[Speaker 2] (0:00 – 5:07)
Hello, this is Anna Kennedy. We’re talking All Things Autism and I was just thinking how long have I been doing this show now? It must be between two and a half, three years and I’ve had so many interesting and fantastic guests.

I really love chatting All Things Autism on women’s radio, talking about mental health, talking about wellbeing and talking about autism. Before I go over to my guest, Adam Murphy, who’s going to be talking about his son, Ryan. I’d just like to chat a little bit about what’s been going on in the last week since I last spoke to you.

So obviously it’s been Autism Awareness and Acceptance Week and now we’re in the month of Autism Awareness and Acceptance Month in April. And I’ve been chatting to the Metropolitan Police, as is my husband, Sean. So Sean’s been working with Chief Inspector Brown to produce a document designed for people with an autistic spectrum condition to assist them should they be approached by the police who think it’s appropriate to conduct a stop and search.

The document will look at making people aware about stop and search and the different steps that have to be gone through to make the search lawful. A very important part of this work will examine the best approach that should be taken by anyone who has been stopped and will include the benefits of carrying the Autism Alert Card. So during the week, the Metropolitan Police was having training sessions for the Metropolitan Police and they had two autistic officers that spoke about their experiences.

One officer was a retired officer and talked about what would have improved her work. And then the second officer spoke about who’s actually currently working as an officer who’s autistic and talked about what works for her and what doesn’t work for her. I was joined also by Katie Price, who was chatting about Harvey’s law and also about trolling on social media, which seems to be a little bit, I would say, probably on the increase because a lot more people are at home.

A lot of our autistic adults and children are online, so they can be vulnerable or misread situations. So that’s what we were talking about. And then I was talking about living with both my boys and also DCI Dion Brown was talking about his son who’s on the autism spectrum.

Apparently it’s been received well so far, so we’re really pleased about that. Also, we were talking about the petition and we were asking people to sign. It’s still going on.

I still got a long way to go. I think I’ve probably got about eight thousand seven hundred signatures so far. So we’re creeping up slowly.

But if you haven’t signed my petition, I’d really appreciate if you could do that. It’s called Who Will Look After My Sons When I’m No Longer Around. And the link is www.change.org forward slash Anna petition. Just to remind you, www.change.org forward slash Anna petition. I was also on the sister radio station and that was men’s radio. I had one of my charity ambassadors, Ethan Comsey, who had actually written a rap for World Autism and Acceptance Day.

It was amazing. And I’m just so proud of this young man. I’ve watched him in the last four years how he’s flourished.

He won a scholarship for pineapple performing arts. So he also does something that’s called Stomp. And when you see him perform, he just puts everything, every little bit of him inside his performance.

And he is just such a lovely young man. He’s 18 years old. So if you want to check out who my charity champions are, who my ambassadors are and who the patrons are, you can check them out on www.annaKennedyonline.com.

And just to remind you, hopefully, fingers crossed, it looks like we might be coming out of lockdown. And I was hoping that September we’re going to be able to do Autism’s Got Talent The Roadshow at St. Ives. And then we’re going to be doing Autism’s Got Talent and celebrating 10 years.

I can’t believe it’s been 10 years at the Mermaid Theatre. And then just to remind you about the Autism Hero Awards, which will be happening in November. And if you’d like to nominate somebody who you feel that goes the extra mile, please check out the charity website.

There’s 12 different categories. So there’s quite a few for you to choose from. And if you would like to nominate somebody, please do.

And the closing date will be the first week in September. So my guest today is Adam Murphy. And Adam is an unpaid carer for a 24-year-old autistic son who’s called Ryan.

So at the beginning, he was a single dad, just me, he says, and then a four-year-old autistic boy. But for three children in total a couple of years ago, he’s lost over 10 stones, still maintained that weight loss. And recently he was on the BBC talking about the need to prioritize people with learning disabilities for the vaccine.

Hello there, Adam. How are you?

[Speaker 1] (5:08 – 5:10)
Hi, how are you doing? I’m doing really good. Thank you.

[Speaker 2] (5:10 – 5:23)
Oh, thank you, Adam. Thank you for taking time out of your busy day to chat to me on women’s radio station. So for people who are listening in, who is Adam?

Where are you from, Adam?

[Speaker 1] (5:25 – 7:11)
Hi, so I’m from Cheltenham in Gloucestershire, not far from the Cheltenham racecourse. And I guess before Vine was born, I was doing lots of different things work-wise. So I was a machinist.

I worked in the steel industry. My day was about 12, 14 hours long, lots of heavy lifting, lots of heavy work. I worked my way up through various jobs, had a very good job in the end as a press setter.

And then that sort of brings me to when that was going on, Ryan was born. And around that time, we received Ryan’s autism diagnosis. So we would have been about three years old then.

And so Ryan’s about three years old. And around that same time, my relationship broke down. And it was just me and Ryan for a bit.

So Ryan’s a three, nearly four-year-old autistic child. And we sort of went out into the world together, really, I guess you could say. There’s not really another way of saying it.

Just me, him, no money, no house. And we went from there. And he really is the most fantastic young man that you could meet.

And we’ve both been on quite the journey together. We’ve tackled a lot of things along the way. And as much as he’s grown, I’ve grown with him.

And I know people are going to listen to that and think, oh, that’s so cheesy. But it really is. I mean, it really is true.

I wouldn’t be who I was without him. And he helps me as much as I help him.

[Speaker 2] (7:13 – 8:04)
I’ve seen your relationship on social media, because on Twitter, you have a lot of people. Because there’s a lot of mums out there that talk about their sons or their daughters. But there’s not that many dads that actually chat about their relationship.

And there’s a group that I know of that are called Hillingdon Dads. And it’s quite a small group, but they like to go out, not so much now because of what’s been going on with COVID. But they’d like to talk privately.

They go to the pub, have a chat, and then just talk about things that dads like to talk about. And then football and whatever else comes along. But they really love that group.

And it just really helps them get through their week or their month or whatever it is that they’re going through. So can we just go back to the diagnosis? Can I ask you, Adam, had you heard of autism before?

[Speaker 1] (8:06 – 9:02)
No, I didn’t know what the word meant. We weren’t given any leaflets or literature or anything like that. So we had an office to come to the house and she said, your son is…

She must have said it on a previous occasion. She must have raised a suspicion that something was wrong. And then this was the follow-up where she gave her conclusion.

We had no idea what was going on. We were the bento that your son has autism. And that was it.

There wasn’t any follow-up appointments. There wasn’t any groups that you attended, phone calls. There wasn’t any of that.

And somewhere over the years that followed, learning disabilities was added to that diagnosis. But initially it was a diagnosis of autism, and we did not know what that meant.

[Speaker 2] (9:04 – 9:33)
So what did you think that it meant? Because I remember very much like you because my son’s now 31. And at that time, I didn’t know anyone who was autistic.

I’d never met anyone who was autistic. The only thing I knew. And a lot of people say the same thing around 30 odd years ago was the film Rain Man.

That was all that I knew about autism. And I was thinking, is my son going to grow up to be like the character that’s played with Dustin Hoffman? So was that something similar for yourself?

[Speaker 1] (9:34 – 10:04)
No, I mean, in all honesty, I didn’t know what was going to happen. I don’t remember feeling particularly scared about the future because then he’s three years old. I only remember feeling guilty that this was somehow my fault, that he was the autistic because of me.

I remember feeling that guilt that somehow this was me. There was that overwhelming, I did this.

[Speaker 2] (10:06 – 10:14)
OK, so what sort of behaviours did you notice for you to go to? Was it the health visitor that spotted it first?

[Speaker 1] (10:15 – 11:00)
Yes, so Ryan didn’t really speak at that point. So he was three years old and we were into, well, he will speak, he will speak, he will speak. And he didn’t speak then.

And the only thing I can honestly say that he was incredibly quiet. He never cried as a baby. I mean, people say that, but honestly, he never cried.

He wouldn’t make those words or sounds or emotions. And the only thing I noticed was that he used to get up out of his car in the middle of the night and he’d wake up and he’d be sat there looking at the radiator or sat looking at an object. And that would be the only thing I can go back honestly and say that’s what I remember that was different.

[Speaker 2] (11:01 – 11:08)
OK, can we talk about school years? Is that OK with you and how was he at school and what sort of support did he get?

[Speaker 1] (11:09 – 13:38)
OK, so because we were because Ryan’s diagnosis was picked up very early, Ryan went straight into what they call a special school. So he went from the age of four to the age of 16. We were very fortunate that he went to a special school so that everything he needed was provided there.

So we didn’t have to at that point. We didn’t have to fight for the EHC plans or any of those. Or we didn’t have to fight for services at that point because he was picked up so early.

He went to the same school for 12 years. And because of that, everything was done there in-house. And it wasn’t and as good as that sounds, as brilliant as it was, when my son then reached 16, the post-education was a shock because we’d never experienced anything like it.

I’d never known that all these different things existed because they were done in-house. So post-16, when Ryan finished in the July, ready for the summer, services stopped. There was nothing.

No support. Well, when I say service, I meant there was no sort of Monday to Friday. There was no after-school club.

There was no Saturday. There was no summer clubs or the usual things that go along with being in school at that age. So we weren’t picked for or Ryan’s case wasn’t picked on for additional service.

There was nothing. There was no social worker intervention. There was no help.

There was nothing until the September. So basically all the routine that we’d built up over those 12 years came to an end. Everything stopped.

So because Ryan didn’t attend the Star College until late September, early October, it meant that there was this huge void where we weren’t being supported. We didn’t have any help. We didn’t have any assistance.

And then in the September, social worker came along and did all the interviews for post-education, which then sent us on the path to Star College.

[Speaker 2] (13:40 – 13:41)
Is that the national Star College?

[Speaker 1] (13:42 – 13:47)
It is because we live just at the road from there. We live very close to Ellenwood.

[Speaker 2] (13:48 – 14:10)
Yeah, because that’s the college that Harvey’s trying to get into. So Katie Price is hoping that Harvey is going to go there. He had a transition night just last week and it seemed to go very well.

So now she’s just waiting to hear whether she’s got funding or not. So that’s going to be the next battle, as you know. So how is Ryan doing at the Star College?

[Speaker 1] (14:13 – 15:18)
So he’s not at Star College now. So he left Star College a few years ago from Star College to day centres. But it’s quite complicated when Ryan was at Star College, because even though he was technically at Star College, so when he left school, he was given a place at a special autism school or college that was to be built in the Gloucestershire area.

So he was given a place there. That was never built. So what they did was they very quickly came up with a place within the Star College.

So even though Ryan attended the Star College, he didn’t attend it as a student. He attended it as a person that went to a facility within the facility, if that makes sense. Very complicated.

But he was invited by the local council so that he was given a place there, but technically he wasn’t a student.

[Speaker 2] (15:19 – 15:31)
OK, I’m with you. So something I wanted to touch on that you spoke to me about earlier, and I hope you don’t mind me asking, you talked about being a single dad and homeless. Can I ask, how was that?

Was it just you and Ryan?

[Speaker 1] (15:32 – 16:38)
Yeah, me and Ryan, sofa surfing. Ryan grabbing everyone’s remote control and sitting at memories of Ryan, waking everyone up at three, four, five o’clock in the morning. This young man would run around people’s houses or my brother’s house at the time, go into the fridge, take the lunch balls out and plaster all the cheese slices and all the ham slices all over the telly.

I know that brings out the contents of his nappy. But yeah, he was full of beans, shall we say, and he was just this amazing young man that just did what he wanted, when he wanted, and it was an extremely difficult time. I mean, I can look back and smile about it now, but it was very worrying, not having anywhere to live, not having any money.

But I mean, within a couple of weeks, I was very, very lucky that I found us a little bungalow, so it didn’t last for long. But yeah, there was a little bit of time when we were homeless.

[Speaker 2] (16:39 – 16:57)
I can’t imagine the stress that you must have been under, because I could imagine myself and Angelo, because he likes his routine, he likes his things about him, and I just can’t even imagine how that must have been for you. But it was only short-lived. So did your son settle quite quickly in bungalow?

[Speaker 1] (17:00 – 18:06)
No, it took time. Everything that we’ve done is never, everything we’ve done, everything we do, is never in terms of minutes or days or hours or weeks or months. You think in terms of years to turn something around here, you think it’s not, you know, it’s not done quickly.

Routines, I mean, I won’t talk about corona, because we’ll probably come on to that in a minute, but right the way up to the point of corona, all those things we put into place took, so Ryan’s 24 years of age, so we took all those amount of years prior to corona to build up those routines. So the person that you saw pre-corona, walking around, holding hands, smiling and laughing, that went to bed at, say, 10 o’clock, and got up at 5 o’clock, wore clothes that was comfortable wearing clothes, all that took many, many, many years of routine. And then along came corona.

[Speaker 2] (18:08 – 18:38)
So let’s talk about corona virus and COVID, because now, oh, it’s well over a year now, and I know that it was all, obviously, it was just thrown at us, and I know it was difficult for both my sons, and especially Angelo, because obviously he likes routine, he likes, you know, certain things to be a certain way, and then everyone started wearing masks, and all of that, you know, it was very stressful. So talk to me a little bit about how did you cope with the change and how did it impact on your son?

[Speaker 1] (18:39 – 20:09)
I guess the easiest way to explain this is before corona, if routine, routine, routine, routine, routine is everything. So a certain thing would happen on a certain day, we’d have breakfast routines, we’d have dinner routines, we’d have routines for tea, we’d have all that in place. So say a radio program came on, and say there was an error in that, just one error in that program, pre-corona would cause my son to be upset, distressed, maybe by himself, that may last a couple of hours, may last a couple of days.

And then when corona, it meant that that lasted a long, long time. So basically, for the 12 months that corona has been here, we’ve had glimpses of Ryan in the past when he was happy. But mainly we have the upset and the distress that all those routines cause.

And all we try to do is to keep as many as the things that happened before corona to serve as a weight, a way of saying, this is what happened before. Do you see what I mean? It’s sort of like…

[Speaker 2] (20:10 – 20:14)
Give me the next up. Give me the next up.

[Speaker 1] (20:16 – 21:46)
Yeah, so things like, so if we did a dinner and a bedtime routine before, we keep those, we can keep that. So those things, if we, if Ryan went, so say they closed day centres, so they did close day centres and Ryan wasn’t able to attend. So on a Tuesday, for example, at a day centre, Ryan would do recycling.

So at home, we would do recycling. At home, Ryan would wear the same clothes for recycling day that he did at day centre. Those little things are really important.

And so say at day centre, he had a pat lunch for corona. During corona, we kept the same pat lunch with the same items in that pat lunch. And those little things, those anchor points, that’s the word I was trying to come across earlier, those anchor points are so important because they really help Ryan go through the day.

He’s going to be upset. He’s going to be distressed because the routine has changed. But once you can have those anchor points and as the lockdown progresses, so 12 months ago, six months, and then, you know, as we’re coming to the end, fingers crossed, we’ve got those anchor points still in place, but we’ve been able to add to those and slowly build up a routine that he’s comfortable with, but he’s still incredibly distressed.

[Speaker 2] (21:47 – 21:56)
Mm-hmm. Has he asked about college in his ways? You know, has he asked at any point or pointed like or got ready even to go to college?

[Speaker 1] (21:57 – 23:12)
Yeah, so as I said, Ryan left to Star College and he’s now at a day centre. So, yeah, he asks about the day centre all the time. It’s not great because we live very…

Ryan goes to two day centres. The one day centre we live very, very close to. So, yeah, Ryan’s got up and got dressed on occasions.

He’s picked up the phone and asked me to ring them. We waited for three months for news on when he was going to return and we didn’t get any news. So he has been really distressed.

He’s really been missing his day centre. He misses the routine. And that’s, you know, and you’ve got to remember, like, everyone’s talking about Corona.

We’re getting reports on the telly at five o’clock instead of the programme that should be on. We’re getting reports on the rate instead of when it should be on. We’re seeing the signage everywhere for Corona.

We’re seeing people in masks. We’re seeing people queuing up outside shops. And to a young man that does not understand those visuals and does not like a change in routine, that’s really distressing.

[Speaker 2] (23:14 – 23:57)
I totally understand where you’re coming from and I’ve spoken to many, many families, either across social media or through the charity. Although I have shared this before, but some families say they don’t know any different because that’s what their normal routine is anyway. Some of their children or adults are saying they prefer it as Corona because they haven’t got the pressures of the outside world.

So they know that they can be at home or whatever it is that they’re doing. So it’s impacted on families in various different ways. I wanted to chat to you if this is okay about your son’s weight loss and how did you manage that, his relationship with food?

[Speaker 1] (23:59 – 26:14)
Okay, so Ryan would do this thing where he’d have to finish something. So say we had a 12 pack of crisps, Ryan would have to finish every single pack of crisps. And no matter where you hid them, Ryan would find them.

Same with milk. He would take the whole six pint of milk and not just drink a little bit or pour a little bit in the glass. He would try and pour six pint of milk into a tiny glass or try to drink a whole lot of milk and it’d go everywhere all over the floor.

So over the years, Ryan did gain some weight. So we got to a stage where I knew that I needed to do something to help him. So I talked about Ryan’s routine and how important Ryan’s routine is.

So all the foods that he was having, we needed to change those in a way that Ryan would adapt and would help Ryan lose the weight. So very, very simply, right in the beginning, you get a big loaf of bread, I think it’s 800 grams or something like that, and say it’s king’s meal. So you get your big loaf of bread.

So I swapped that big loaf of bread for the smaller 400 gram loaf of king’s meal. And that’s where it started. And by doing that, instead of being 140 calories a slice of bread, it was 55, 60 calories.

And I then put that template across other foods. So say the big bags of crisps, I’d swap them for the smaller bags of crisps. Same brands, that’s important.

There’s no point saying, for Ryan, there’s no point saying, well, now he’s going to eat lettuce or tomatoes instead of eating the sandwich that he would normally have. Same sandwich, same plate, same time. But it’s a smaller slice of bread.

And just doing that over a long period of time and gently tweaking it over a very long period of time, eventually help Ryan lose seven stone.

[Speaker 2] (26:15 – 26:31)
Wow, that’s amazing. Does he have food sensitivities? Because I know that both my sons have food sensitivities.

And one of the things is they don’t like to watch other people eat. You know, it’s very rare that we all eat together. Do you have those sort of issues?

[Speaker 1] (26:32 – 27:19)
So Ryan won’t eat eggs and things like that. And our Christmas dinner will be, these days it’s much better. But when Ryan was younger, Ryan’s Christmas dinner was there was a salmon sandwich covered in tomato sauce.

So over the years, we’ve adapted that. And now Ryan has salmon on a plate for Christmas dinner, still with ketchup. But now there’s veg on that plate.

Now, a lot of people are listening and thinking, oh, big deal, there’s veg on the plate. But that alone took you. I mean, my son eats rocket.

Rocket in tomatoes. I mean, if you’d asked me that 20 years ago, I would never think that we were there and that we would be where we are now. I mean, he eats rocket in tomatoes every time I see him.

[Speaker 2] (27:19 – 27:37)
I was going to say, how did you introduce the salad? Because I speak to many parents where children just like plain, bland, beige food. How did you introduce the rocket and the tomato?

For people listening in, because there’s many parents that are listening in with children, with adults, they’d be thinking, how did they do that?

[Speaker 1] (27:38 – 28:54)
Ryan loves a burger. Absolutely loves a burger. So I noticed one day that we were given the wrong order by McDonald’s and they’d included some salad on it by mistake.

Now, he won’t eat onion. There wasn’t onion on it, thankfully, but they’d included some salad on it by mistake and Ryan ate it. And I thought, hang on a minute.

So I started putting lettuce on his burger. I didn’t hide it because for me that’s important. I don’t want to trick him.

I want him to know what he’s eating and I want it to be his choice. And another thing to do would be, so Ryan would eat different foods to everybody else. Now we all eat the same, but back then Ryan would eat different foods.

But when we go back to routine and familiarity, if we were putting the same foods for Ryan on the table, even though he wasn’t eating it, he was seeing it. And eventually, over a long period of time, he would try it. But we’re not talking about a day or one meal or two meal.

We’re talking about over a long period of time, because a lot of it is familiarity with Ryan. It’s getting used to something and that takes time.

[Speaker 2] (28:56 – 29:08)
Thank you for that. I understand, if you don’t mind me saying, that you’ve also lost weight yourself. So was it a joint effort together, or did you work with Ryan first and then it was yourself?

How did you work that out?

[Speaker 1] (29:09 – 31:06)
So Ryan first. Ryan was over a four-year period of time. We spoke to the doctor from the off, regular visits to the nurse.

We did everything correctly, just to make sure we were doing it right, right vitamins and all. Like I say, and Ryan, because he’s a disabled young man, has an annual health check as well for the doctor. Mine was a little different.

So I started losing weight in April 2018. And by December 2018, I’d lost nearly 11 stone. Wow, amazing.

So I got OCD. So my doctor said to me, he said, well, why don’t you go to one of these fitness programs, like Weight Watchers? And part of being a carer for me is the isolation.

And after a long period of time, that takes its toll on you. And one day, without even knowing, you try to go out and you can’t speak to people because you’ve become so isolated over the years and you don’t even know it or I didn’t know it. So when I got to my doctor, even that making that appointment took a lot of effort.

He said, well, you need to, what about one of these weight programs? And I said, I can’t even go into a room with people. And I couldn’t at that point.

So I thought, well, hang on a minute. I’d recently been diagnosed with OCD, even though I’d had it for a number of years. I thought, well, I’ve got someone for free here.

So I applied the OCD into my weight loss. I did have the help of the doctor. I did speak to the doctor.

I was very sensible. So I applied OCD into my weight loss. And in eight months, I lost nearly 11 stone.

[Speaker 2] (31:07 – 31:13)
That’s really amazing. Well done, Jo. Do you feel so much better now?

[Speaker 1] (31:14 – 31:52)
I do. I feel better in that it’s a huge thing to do. But I personally think as a carer, we’re very under-appreciated anyway.

And I still feel that, if that makes sense. I feel that there’s so much that we can do as carers and that we’re taken for granted for. And if you look at what I did, there’s going to be many things that we’ve done as carers all across the board.

And if only people knew what we were capable of.

[Speaker 2] (31:54 – 32:07)
Definitely. I always say carers are the backbone of our society and we’re definitely undervalued. Can I ask you about your life as a carer?

Has it affected your mental health, would you say?

[Speaker 1] (32:08 – 32:41)
Yeah, absolutely. So I may or may not have had OCD from childhood, but with Ryan, with an autistic young man, I have to do repetition with every single minute of every single day in order to help him to cope, to manage so that he’s not frustrated, so that he’s not anxious. And the stress and pressure that puts on me, then that’s going to have an effect on my mental health.

So yeah, it’s definitely a factor.

[Speaker 2] (32:43 – 33:01)
Can I ask about sleep? Because obviously people who follow me on social media see that, I think I’ve seen you up a few times as well. We call ourselves the wider work club.

What’s sleep like for Ryan and what helps him settle down to sleep or do you have to wait till he goes to sleep before you can go to sleep?

[Speaker 1] (33:03 – 33:42)
So Ryan will go to sleep around 10 o’clock and will wake between 4 and 5. And that’s a good night. If Ryan does seven hours, that’s a really good night.

And before coronavirus, that was pretty consistent. That was one of those routines that I keep talking about and referring back to that we’ve taken years and years to build up. Join corona.

It can be 11 o’clock, 2 o’clock, 3 o’clock. One night Ryan came out at 2 o’clock and said Boris Johnson. Another night it was Matt Hancock.

And then another time he’d ask about lockdown. So it’s there all the time.

[Speaker 2] (33:43 – 34:18)
Oh, I totally feel what you’re going through, the pain. I think that I would say the hardest thing for me is lack of sleep as well because it catches up with you as well. But, you know, we just take a day at a time and some days good.

Some days not so good. Can we chat a little bit now about how do you feel about the future as your son gets older? Because it’s something that I chat to many, many, many parents about and it’s always in the back of their mind.

So how do you feel about, you know, your son’s future?

[Speaker 1] (34:19 – 35:39)
I guess in one word terrified because at the end of the day, everything that we do now, everything that we put into place now, everything we fight for now from education to transport to vaccines, everything that we fight for, you’ve then got to ask yourself the question that when I’m gone, who’s going to fight for those things? So I have to do a very simple thing because I do worry about it, I do stress about it and it has kept me up at night. I have to do a very simple thing in order to stop myself from overthinking and that’s by telling myself that, and I think it’s also for other parents, that you’ve got to remember that if your child’s five years old, you’ve got your child to five years old.

If your child’s 10 or 15 or 20, you did that and I say to myself that mine’s 24, we got this far together and if we got this far together and if you got this far together with your son or your daughter, you’ve got the next bit and that’s what I do to myself to stop those faults because it’s true, we got this far and if we got this far, we got the next bit and apart from that, you’re going to get yourself swamped in the overthinking, the worry and the stress.

[Speaker 2] (35:41 – 36:11)
So have you put certain things in place for when you are no longer around because I’m always speaking to parents, make sure you put a will together. There’s organisations like Mencap that do workshops and they have solicitors that can help you. So our trusts that you could put in place, there’s so many different things just so that if something happens to you, this will kick in whatever it is that you’ve put in place.

Is that something that you’ve been working on or thinking of doing?

[Speaker 1] (36:11 – 36:49)
So we’ve been thinking of the next things in terms of social care when mine gets older. So what stage in mine’s life and our lives as we get older do we implement those things? So we talk about it lots, me and my wife.

So it’s something that we’re very aware of. We haven’t done the will yet. But it’s something that we are constantly talking about the future.

I’m thinking about it so that it helps Ryan because if we leave it too late, then it’s going to greatly impact Ryan. So the timing has to be right.

[Speaker 2] (36:50 – 37:26)
Most definitely because obviously within the last year, parents I would probably say have been thinking about it more because maybe some of their loved ones have died because of coronavirus, so they’ve been putting things into place. So it really is key. I know that we have, but we’re updating things at the moment.

And the other thing is it’s keeping it updated to make sure that it’s current and then it’s going to be able to kick in when we no longer around, which is obviously something that’s at the back of a lot of parents’ minds. So has Ryan got siblings and how does he get on with them?

[Speaker 1] (37:27 – 38:32)
Yeah, so Ryan’s got two younger brothers. So everything sort of works here, works for us. It wouldn’t work for other families, I’m sure, and vice versa.

So we have, like I say again, we have lots of routines. So my two boys, 14 and 16, I can honestly say in all the time that they’ve been going to school, their entire life, their entire school education lives, they have never been late for school. Well, how can you be when you’ve got someone waking you up at five o’clock in the morning?

So we talk about things like the sleep deprivation and mental health and things like that. And we’ve also got to talk about the positives, I mean, and the funny side. And, you know, my boys have never been late for school and my neighbors have never been late for work since we moved in here.

I mean, my son’s the loudest person in the street. When he gets up at five o’clock, everyone gets up at five o’clock.

[Speaker 2] (38:34 – 38:36)
What type of things does he do when he’s up?

[Speaker 1] (38:38 – 39:17)
So at the moment, it’s going to be things like looking at the news. So Ryan can be doing four or five tasks at the same time. So he’ll be looking at the news on a laptop.

He’ll be listening to Alexa. He’ll have a set of headphones on the bed so he can hear a separate music station. He’ll have Bluetack in his hand and then he’ll have the radio on as well.

And he will be scrolling all the different news reports and will pick out certain words and then will call you and ask you about that word. So you go in and then you talk to him about whatever that word might be that’s upsetting him.

[Speaker 2] (39:18 – 39:37)
Can I talk to you about Alexa? Because I’ve spoken to quite a few families that use Alexa and then other families where they say it drives them around the twist so they’ve had to take it away. When did you introduce Alexa into your family?

And would you recommend it for families who’ve got children or adults who are autistic?

[Speaker 1] (39:38 – 41:11)
I personally would recommend it. But it’s different for each family. So we introduced it three years ago.

No, it’s got to be four, four years ago. So I bought Ryan one for Christmas and for a while it sat in a box. I took it out of the box and then found it in the bin.

So Ryan didn’t like it or get on with it at all. Ryan’s speech is good, much better than it used to be. But you can’t always understand what he’s saying.

So the Alexa was in the bin. So what I did was I put the Alexa on the top of the stairs and again we’re going to go back to routine and familiarity. And for a couple of weeks I sat on top of the stairs and would say to Alexa to play certain songs.

I knew Ryan loved this absolute 80s. He just listens to it all the time in the car. So I would say, Alexa, play absolute 80s.

And I was doing this for a while and eventually it went from the landing to the bedroom. And Ryan would say, Alexa, play absolute 80s. And at the beginning Ryan would call me in to talk to Alexa because she couldn’t understand what he was saying.

And then he would copy the words that I was saying to Alexa. And now 90% of the time he will ask Alexa for something and she can understand what he’s saying. So it’s greatly helped Ryan’s speech.

And he has it on 16 hours a day.

[Speaker 2] (41:12 – 42:12)
Wow. So that’s been really useful tool for you then. So can I talk to you about looking after yourself?

Because I have a campaign called Take Five. I’ve mentioned this quite a few times, that it’s really important that we take time out for ourselves to recharge our batteries and just to do things that we like to do. Because sometimes you can just get totally and utterly engrossed in your sons or your son or your daughter’s needs.

So before lockdown, what did you used to do to recharge your batteries and what do you do now? So for me, say, for example, I like to exercise and dance. I love dancing to music because I used to dance when I was six years old.

I love tap dancing and all those sort of things. And that’s the things that I like to do where I don’t have to think about anything. I don’t have to think about anyone.

I can just do it to recharge my batteries and be Anna again, if you like. So how about you, Adam?

[Speaker 1] (42:14 – 44:42)
For a long time, nothing. For a long time when people said to me, you can’t fight every fight, my reply was, just watch me. So I was totally immersed in everything.

I would be in fear of those envelopes dropping through the door or jump when the phone rang, worrying what this was going to be now and have to do all the research that we have to do, Clara’s allowance pit, everything that we have to do. I was doing that all the time. And it was too much.

Quite simply, it’s too much. And then my mental health was greatly struggling. And it was such an alien concept to me to do anything for myself.

And if someone suggested it, it was like I’d be offended. It was like they were saying a swear word to me. I mean, how could they tell me to stop doing the very thing that I loved doing, even though at that point it was affecting my mental health?

So I was speaking to a therapist at the time, and she suggested just to go for a five-minute dog walk. And that’s what it was like for me at the beginning. I couldn’t even contemplate doing that.

So I did. I started going out for five-minute dog walks. And then 10 minutes, then 15, then 20.

And before long, I was walking the dog. And doesn’t that sound crazy? That you have to build up from doing nothing for yourself to just a few minutes.

And that’s what it was like for me. So then I started going with the doctor and the weight loss. I started going to the gym.

So I started going to the gym twice a week, 20 minutes each time. And then when Corona came, I now go for a run. I’ve been on a run today.

And it is the best feeling ever just to have. And we’ve also got to say that when we say those things, we don’t need to be guilty about saying them. We can say, I enjoyed 10 minutes on my own.

We can say we enjoyed 20 minutes chatting to a neighbour or having a coffee. We can say that. We don’t have to feel guilty about that.

But very often, carers, we do.

[Speaker 2] (44:43 – 48:01)
I totally get what you’re saying about the guilt feeling. And again, as I’ve shared this before, because I used to dance when I was six years old. And then when my son Patrick was born, because he was premature and he had such a lot of difficulties in his life.

But 11 years, I didn’t dance at all. And it was in my blood. But I just felt that I had to be so focused on both my sons, the difficulties that they had, the fights that we had, setting up a school.

We’d never ever done anything like that before. It was just totally focused, focused, focused, shattered, no sleep, carry on, living on automatic pilots some of the time. But then I saw an advert, so a tap for fun.

And I thought, that’s what I’m missing. And then I just went along that one night, 30 other ladies of very different ages. And it was nothing to do with autism.

And I just so enjoyed that tap class. And then I go once every Thursday, but obviously hasn’t happened now through COVID. So hence why I do it at home.

So hopefully it’ll start up again. So whether I do tap dancing, whether I do Zumba, it’s just me time. And it’s also good for you.

I like the way it makes you feel when you’re dancing. I totally get what you’re saying. With you, it’s running.

I’ve tried running. It just doesn’t work for me. Walking fast, like Angelo and I go out and we enjoy walking.

We walk like Robocop, the pair of us. We’ve just got this phase going on. But it’s good to be out.

And it’s good to do this sort of thing. I just briefly before I go back to you, I was sent in a book about ADHD. It’s called Me, Myself and ADHD written by Molly Brooks-Dridge.

And this book is about her crazy life experiences with ADHD. It’s an honest and raw insight into her school life, along with some really embarrassing topics that you wouldn’t usually tell your parents. Sorry, Mum and Dad, if you’re reading this.

So if you’re interested in having a look at this book, it’s gingerfire.com. And it’s Molly Brooks-Dridge is the author. And it’s called Me, Myself and ADHD.

And the last thing I just wanted to share with everyone, briefly spoken about clothing. I’m an ambassador for Born Anxious. And there’s many children and adults that are out there that just don’t like labels.

They want to have very soft cotton next to their skin. So if you’re looking for something with a message as well, or without a message, check out Born Anxious. It’s www.bornanxious.co.uk. And there’s one other that’s called Autism Threads. And I sent a t-shirt for there called No Apology. It was the strap line across the front. And basically, again, very, very, really nice t-shirts, lots of positive messages.

So if you’re interested in having a look at that, it’s www.autismthreads.co.uk. So, Adam, we’ve just got a few minutes left. And before we finish, I just want to ask, if someone was to say to you, what advice would you give to somebody that was just starting off with their son or their daughter, the diagnosis of autism? If you could go back, what advice would you give them?

[Speaker 1] (48:03 – 48:50)
Research everything. If someone says something to you, whether it’s a professional or a teacher, go away, research everything. And if you’re going into a meeting, take someone in with you.

Always take someone in with you. If you can, take someone with you that’s been there, done that, and wore the t-shirt. Because just having someone with you, and if you’re not the sort of person that can speak up, there might be someone within the group of people that you know that can.

I mean, I have low confidence in things like that. So my advice would be, if you can’t always be the one that speaks up, find someone to go in with you that might be able to help you along.

[Speaker 2] (48:52 – 50:00)
I would definitely say that, because you can get so emotional when you’re talking about your son or your daughter, and always make a list. If you’re going into a meeting of things that you would like to say, because sometimes when you’re in the meeting, you can get taken over with emotions, or whatever it is that’s been thrown at you in the meeting. So yes, definitely make a list of things that you want to say.

And if you can take somebody with you who is knowledgeable and who has been through this system before, because it can be quite overwhelming, please do take someone. And there’s so many fantastic websites out there. If you want to check out, we have some resources on our charity website, which is www.annakennedyonline.com.

There’s S-E-N-Jungo. There’s Ipsia, I-P-S-E-A, another fantastic website. So there’s so many groups out there.

And also social media can be a fantastic tool. If there’s something that you’re trying to find out, information or about a group, if you just post it and just say, look, hey, I need some help, the autism community are always there to help you and they’ll jump in and there’s always someone. Would you agree, Adam?

[Speaker 1] (50:01 – 50:59)
Oh, absolutely. And I was just going to add something. My son has, it just might help a few people.

My son has quite bad eczema on his hands and his wrists, but he doesn’t like the eczema cream. He doesn’t like the smell of it or it being touched on him. And it’s just something I wanted to say that might help.

What I do is when Ryan’s had a shower, I put the cream on the towel before he goes in the shower. I set the towel aside so that when he comes out the shower, I wipe his hands and wrists with that towel and it’s reduced Ryan’s eczema. So he doesn’t even know that the cream’s on.

And so all I’m doing is impregnating the towel with the cream and using that towel on his wrists. And it really does help because otherwise he wouldn’t have it on his wrists.

[Speaker 2] (51:00 – 51:23)
So what kind of creams do you use because Angelo suffers from eczema and what I find that in the winter is when his eczema really flares up so it could be in the joints of his arms, on the backs of his legs. It’s quite bad this year actually. So and sometimes on his scalp as well.

So what sort of things do you use?

[Speaker 1] (51:24 – 52:17)
I think he uses that. I think it’s called Emoviate. Emoviate cream.

It’s quite a strong one. And so he uses that but he wouldn’t tolerate any creams on there. He wouldn’t have any drink on his hands because Ryan uses blue tack a lot to play with.

And by using the blue tack it stops him picking his hands and fingers anyway but it doesn’t stop the flare up of the eczema. So purely by accident one day I’d wiped the eczema cream off. There was some on the floor and I’d wiped it off on the towel and I noticed that when I used that same towel on his wrists he wasn’t bothered by it at all.

So the cream goes on his wrists and Ryan’s not anxious about it being on there.

[Speaker 2] (52:19 – 52:36)
Okay. Can we talk about sensory issues? Because obviously there’s a lot of adults and children that suffer from sensory processing conditions.

So does Ryan suffer from any sensory issues and what do you do to try and help him with them?

[Speaker 1] (52:36 – 53:51)
I think that’s the thing really because Ryan’s 24 everything we do here whether it be birthdays or Christmases are geared up around that. So he doesn’t like loud noises unless Ryan’s the loud noise. He doesn’t like the lights on.

He doesn’t like the windows opening the summer with the noises from all the different things like lawn mowers and things like that. So even on a very hot day we will have all the windows shut their curtains close and we’re quite isolated. So it’s just us as a family.

There’s nobody else so there’s no one knocking the door. So if someone was to knock the door that would upset Ryan. He’d put his hands on his ears.

So it’s just us really. What I mean by that with it’s when we go into another environment because we’re sort of adapted here. Ryan won’t have those loud noises and things but if we went to a supermarket and there was a baby crying Ryan would put his hands on his ears and be upset by that noise.

[Speaker 2] (53:53 – 54:28)
Okay. I totally get where you’re coming from because my sister always says to me she said you couldn’t live my life. She said it’d be too boring for you.

So she says when I come to your house it’s just everything’s put in a certain way or a room’s laid out in a certain way and it’s all to do with like for us to make life easier for both our sons and for ourselves. So you know the rooms are set up in a way so that we can work and I can still hear what Angelo’s doing and all those sort of things because Angelo has no sense of danger whatsoever. Would you say that was with Ryan too?

[Speaker 1] (54:28 – 55:27)
Exactly with Ryan and I have this little thing that I do. So on all my upstairs doors I have a different item on each door. So on one door I’ll have a bell.

On another door I’ll have a draft excluder. So I’ll always know which room Ryan goes in by the sound of the door that he opens or closes to get in that room which is really important. Yeah so what will happen is so say you need to know what room your son’s in or your daughter’s in and say there are certain items like bathroom or tablets or whatever and I know we put them all out the way anyway but I just mean it’s really nice to know what room Ryan’s in.

So if I hear a scrape along the floor I know he’s in the bathroom and that’s fine. If I hear a clang because there’s a sign on the door the door will clang. I know he’s in our bedroom probably stealing my wife’s chocolates.

So I’ve run really quick.

[Speaker 2] (55:31 – 55:41)
What about food? Does he go in the fridge? Because I know I’m constantly saying to Angelo Angelo out of the kitchen out of the kitchen he’s just constantly going there for food.

[Speaker 1] (55:42 – 56:47)
So we don’t we we like I say we only buy what we would eat we don’t buy we wouldn’t store extra food or things like that and if we did it stays in the car. You know what I mean? Biscuits and things like that because if there’s one packet one packet will be eaten and if there’s two packets two packets will be eaten so you keep the second packet in the car.

It’s just little things like that really. Same with clothes. Whenever I buy clothes I always buy a duplicate set.

I keep the duplicate set in the car. I keep duplicate creams in the car. Duplicate everything in the car just in case and that duplicate medicines in the car.

So if we’re ever somewhere holidays or anything like that we’ve always got that extra and when we do change the clothes the change of clothes that Vines used to wear in goes in the car because A we know we wear them and B we know we’ve got a spare set of clothes. Just little things like that and after the time you don’t even know you’re doing it.

[Speaker 2] (56:48 – 57:07)
I totally get what you’re saying you just have to it’s just you’re on like automatic pilot you know you just know it. It’s just like routine it’s just what works for you and other people probably think oh you know I couldn’t live like that but that’s just our life day to day and you know that’s the way to get to life.

[Speaker 1] (57:08 – 57:28)
We keep a bottle in the car because years ago when Ryan needs to go to the toilet he will go to the toilet. It doesn’t matter where you are or anything like that we’ll get out of the car and go to the toilet so we keep a bottle in the car for that emergency. We never used to but we always do now just in case.

[Speaker 2] (57:31 – 57:45)
Can I ask you and I’ve said this before that you know since living with both my sons I’ve discovered strengths about myself that I never even knew that I had. What would you say that you’ve discovered with living with your son on the spectrum?

[Speaker 1] (57:50 – 58:20)
It’s going to sound big edit really but that I can take anyone on that when those people ring up and say no when we ask them and they say no that after a long period of time that shy timid person that sat in that room with 10 teachers surrounding them that person goes and I’m the person that’s left and I know I’ll do whatever it takes whatever it takes.

[Speaker 2] (58:22 – 59:15)
I totally get where you’re coming from because I was very very quiet when I was a child. I had quite a dominant like daddy was Italian and I couldn’t do this and I couldn’t do that and good girls did this and good girls do that. So yeah and then obviously when both my sons and then I had to fight the system you know with my husband it was just I just thought you know it’s for them and everything I do it’s like creating a platform either for my sons or for other children or autistic adults like them helping them navigate create springboards you know whatever it is that you need to do and it does it can be all consuming sometimes we’re coming and we’ve already got a minute left I just wanted to say thank you so much it’s been a pleasure talking to you Adam and if people want to follow you it’s autism care and share and that’s on Twitter is that right?

[Speaker 1] (59:16 – 59:22)
That’s right yeah and I just talk about me and Ryan and basically the things we just chatted about.

[Speaker 2] (59:23 – 59:57)
Oh so if people are interested Adam is going to be writing an article which is going to be going on the charity website so I just wanted to say thank you again best wishes to Ryan and the family and thank you everyone for listening in every week on women’s radio station all things autism and just everyone please stay safe stay strong keep going we’re nearly there there’s light at the end of the tunnel I just want to say thanks again to everyone and bye Adam thank you very much take care