her school and she was happy walking around with him holding his hands and stuff. He’d always been keen to go to her school but we didn’t know whether it was going to be too overwhelming for him. Whether my daughter would be embarrassed to be sort of like kicked off.

Is she much older than him? Yeah she’s 14, he’s 9. So she’s got teenage years as well, her head of her.

Yeah and I mean it was fine. It was a lot better than we imagined. But they started playing Slade’s Merry Christmas Everybody.

I hate that song. Well we didn’t realise he hated it but in his head that is only played on Christmas day. So he just went…

And that was the only kind of… Yeah that’s my own favourite song for Christmas. There’s something about it I just don’t like.

So on your t-shirt you’ve got Auti at 40 so what’s that all about? Well I wanted to set something up. But as typical autistic sort of like trait I procrastinated over it for a long long while and then when I got my diagnosis I went on a being me course.

So what is that being me course? It literally gets you to come to terms with your diagnosis. Specifically for people on the spectrum?

Yeah, I’ve recently been diagnosed. So there was about 8 of us there and one of the first slides was what terms do you like, what terms do you not like. And there were so many people that just said I do not like the word term Auti.

I’m an autistic person or I’m an autism. Yeah there’s a bit of stuff going on social media and you can’t seem to please everyone. So some people like you to say autistic person, autistic individual, autistic child and some people like you to say person with autism or child with autism.

It’s very difficult, you can’t please everyone. So I try to use both terminologies so it’s hard. So I had this in my head and I was like nearly didn’t start because I thought I’m just going to alienate people with the term Auti to start off with.

And so my first litmus test was saying to my wife look I’ve got this kind of idea. Do you like the sound of Auti at 40? Oh yeah I like that, catchy.

What are you going to do with it? I don’t know. And so I eventually set up Facebook site.

And I think my wife did a promotion for me to start off with by sharing it around. And within a few days I had five people following me. And I was like five people are interested in what I’ve got to say.

And it’s just me just blogging about oh I did this today and I had these frustrations or I did this I would have really found this difficult in the past or I thought it was all to do with my hearing. Now having known it’s to do with autism but I still managed to get through the day hey that’s fantastic. I think the thing is people follow you as well like I have quite a few mums that follow me and it’s so they don’t feel isolated and also to think oh he experiences that or Anna experiences that so I can’t be the only one type of thing.

And then it sort of builds and you can share strategies you can share lots of information, photographs, whatever it is and then it’s almost like this family is created. So how’s it going so far? It’s good I’ve got a little core group of people that like and respond to my posts and you know there’s a mum that helps her understand her son better as a lady and it helps her understand her diagnosis she said you know your words really resonate and then I keep getting told oh you should write a book you know the way you write is good.

And I’m just like well I refer to myself as me and brain because brain is kind of my way of saying how I think and I feel like I’m a kind of passenger to the way the world is to me my brain just sees it that way. I’ve never heard that before. I think it’s just my kind of term but people kind of like that so it just comes across well and a lot of people go yeah I really enjoyed that piece, really enjoyed that and I kind of just pull on a strand and it just all unravels and it comes out.

But I was always told you know you’re too verbose and you need to be more concise whereas I’ve got a medium now I can just write and you know verb on as much as I want without being told. So what’s been the biggest change in your life would you say since the diagnosis? So obviously you’ve got the diagnosis you’ve had to get your head around it.

So what would you say has been the biggest change in the last four years for you? Work. That was my main driving force for getting a diagnosis because it was just always challenging and I always thought there’s something it’s not just a hearing there’s something else there’s other people with hearing problems at work and they’re doing okay.

There’s other people with disabilities. What is it? And then yeah I got the diagnosis and again like I was saying I was expecting older provisions my son had and then I went 18 months just finding there was pretty much nothing out there and then I went back to the lady who diagnosed me she gave me some mentoring sessions and said you need to do this, you need to do this, you need to do that and then now I’ve gone on the National Autistic Society course for people, employees with autism and it’s just made you think okay and it’s just offering that olive branch a bit more and not making things difficult for yourself. So what line of work are you in?

I’m a software tester. Okay and so what type of work is that? Basically a customer will come along and say we want a piece of software, we want it to do X, Y and Z so it’s perfect for me, I just go along if it does X, Y and Z, great.

If it doesn’t I say right, fix it and I can be as pedantic as I like about that and get paid for it. How long have you been doing that? 20 odd years now, 25 years.

So yeah pretty good at it now. Okay and have they accepted your diagnosis at work? I haven’t told everyone, just my manager and HR.

Yeah you don’t have to, it’s obviously just for you to disclose to whoever you feel comfortable with. Okay so again thank you so much. We’re going to continue our chat in the next quarter.

If you’d like to be one of my speakers on All Things Autism please contact me via the charity website www.annakennedyonline.com If you want to follow my posts on social media I’m at Anna Kennedy One on Twitter Anna Kennedy Online on Facebook and Anna Kennedy OBE on Instagram and if you want to follow Dave he’s autie at 40 on Facebook and you can contact him or join the group. Welcome to the Women’s Radio Station supporting women’s wellbeing. Women’s Radio Station is all about diversity from opinions, career, ethnicity, education and most importantly women’s wellbeing.

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For more information on how you can sponsor a show, go to womensradiostation.com Women’s Radio Station supporting women’s wellbeing. Hi, this is Anna Kennedy. We’re talking all things autism.

We’re live, we’re in Covent Garden and it’s really chilly today. My guest today is Dave Bedford. Before I go over to Dave, last week I was with Katie Price and Harvey Price, one of my new ambassadors.

We were in a barber’s and Harvey was getting his hair cut and I was chatting to Katie about how difficult it was to get a haircut for both my boys, even like trying to get new shoes as well. I remember I used to take Patrick to Clark’s and we used to have to wait outside and she used to bring the shoes outside because Patrick wouldn’t go in to try them on. And haircutting, sometimes I used to have to try and do it when Angelo was asleep and sort of trim it the best I could and they had the most dodgy haircuts but it was the best I could do.

Yeah, so again, we are looking for performers for Autism’s Got Talent. The closing date is January the 31st. We’ve got quite a few shows happening next year.

We’re going to be going to Cheshire. We’ve got our main show, which is in June this year. So if you would like to show us your talent, whether you’re a singer, whether you’re a dancer, whether you’re a musician, whether you’re a poet, whatever it is that you would like to showcase your talent, please contact the charity website.

Send in a YouTube link and a short bio to Lisa.Robins at AnnaKennedyOnline.com. All the information is on the charity website under events. We’re also looking for new people to nominate for the Autism Hero Awards, which just finished about three weeks ago.

So we’ve booked it already for November at the Chelsea Harbour Hotel. So if you know people that go the extra mile, it could be a mom, it could be a carer, it could be a professional, it could be a reporter that writes particularly well, or a business. Whoever it is that you feel that goes the extra mile to raise awareness and acceptance for autism, please check out the Autism Hero Awards charity website.

So Dave is here with me today, and we’re chatting about him being diagnosed at 40. And I was just chatting to Dave about, I’ve got a few parents that I’ve been talking to and wives, and if you could give tips to people to help make it a little bit easier in the marriage, what tips would you give that works for you? In marriage.

Yeah. Accepting who I am, and accepting the autism there. But also try not to make it a blocker.

Okay. And trying to open up to my wife.

[Speaker 2] (32:36 – 32:36)
Okay.

[Speaker 1] (32:37 – 35:17)
Because I will keep it to myself, I keep a lot of things to myself, and I still do. And she’s probably listening at home just going, oh, shaking her head. And it’s that, you know, because a lot of the time she’ll say, you know, come on, talk about it, whatever the frustration is.

And I think, I’m not saying everyone should set up a blog like me, but she will find things out the first time when I post about it on there. So there is that kind of avenue. But I’ve always been able to express myself in words, easier than sort of like speak.

Sometimes it’s easy to write things down. I’ve spoken to some adults that find it easy to write it down rather than say it verbally. So that’s another tip.

Well, we use messenger a lot. I do. Mainly because we’ve got two kids.

That’s the only way of communicating. But that kind of works a lot. And yeah, a lot of the time I can’t sort of like express myself verbally.

So, you know, and I’ll be upset about something or upset with something. And then I’ll get to work. I’m not face to face.

And I can tap it into messenger to it. So that’s kind of worked for us. But then that’s always been, I’ve always found email, text, messenger, that stuff.

That’s fine. I’ve got a phone. I don’t make calls on it.

I use it that way. So that’s one way that’s sort of like worked for us. I’ve spoken to a few women that they say that when their husbands used to come home, they used to say, oh, how was work?

And because obviously they’ve been at work and it’s almost trying to socialize, all those pressures that some people find quite difficult. The last thing they want to do is talk about work. So I would say a tip is don’t say how was work.

Just let them come in and just basically just settle down. You know, and I know some adults that just go to sleep because they found it so stressful. I’ve done that before.

They’ve had to socialize. So let them have their nap. And then they’ll speak to you when they feel it’s ready.

And I know it’s difficult and it’s a difficult way of being. But it makes it easier for the couple. Yeah.

Sometimes I’ve said, I’ve just got to go to sleep. You know, and she might have had a hard day as well. So it’s that competition of blah, blah, blah.

You know, I’d like to go to sleep or I’d dare you. But sometimes like, no, I really need to. And it might be all night or it might be just a couple of hours and I come back and I go, I’m fine there.

And also, I think she’s before I come back and I go, oh, I’ve had a difficult day at work. I’ve tried to test this and I’ll be all technical. I don’t understand what you’re on about.

Don’t say anything. I’m being shut down.

[Speaker 2] (35:17 – 35:17)
Yeah.

[Speaker 1] (35:17 – 35:28)
I need to vent. I need to vent at someone. I think she’s a bit more receptive to be venting, even though she still doesn’t understand what I’m on about.

She realizes I’ve got some frustration.

[Speaker 2] (35:29 – 35:29)
I need to come out.

[Speaker 1] (35:30 – 35:59)
And she’ll let that. And she’ll go, okay, didn’t understand any of that. You feel better?

Yeah, I do think. Okay. I know.

I’ve spoken also, and my son does this as well, talking into dictaphones. And it’s just like they talk to the dictaphone about what kind of a day they’ve had or want to share any frustrations. And because they’ve said it and it’s out there and it’s verbal and if they want to listen to it again, they can.

That’s another way that I’ve discovered that some adults on the spectrum that have found it easier to deal with. Well, I found it with the OT at 40.

[Speaker 2] (35:59 – 35:59)
Yeah.

[Speaker 1] (35:59 – 36:04)
I’ll be writing and sometimes I’ll write a post and then I’ve written it all down. I think I’m not posting that.

[Speaker 2] (36:04 – 36:04)
Yeah.

[Speaker 1] (36:05 – 36:59)
It’s not a good representation of that. I’d always say read something before you post it because as you’re writing it, sometimes it doesn’t come across as what you would like it to come across. So let’s talk about something positive.

What’s the best thing about being autistic, would you say? It’s the way my brain sees things differently. Yeah, it’s frustrating as well.

But it’s, you know, I’ll see things that are obvious to me and I’ll go, how can you not see that? And patterns in things. I’m like, you know, that’s why I’m into testing as well because I’m just like, that’s not right, that’s wrong.

And it’s, yeah, I’ve made a career out of it. And, yeah, it’s just taking pleasure in sort of like small things and accepting it. It’s like, yeah, you know, I like trains.

Well, steam trains aren’t regular trains. No, not regular on steam trains.

[Speaker 2] (36:59 – 36:59)
Yeah, yeah.

[Speaker 1] (36:59 – 38:22)
Does the Mallard fastest steam train in the world? I was always kind of attracted to that, but it’s kind of the stigma attract attached to it. Oh, you’re a train spotter.

I’ve known quite a few people. When my kids were younger, they used to love it and used to be a place in Southall. It was called Great Western Railway.

We used to visit there on a Sunday and used to have various different things and people had their train sets out. I used to find it, it’s not something I’d like to do every week, but it was just like my boys were interested in it. We’d sit down, have a cup of tea or a coffee as well in a snack.

And it was something that we did as a family, so, yeah. Well, I mean, when I was younger, the, not the Mallard had the fastest one, so now it just gradually used to come past in January. But in those days we didn’t have the internet, so you couldn’t find out when it was coming back.

Oh, right, okay. So me and my dad would just wait because the train line went past our house. Yeah.

And we’d be freezing, you know, bits off, basically, waiting for this train, thinking, is it going to come today? Yeah. And it was kind of, we do it sort of like every week, ending in January, waiting for this, because it was magnificent when it came past, you know, the breathing thing.

But it was kind of one of the things, didn’t really admit it, and it was just, oh, you’re just saying, oh, yeah, I like trains. I’m like, oh, that’s a bit strange. But it was just accepting that now.

You just mentioned your dad. I’m not sure, did you talk to your dad about being diagnosed or any of your family?

[Speaker 2] (38:22 – 38:24)
No, he’s passed away, sadly. Oh, okay.

[Speaker 1] (38:24 – 39:03)
He’s not with us. I don’t know whether he’d, how receptive he’d be about it. He possibly, because he had the same hearing condition as me.

Okay. And I got my digital hearing aids, and I said, Dad, you’ve got to get digital hearing aids that were sorted out. We’ve got the same condition.

He just saw that as, oh, it’s my fault that you’ve got that hearing condition, and he sort of like blamed himself for that. So I think if I went along going, hey, I’m autistic, you know, it’s usually genetic, he’d go, oh, great, I’ve caused that as well. So I don’t know, I don’t know how we’d get on, but then again, we didn’t talk until computers came along.

And we, once we got emails, then it was great.

[Speaker 2] (39:03 – 39:04)
Oh, that’s interesting.

[Speaker 1] (39:05 – 41:20)
But shortly, sadly, it was only about two years, and then he passed away. Do you wish you’d received your diagnosis sooner? I don’t know as such.

I don’t think I would, because have you heard of the comedy show Red Dwarf? I have. To be fair, I haven’t watched it, but I have heard of it.

There’s a character called Ace Rimmer, and he’s another version of one of the main characters. So one of the main characters is a hologram. He’s very bitter because he’s a hologram.

He’ll never get all the opportunities in life. And then Ace Rimmer comes in, and he’s really cool. And there’s another version of him, and he says, oh, you’ve got all the opportunities.

And Ace Rimmer didn’t get all the opportunities. He was held back for a year at school, and so he’s been fighting back ever since because of that. And I think maybe I’d be different if I got my diagnosis earlier, and I’m a big believer in fate.

I don’t know whether I’d be the same person. But then I look at the provisions my son’s got, and he’s not struggling. And I don’t know, would I be better off for going to a special needs school?

I don’t know. I just think that there’s obviously that some children and adults do really well at mainstream if they’ve got their provision right. And obviously, some children who may be more profoundly affected and got sensory processing difficulties benefit from going to a special educational needs school.

I just think there’s a place for both, in my opinion. So yeah. So with reference to your any tips, I’m just thinking of, because people are always asking me for tips and advice.

Anything that you can think of now you’ve been diagnosed on the spectrum that make life a bit easier for you? Stop procrastinating. Most of it is a battle with myself for not doing things.

And it’s that level of perfection. And it doesn’t have to be perfect. My level, I mean, with hard of hearing, I think people can hear so, so well.

And like I get told by my audiologist, no, everyone would struggle in that. And I’ve got the same perception of neurotypical people. I just think they’re perfect.

And you’re trying to aspire to that.

[Speaker 2] (41:20 – 41:22)
No one’s perfect. No. No one’s perfect.

[Speaker 1] (41:23 – 42:05)
It’s that kind of thing. And it’s like going, no, just get out there. Give it a shot.

OK. Again, if people would like to talk to Dave, he’s Auti at 40 on Facebook. And you can contact him or join his group.

If you want to come along to our autism expo, we’ve got a date now, which is March the 28th. And it’s at Brunel University. It’s £10 for the day.

We’ve got speakers. We have free clinics where people can get advice. You can come along, have a coffee, network, lots of stands there.

So we’re going to be doing our fourth autism expo at Brunel University on March the 28th. And the information, it will be on the autism expo charity website. Welcome to Women’s Radio Station.

[Speaker 2] (42:05 – 42:09)
I’m Sarah Louise Ryan. And welcome to Love Lessons Live on Women’s Radio Station.

[Speaker 1] (42:09 – 43:01)
Hello, and welcome to Future Classic Women Awards with me, Stepania Passamante on Women’s Radio Station. Hello, and welcome to June May is Listening. Hi, this is Anna Kennedy.

And we’re at Women’s Radio Station, supporting women’s wellbeing. And we’re talking all things autism. Women, the possibilities are endless.

That’s what makes us different. Hi, I’m Lauren Mishcon. I’m a birth dealer and mum of three.

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[Speaker 2] (43:02 – 43:11)
My name is Ingrid Marsh, and I host the radical wellbeing show, Supporting Women’s Wellbeing. On my show, I bring you ordinary women, like me and you, who are sharing their unique stories.

[Speaker 1] (43:12 – 43:30)
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[Speaker 1] (44:07 – 48:46)
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Join us on Instagram and Twitter at Women’s Radio Station, that’s Women’s Radio STN or Facebook Women’s Radio Station to keep up to date with all our exciting programmes. Hi, this is Anna Kennedy. We’re talking all things autism.

We’re live. We’re in Covent Garden. We’re in the last quarter of the programme.

Time has flown by. I wanted to say congratulations to one of my charity ambassadors, Aston Avery, and with the support of his parents and a small group of helpers, he’s formed Team Avery Essex and which recently launched a pamper project to reward deserving people with pampering at high-end salon. He’s also a DJ.

He does so many different things to raise awareness and also one of my ambassadors and he’s just become one of the Dimensions Campaigners of the Year for Disability. So we’re so proud of him at Anna Kennedy online. So well done, Aston.

And I bet his mum and dad are so proud of him. They just are so supportive of everything that we do in the charity. So Dave, Christmas is coming.

What is Christmas like at your house? Chaos and quite barmy. I think it’s only maybe a couple of years ago that my son started understanding it all.

You know, one thing you’re supposed to be able to bank on as a parent is you get presents for your kids. They’re going to get excited about unwrapping the presents. They’re going to understand that this big guy comes down the chimney in a suit, but he didn’t really get that.

So for a good sort of like, you know, four or five years, it’d be like the presents under the tree. Not interested in them. The big day had come.

You know, I’ve got my daughter who’s excited. I’m wrapping them all in two minutes. And my son, oh, you know.

And so that was a bit difficult. Like I say, two years ago, he finally got it. So he’s excited about it.

But you’ve got to do it gradually. He will get overwhelmed. And we’ve just got to kind of accept that, got to let him let off steam.

You know, go for a walk or something like that. And accept that he might just find it all too much and just need a meltdown. And it’s just going to kind of happen.

Same with birthdays, whether it’s his or ours, you know, it just sometimes gets too overwhelming for him. And it’s just part and parcel of it all. And just like, okay, fine.

Yeah, I remember Angelo never used to get excited at all till he was like in his late teens. And I always remember sort of, you know, I didn’t do it at the time, but trying to get him excited about the presents that I bought. Obviously Patrick was so, he just loved opening all his presents to see what he’d got.

But with Angelo, there was just nothing at all. There was no reaction. And I remember after everything, you know, sort of we’d opened all the presents.

I remember going in the toilet, having a little cry to myself, because you have this expectation. It’s silly, really, if you think about it, it’s just like one day in the year, but it’s just the buildup to it. But now, you know, he does get excited, but we can’t open all the presents at once.

We have to open them gradually throughout the day. And then maybe it might go on into the next day as well. So it suits him and what works for him.

And it’s not getting upset if he hasn’t got the reaction you’re expecting from opening something, or if he finds the box a bit more exciting than the actual content. But we have got an elf on the shelf. Oh, have you?

And that’s kind of, you know, because instead of it being wam bam one day at Christmas, you know, this… I try not to swear because he arrives. And he’s a bit naughty as our elf.

And he’s just making sure that our elf doesn’t do things too naughty. It kind of plants the idea that Christmas is coming. Yeah, it’s like a buildup.

[Speaker 2] (48:46 – 48:48)
Yeah, I totally get that.

[Speaker 1] (48:48 – 50:37)
It kind of knows that. Can I ask if you don’t mind me? Because obviously there might be some people that are listening in thinking that I might like to get a diagnosis.

Can you talk a little bit about the process and how it was for you? It is draining. It is tiring, but it’s necessary because they are kind of probing areas that make you who you are and sort of like, you know, autism.

And it’s… I found it difficult. I could see where they were coming from with the kind of process they went through.

So for one… Did you go to your GP first? I went to my GP.

That was the first sort of, like, frustration with him saying, well, why do you need it? You know, you’ve gone through 40 years. So I kind of had to fight that and go, well, no, I think it would make sense.

And then, yeah, just kind of waiting. And then… Did you go to the hospital?

It was the same… Well, it was just down the road from when the son got his diagnosis. He’s got the adult sort of, like, version.

And then, yeah, it was one-to-one with a lady. There was a bunch of tests. And what kind of tests?

Well, she had this bag of shapes and she sort of, like, tipped them out. And I remember there were seven of them. And straight away I knew that was going to knock me because I was like, right, they’re not going to be symmetrical.

They’re not going to tessellate. They’re not going to… They need to be six or eight.

And I could see that… I could possibly have gone and masked it and come out of it and still not got the diagnosis. So what did you have to do with the shapes?

She basically put it in a pattern and said, does that annoy you? How would you like that pattern? And I was kind of…

And it’s kind of things that I see in everyday life anyway. I walk down the street and there’ll be tiles and there’ll be one missing or there’ll be a blue one where people should be.

[Speaker 2] (50:37 – 50:38)
That annoys me as well. Yeah.

[Speaker 1] (50:38 – 52:57)
But, you know, it really knocks me. I’m like, why? Why?

And it’s basically… So it’s just an extension of things that annoy you in life in a sort of, like, two-hour… Any questionnaires to fill out?

I think I’d done questionnaires beforehand. It was more verbal as such. The most difficult, stressful thing was having…

She gave me a book with pictures and she said, right, provide the narrative to it. I was like, what? And it just…

That was kind of more difficult. Whereas other people go, oh, I can see… And it was only when you got to the last page of the book where you went, all right, yeah, that makes sense.

Whereas I think you’re the typical people will see what’s coming before you get there. So once you’ve been through the process, then do you get the diagnosis straight away or do you have to wait? She did give me the diagnosis straight away, but I didn’t kind of realise it.

I kind of… I remember coming out thinking, am I? I think she said that with me being hard of hearing.

I think she did. So the letter came and I was still… I think that was the worst thing about it, was having the confidence to go for the diagnosis.

Right. Because I thought, if I go there and she comes back, she said, nope, absolutely fine, Dave. Off you pop.

I’ll be like, all right, what is it then? So that was it. Whereas now looking back, it was like, it was blindingly obvious.

So how did you feel when you got the diagnosis? So did you feel like a rush of blood through your body or did you feel elated or did you feel… I felt elated because I thought, yeah, I’ve got this letter that says, yeah, I’m autistic and I’ll get all this provision that my son gets, but it’s almost as though the world doesn’t realise that autistic children are going to become autistic adults and you’re going to still have the same difficulties in life.

So that was kind of… It was frustrating for 18 months just getting knocked back and basically I got my diagnosis and I got told, oh, go to this group within the council and they will help you out. And this lady basically was just going, oh, yeah, we can do this for you.

We can provide you with this, this and the other. I was like, oh, wow, that is fantastic. So I come back in the second meeting and we can go through all this.

I was like, oh, awesome. Came back second meeting. She opened the file.

She went, oh, oh, your address is there. Oh no, sorry, you’re not in the right post.

[Speaker 2] (52:57 – 52:58)
Oh no.

[Speaker 1] (52:59 – 54:08)
And she literally closed the file and said, off you go. So then I had to go back to my council and go, can I have what I would have got? Well, what were they offering?

I don’t know. Can you go and ask them? So I went to ask them and say, no, I can’t tell you because you’re not in our council.

Oh my word. So that was kind of frustrating. So I went basically through 18 months until I went back to the lady who diagnosed me and said, help.

And she said, look, I’ll do some counselling sessions for you because you’ve literally been turned away. So does counselling work for you? Because I’ve spoken to some adults where counselling doesn’t work for them at all.

They expect them like an instant fix, if you like. It did for me because it was every two weeks she’d say, right, here’s some strategies. Just tweak this.

Just tweak this. And I had this concept of everyone in the bucket. So as a self-defense mechanism, I’d find even littler’s thing to not like someone.

Then I could put them in the dislike bucket and go, no, don’t like you. And she said, you can’t do that. You’ve got to put everyone in a like bucket first.

If they do, you know, some people will do something that warrants them being in the dislike bucket, but let them get there themselves instead of you putting them there by default.

[Speaker 2] (54:08 – 54:09)
That’s interesting.

[Speaker 1] (54:09 – 54:52)
I haven’t heard that one before. It’s just mine. I was just like, because I thought if I can just like them, then I don’t have to talk to them and I don’t have to listen to them.

And I can say, blah, blah, blah. And it wasn’t doing myself any favors, though I thought it was, because I was thinking I don’t have to talk to them, don’t have to listen to them, don’t have to say, do you like, job done. And then I go, no one talks to me, no one listens to me.

And it’s like, yeah. And she said, you’ve got to, you know, you’ve got to meet them halfway somewhere. So obviously you have a stressful life, I would say.

So being diagnosed, going to work, having a family, obviously dealing with the difficulties of your son. So obviously you need to relax somehow. So what is it that you do to help you relax and self-regulate yourself?

I play guitar. Oh, do you?

[Speaker 2] (54:53 – 54:54)
Music, yay.

[Speaker 1] (54:54 – 58:44)
I play guitar and I listen to music. Those are my two big things. So is that electric or acoustic?

Both. So I dream of being, you know, a rock star. But sadly it’s just too hard.

That’s one thing that I’ve not been able to unlock is the theory of music. People explain it to me and I don’t know whether it’s just the way my brain is wired. I don’t get it, I don’t get it.

And the lady that diagnosed me said it’s possible because music is an abstract concept and you’ve got the letters and the words and so, you know, it’s just too kind of much. So what did you learn to play? How old are you?

About sort of like ten, my older brother always played guitar. So quite young then, yeah. So I’ve been playing good for 30 years.

So my older brother always played guitar. Oh, okay. And yeah, it was just always that and then Eddie Van Halen was my guitar hero.

Well, before that it was Richie Sambora. And then I heard Eddie Van Halen and I was like, wow. That’s a guitarist.

So I kind of aspire to be Eddie, but it’s ridiculous. Again, I picked someone too difficult really. I remember on Autumn’s Got Talent two years ago, we had a lady who was 44 years old and she’d only been teaching herself from YouTube how to play the electric guitar for two years.

She was amazing. She got a standing ovation. She thought she was too old to enter Autumn’s Got Talent because she was 44.

I said, no, you’re not too old at all. So when she came along, she didn’t speak English very well, but she played on that stage. She was amazing.

I was so impressed with her. So I think music is a fantastic avenue for people. Singing, music, whatever it is, performing arts, it just helps you with everything.

Social interaction helps you with relaxing. So again, if you want to enter Autumn’s Got Talent, we’re coming to the end of the show now, please message us on www.annakennedyonline.com. Thank you so much, Dave, for coming along and sharing your story with me.

I’m really appreciative and I’m sure a lot of people listening in got a lot out of what you’ve been talking about. Thank you again. Thank you.

And have a good week, everybody, and please contact us if you’d like to be one of my speakers. Welcome to the Women’s Radio Station supporting women’s wellbeing. Women’s Radio Station is all about diversity from opinions, career, ethnicity, education, and most importantly, women’s wellbeing.

We aim to celebrate the individuality of every woman everywhere, providing opportunities and the platform for your voice. Visit our website, www.womensradiostation.com for more information. I’m Tamina Zaman, founder of Empower and Enrich.

When it comes to money, do you clam up or get confused? Do you wish you could save more money or are you hoping you have enough for retirement? You are not alone.

Many women want to be smarter with their cash but just don’t know where to start. At empowerandenrich.org, you will find a host of options to help you take charge of your finances and learn how to put your money to work for you in an easy, affordable way. Get in touch with me at empowerandenrich.org and let’s change your future together. Do you want to be a doula? Would you like to support families through pregnancy, birth and the postnatal period? Do you have qualities of compassion, listening, caring and empowering?

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[Speaker 2] (58:46 – 59:36)
If, like me, you’re a mum juggling far too many balls and dropping most of them, this is definitely the show for you. We’ll examine the highs and lows of motherhood and make sure you laugh out loud as we take on this challenging role together. With spoonfuls of advice, incredible stories, it will be refreshing, honest and funny look at being a mum.

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