All Things Autism – Hester & Kelly Grainger, Perfectly Autistic.mp3
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Speaker 3
00:00 – 00:35
Hello, this is Anna Kennedy. We’re talking all things autism and we have another exciting episode for you today with lots going on. We’re obviously still in the middle of COVID here and just to remind you that the fantastic offer and collaboration of Men’s Radio Station and Women’s Radio Station are collaborating with Mental Health Solutions in Business to offer £100,000 worth of free mental health courses for NHS and frontline workers. We feel it’s time to give back, to say thank you and to show our appreciation in a practical, supportive manner.

Speaker 3
00:36 – 01:04
And so this is quite exciting news. If you want to find out a little bit more about it, please check out the Women’s Radio Station website. I also want to remind you of our photography and artwork competition, our charity photography and artwork competition, whether it’s 2D, 3D artwork or photography, and it’s life in lockdown through art. By far the most popular competition so far and the closing date is going to be on.

Speaker 3
01:05 – 01:18
October 2nd. So the first prize is a £50 Amazon voucher. Runners-up will get £15 Amazon voucher. So it’s for three categories, under 11, under 18 and 18 and over.

Speaker 3
01:18 – 01:29
And thank you so much to Taylor Law for sponsoring the vouchers. And our three judges are going to have such a tough time. I have seen some of the artwork that’s come through already. Amazing.

Speaker 3
01:29 – 01:53
I don’t know how they’re going to choose. So just to remind you, our judges are Chris Wilde, an author, David Grant MBE, a vocal coach and married to Carrie Grant and if you’d like to see or listen to Carrie Grant’s interview that I had with her. That’s on our charity YouTube channel on Anna Kennedy Online. And our final judge is Dr. Pam Spurr, who’s also an artist and a presenter.

Speaker 3
01:54 – 02:06
And she’s always coming to our events. She loves our charity and she supports us. And we just want to say thank you so much, Dr. Pam. So just to remind you, it’s on the charity website, www.annakennedy.org.

Speaker 3
02:06 – 02:36
AnnaKennedyOnline.com. Last thing I just wanted to say, I’ve been doing some filming for Katie Price’s documentary and it’s called Harvey and Me. So as Harvey turns 18, Katie is facing the difficult decision about his future and wants to help people understand the realities and challenges of bringing up a child with a disability and to see what Harvey’s life is really like. I know that she is Obviously suffering at the moment because she’s broken both of her ankles.

Speaker 3
02:36 – 02:53
She’s in a wheelchair and we were chatting it could be up to two years before she can walk properly. I can’t even imagine the stress she’s under. And now obviously she’s trying to find a college for Harvey, which is going to be tough because Harvey has got multiple disabilities. So yeah, I’ve been supporting her with that.

Speaker 3
02:53 – 03:09
So hopefully the documentary will be in November. So I will keep you posted and let you know how things go. So, my guests today, I have two guests, I have a husband and wife, I have Hester and I have Kelly Granger. Hello there, is anyone there?

Speaker 3
03:10 – 03:23
Hello, I’m here, how are you? Yeah, I’m all right, thank you very much. Just taking it one day at a time, as I’m sure everybody is. So, tell me a little bit about who is Hester and who is Kelly?

Speaker 3
03:23 – 03:26
So, give me a little bit of background for our listeners, please.

Speaker 2
03:26 – 04:00
So I’m Hester, I’m a mum of two children, India and Hudson, who are, India’s 10 and Hudson is 8, and I’ve been married to Kelly, my husband, for, gosh, we’re nearly 13 years now, and we’ve been together for nearly 19. So kind of, we met when we were sort of, I was early 20s, he was a little bit older, And yeah, we’re kind of, we’re a really close-knit family. And I think it’s been really interesting over the last year, which obviously we’ll talk about shortly, but all three of them being diagnosed autistic. Yeah, so definitely not boring in your house.

Speaker 2
04:01 – 04:07
Absolutely not, no. And then also we decided as well, we’ve already got one Cocker Spaniel, we thought, why not get a puppy during lockdown?

Speaker 3
04:08 – 04:15
Wow. So talking about lockdown and COVID, how has that impacted on your family life, if at all?

Speaker 2
04:16 – 04:37
Well, do you know what is really interesting? Because originally, sort of back in March, when there was talk about lockdown and talk about closing schools, we actually made the decision to take out India and Hudson a week earlier, because both Kelly and I work from home, we run our own business together. And we just were like, why are we going to send them in if we are literally at home? We know the lockdown’s coming.

Speaker 2
04:37 – 04:49
Let’s just take them out now. So that was actually a really positive step, because then the children felt they were in control. They’re both very bright, very intelligent, love a bit of news round. So they knew exactly what was going on in the world.

Speaker 2
04:50 – 05:06
So I think it was up to us to explain how it was going to impact them. My son absolutely loved lockdown. really doesn’t like leaving the house. They’ve both got sort of really quite sort of bad anxiety as well.

Speaker 2
05:07 – 05:27
So sort of even without coronavirus, Hudson’s favourite thing to do is hang out in his onesie because it’s comfortable and he’s got sensory processing disorder and just kind of watch telly with the family or play games etc. So he couldn’t believe that we actually got to do this and didn’t have to leave the house. Right, so were they doing online learning? Yeah, they were.

Speaker 2
05:27 – 05:53
It was tricky because they’re primary schools, so we didn’t have anything from the teachers. Everything was like resources that we had to download, etc., which was really quite challenging. because they really, sort of, I’d say to India, right, we’re going to have to, you know, we’ll do some English this morning, and we’re going to do this, and this is how we’ll do it. And she’ll go, but this isn’t how we usually do it, because usually I’d sit with a partner, and then we’d talk about this first, and then we’d do this, and then we’d do that.

Speaker 2
05:54 – 06:02
So to them, they kind of just couldn’t, you know, they couldn’t grasp, I mean, both hate doing homework anyway, but just couldn’t grasp why we’re having to do schoolwork at home.

Speaker 3
06:03 – 06:30
Yeah I know I’ve spoken to so many families where it’s worked quite well for some families and then other families it just hasn’t worked at all and parents have just found it so stressful and then trying to learn online some of the pupils and some of the families were saying that they prefer to have someone maybe a teacher or a teaching assistant sitting next to them, they can’t learn from the computer, so they just had to do the best that they possibly could.

Speaker 2
06:30 – 06:51
Yeah, we just got really creative and there’s some great online resources, I bought tons of books online, they could do with whiteboard markers, I was printing things out, I kind of you know, it’s one of those where India has literally talked about being homeschooled for about three or four years now. She’s been absolutely desperate when it came to it. She’s like, oh my gosh, this is awful.

Speaker 2
06:51 – 07:14
And obviously, you know, it wasn’t homeschooling in the normal sense. If you’re doing proper homeschooling, you meet up with other children and, you know, it’s much more sort of, interactive isn’t it I imagine but I think you know it did make her realise that actually although she doesn’t love school at all they both find school quite challenging she actually likes the sort of social side of it she likes the routine of going in etc so it was actually really interesting because she doesn’t ask to be home schooled anymore.

Speaker 3
07:16 – 07:28
Okay so how was it for you sort of being with your husband running your business from home teaching so how did you manage to juggle everything did you have a timetable what did you do?

Speaker 2
07:29 – 08:08
yeah do you know what at first we were like right we’re going to go for a timetable and this is what we’re going to do and actually you know with autism each day is different and kind of you might wake up and they’re kind of ready and raring to go and another day it’s really not happening so we actually decided really quickly to be really flexible with our approach and I think really we kind of do that in our day-to-day lives anyway so you know we might have some plans for the weekend but actually if someone wakes up and it’s quite clearly you know, not having the best start to the day or whatever, we will sort of tweak those changes rather than just rigidly, you know, sticking to a routine. And it’s really interesting because when I look back at them being younger, this is always how we’re parented, which I find really interesting.

Speaker 2
08:08 – 08:49
So we’ve kind of always not that we knew they’re autistic, but we’ve always, we’re fairly chilled parents, we’re quite laid back, we weren’t ever super into routines, you know, so it was for us with lockdown, it was, we just kind of took each day as it came really, but actually I think now with coronavirus, even this morning, my son’s birthday is sort of in December, and he said, is coronavirus still going to be here in three months time? I said yeah he said oh my birthday is going to be ruined because we kind of were all quite grateful that none of us had birthdays during lockdown and actually obviously because of the you know sort of keeping numbers to six etc again you know we don’t know how long that’s going to go on for so birthdays will be impacted.

Speaker 3
08:50 – 09:05
So Hester do you mind I’m always interested in diagnosis could you let me know how long it took for diagnosis for both of your children and was it difficult was the process difficult and do you know what it’s like now?

Speaker 2
09:06 – 09:27
Yeah, I think that’s such a good question because I think everybody’s journey is really different to getting diagnosed. For Hudson, we’d actually sort of talked to CAMHS a couple of times and each time they’d sort of said, look, we don’t really know if we can refer him because he’s kind of borderline. We’re not quite sure. So let’s sort of leave it for now and see if anything else sort of develops sort of trait wise.

Speaker 2
09:27 – 10:02
And meanwhile, I was actually referred to a parenting of anxious children workshop with CAMHS, which was really, really invaluable. and then we spoke quite a lot at length about different things over the course of the sort of six weeks that I was on the course for and the ladies were were very sort of encouraging and sort of said look from everything you’ve said we think Hudson does sound like he’s autistic you know, do try and get him diagnosed. And we suggest just because of the weight at the moment, which I think was about two years in Berkshire, you know, if you could afford to go privately, then do that.

Speaker 2
10:03 – 10:54
So we saved up and made the decision to go privately for Hudson. Yeah it really was it was it was difficult because I think over the years it’d been kind of mentioned and then kind of slightly swept under the carpet um and then what was really interesting actually is meanwhile I then went on a um sort of I’m kind of one of those people that if you I want just to understand everything about it so I decided to sort of start really researching autism and found out there was like a coffee morning locally so I went on to that and this is before he was diagnosed and I just thought I’d just go and see and say hello to people and just chat and find out more and I walked in there and there was actually a former teaching assistant from the school and I never forget it because she said to me oh are you here for

Speaker 2
10:54 – 11:11
India and I literally was like no, I’m here for my son Hudson. Should I be here about India being autistic? And she was like, I mean, bless her, I think she wanted the room to swallow up. But she’s got, I think, three diagnosed, she’s got five children altogether, three diagnosed autistic.

Speaker 2
11:11 – 11:34
And I think possibly the other two, she always says might be on the spectrum. So when it comes to her stuff, she really knows it, you know, she wasn’t just sort of taking a guess. And she’d actually been India’s teaching assistant in foundation. And I sort of, I came out of the coffee morning a little bit shell-shocked, and I sort of rang Kelly and said, gosh, you know, I’ve just had a really strange, sort of unusual conversation.

Speaker 2
11:34 – 11:53
And then I actually reached out to her, because she lives locally, and just said, look, can I come and chat to you? And she basically started talking through, she said, I just sort of, you know, obviously know a lot about autism, her children are older than ours. And I just thought, she said, I’ve always sort of just thought with India, you know, is on the spectrum possibly. And, you know, just worth keeping an eye.

Speaker 2
11:54 – 12:29
So then when we were getting Hudson diagnosed with a psychologist, how we were obviously asked lots and lots of questions and for the answers that were no for Hudson I was like oh but India does that and then it was like oh no Hudson doesn’t do that oh but India does that and so we it was really really interesting and I still believe I’m still in touch with the lady now Trudy she’s an amazing woman and I still believe if I’d not gone to that coffee morning I don’t know if India would be diagnosed right now because yes things are meant to be sometimes they really, really are. And I’ve never, bizarrely, I’ve never been out to the coffee morning, there’s nothing wrong with it, but I’ve just never been back.

Speaker 2
12:29 – 12:51
And I just kind of think, gosh, that really was, I was meant to be there that day. So then we got India diagnosed privately as well, literally, well, a few months after Hudson. But actually, you’ve obviously got to get evidence from the school. So she had a meeting with a psychologist, then obviously spoke to us as well about, you know, India’s history and background.

Speaker 2
12:51 – 13:18
And then spoke to the school. Now India’s teacher at the time was really young, absolutely amazing teacher, but just didn’t have tons of experience with autism. So came back just saying India’s a model student, she’s amazing, she always interacts, she’s always got lots to say, she knows lots of amazing facts about lots of different things. So actually I was really frustrated because the psychologist said we can’t diagnose her because we’ve got no evidence from the school.

Speaker 2
13:18 – 14:00
so I think this this is where you sort of end up don’t you I think as a parent trusting your gut and trusting your instinct um so I spoke to the head teacher and just said look really really not happy that you know she is autistic the psychologist couldn’t see it at first she spent an hour with India the first 40 minutes she said to me I just thought you were mad I just thought you were seeing things so the last 20 minutes India couldn’t mask anymore and the mask came off and that’s what she does all day every day at school for six hours a day And so the school at the time was becoming an academy and there was an amazing woman who used to be a former head teacher who was helping them with various bits. And she spent some time with India within an hour, rang me and said, yep, absolutely.

Speaker 2
14:00 – 14:06
Again, she’s also got an autistic son, so she needs signs that she’s looking for. We managed to get India diagnosed about six months later.

Speaker 3
14:07 – 14:14
So how did you feel about having two children being on the spectrum? And can I just ask, had you ever heard of autism before?

Speaker 2
14:15 – 14:34
Yeah, absolutely. I’d heard of autism. I was very aware of being on the spectrum, etc. But I think like a lot of people, you have quite, even now, when I say my children are autistic, you can see the look on the face of the people I’m talking to are thinking, well, gosh, you know, what is it?

Speaker 2
14:34 – 14:57
How extreme is it? You know, are they kicking you and biting you and punching you and having meltdowns in the street? Or, you know, I think that’s the thing with autism is when you say it, people never quite know how to react. um I think it was with Hudson it was definitely a sense of relief because I think it meant that we could, although we didn’t really get any support afterwards, but I think it kind of then made sense and things started clicking into place.

Speaker 2
14:57 – 15:40
With India I felt a lot of guilt um that kind of would be really focused on Hudson and his food um exception trying to get get him sorted with that. I felt a lot of guilt about not having spotted anything with India um which I still feel bad about today um because I think you sort of look back and I think oh gosh this happened in that scenario and that happened and it was probably a sensory overload and that’s why she had a meltdown um we actually joke that she was allergic to our house because we’d be out all day and she’d be amazing and we’d come home and she’d just literally kick off and be in an awful mood and everything we now know she’s just home and she can literally you know unmask and just compress can’t she you know just let the fizz out

Speaker 3
15:40 – 15:41
Yeah.

Speaker 2
15:41 – 15:49
How are they together, brother and sister? They’re amazing. They’re just best friends. They’ve just moved back into bedrooms.

Speaker 2
15:49 – 15:59
Yeah, it’s amazing. They’ve just moved back into sharing a bedroom again because they didn’t like being apart. And I think that’s because they get each other. They’ve always been very close.

Speaker 2
16:00 – 16:08
And I think, yeah, it’s lovely. India’s much more outgoing. There are many versions of Kelly and I. I’m really chatty, as is India.

Speaker 2
16:08 – 16:20
And Hudson’s sort of a bit more quiet and thoughtful, but with an amazing sense of humor and very sarcastic, which the teacher sort of wanted to clarify. He’s autistic. He does get sarcasm. I said, absolutely.

Speaker 2
16:20 – 16:24
Yes, he does. So I think that’s the sort of myths around it.

Speaker 3
16:25 – 16:44
So you mentioned your husband Kelly and he is 44 and was diagnosed as autistic quite recently December 2019. Now I know Kelly is not very well but I know he’s sitting there with you so are you willing Kelly just to talk a little bit about your diagnosis and how you feel about it?

Speaker 1
16:44 – 17:09
Yeah, let me try. Let me apologize to my voice. So I was diagnosed last year, the back end of last year, and it really came out of the process with India and Hudson, going through the process, understanding what autism actually was. I mean, I knew a lot less about it than Hester at the time.

Speaker 1
17:10 – 17:42
And I think for most people, unless it impacts them directly, there’s no real, I guess, there’s no real need to understand about autism, if that makes sense. So I think it was through the process of getting them diagnosed that both Hester and I started to kind of have conversations about, well, these are some of the things that are coming out from India’s diagnosis, or here are some things that come out from Hudson’s. They sound very similar to you. So that’s when we started talking about it and going, OK, this is interesting now.

Speaker 1
17:43 – 18:13
A lot of the traits that they were showing, that were being picked up, were traits that I have now. Whether people knew that or not, I don’t know, but a lot of my, I guess my autism, as I put it, is very internal. A lot of my challenges are around internal things, around anxiety and needing to be in control and overanalyzing things. a lot of people won’t see, I guess, that I’m autistic because it doesn’t impact them.

Speaker 1
18:13 – 18:25
I think a lot of people think that way. They think, well, you know, you don’t look autistic or you don’t come across autistic to me. It’s because I haven’t had that impact on them. But in turn, I have all of those challenges going on every day.

Speaker 1
18:26 – 18:31
So we talked about it. Sorry?

Speaker 3
18:31 – 18:53
I was saying, why did you feel that you needed to go for a diagnosis so late in life at 44? Is it just you just wanted to know or did you want to do something with the diagnosis? Because I’ve spoken to quite a few people and some people say, I don’t want to do anything with it, I just want to know. And others say, I want to get support now, so I’m going to be able to access this, this, this, this.

Speaker 3
18:53 – 18:55
So how was it for you?

Speaker 1
18:55 – 19:13
I think a couple of things. I mean, the main thing was I’d always known that there was something Um, you know, I would struggle in social situations. I would be physically and mentally exhausted if I had an event from work. So, you know, most of my life worked in sales and marketing, um, and it’s quite senior, senior level.

Speaker 1
19:13 – 19:38
So it was always about meeting customers, customer events, engaging people, lots of small, small talk, which I hated. And I understand why now. Um, and so for me, it was about, I knew there was something, um, I knew there was something that was maybe. creating a barrier for me that was causing me challenges internally, making me anxious about certain things.

Speaker 1
19:38 – 19:51
So really getting the diagnosis, I wanted to know one way or another for sure. Just the feeling of, oh, I’m pretty sure I am, wasn’t enough for me. Because what if I wasn’t? What if I wasn’t autistic?

Speaker 1
19:52 – 20:11
Then what was it? What was it that were causing all these issues for me internally? So that was the main reason for getting the diagnosis. And also, I think, to kind of, you know, looking back, it was about being a bit of a role model for the children as well, because I think them being diagnosed as autistic, I was pretty sure that I was.

Speaker 1
20:12 – 20:31
So being diagnosed as well meant that I could be a real kind of, I guess, a role model, a kind of ally to them to say, look, it’s okay. you know, some parts, it’s not challenging, but it’s okay. It is what it is. You wouldn’t be the person you are today if it wasn’t for, you know, your autism.

Speaker 1
20:32 – 20:56
And the same with me. I’m 44 and look where I’ve got to. And yes, there’s been some, you know, struggles, some challenges along the way, but it’s okay. And I think that gave them, you know, a bit more confidence in saying, well, actually, My dad’s not just telling me that it’s okay to be autistic, he’s telling me from a base of experience.

Speaker 3
20:56 – 21:12
Okay, so Hester, how was that for you finding out that your husband was diagnosed on the spectrum and your two children and did the penny drop and think, oh that’s why I used to do that, that’s why I used to do that, oh I get it now.

Speaker 2
21:12 – 21:33
Yeah, you’ve literally hit the nail on the head. I mean, I always look back to when we first met, well, we’ve kind of known each other for years before, but then we, we remet about five years after we’ve been together for 19 years. And within a few months, we actually were going traveling to Australia. And, you know, just generally, I’m I’m, you know, very glass half full.

Speaker 2
21:33 – 21:47
And we were going to Australia and I was, you know, could barely contain my excitement at the airport. And I said, are you excited? And Kelly just went, yeah, should be good. I was like, literally left our jobs.

Speaker 2
21:47 – 21:57
We’ve like, you know, both lived, I lived in Norwich, Kelly rented in London. We’ve both given up our flats, given up really good jobs. I was ITV at the time. Kelly was a successful headhunter in London.

Speaker 2
21:57 – 22:15
And we were kind of like, I just, in my head, I just remember thinking, Oh, okay. Like, oh, and it’s really funny, because we kind of do kind of pinpoint that moment where it was just one of those. And over the years, like, I’m not very good with dates. So I remember how long things, you know, you know, how long we’ve been together, things like that.

Speaker 2
22:15 – 22:27
But I really struggled to remember the date that we got, not the date we got married, like the year we got married, and things like that. Whereas Kelly can literally remember like a line from a film from the 1980s. And he’s always like, don’t you remember that? I’ve only seen it once.

Speaker 2
22:27 – 23:01
It’s like, you know, me too. Like, oh, and all these years we’ve kind of just talked about it and just gone, I really wonder if you’re autistic. And then you go, yeah, but then like we were saying about the cliches, you know, but you’ve got to, you know, you’re really senior at work, you do loads, he used to travel across Europe etc and abroad to America and things and lots of socialising award ceremonies and used to think well you’d find that really hard if if you’re autistic and actually we look back now and go oh my god he would come home from being away for a few days of work and he we used to say he’d run out of words because there

Speaker 2
23:01 – 23:11
was just nothing left. because now know sensory overload absolutely wiped. So once you know that, you can then factor that into your schedule. So that made sense.

Speaker 2
23:12 – 23:22
But before, oh, and I used to say, I’ve been so excited and so looking forward to you coming home and you were too tired to talk. And I’d say, just be like, have you run out of words? Yeah. And it was just, and that was kind of how it was.

Speaker 2
23:22 – 23:34
So for me, it was actually really positive to be able to say, yeah, he’s autistic. And I’m really proud that they’re just amazing. All three of them, we call them the A team. the triple threat as well.

Speaker 2
23:34 – 23:49
I just think it’s, he’s such a positive role model for them and, you know, if they don’t want to go to school, which is quite frequent, or they’re having a bad day, Kelly says, oh daddy was like that when I was, I remember when I was little and I did that and I remember, whereas I quite often get, oh you don’t understand, you’re not autistic.

Speaker 3
23:50 – 23:55
What about your family? Did you tell them and were they supportive?

Speaker 1
23:57 – 24:14
That’s a good question. I don’t think I did actually pick up the phone or have a direct conversation to tell them about me. I mean, we told them, I believe, about India and Hudson in a roundabout way. I think I probably announced it on LinkedIn before I told them.

Speaker 1
24:17 – 24:40
And I don’t think I’ve even had a proper conversation to say, you know, I’ve been diagnosed, what do you think? And do you know what the disappointing thing for me is that none of my family have ever said to me, oh, so, you know, you’ve been diagnosed, your diagnosis, tell us more. We want to understand what’s all that. They’ve almost kind of ignored it, carried on as if it hasn’t happened.

Speaker 2
24:41 – 24:59
I think I actually told, I’m really close to Kelly’s dad, he’s, we call him granddad, and he’s amazing. And I told him about the children and he sort of slightly, you know, used to be, oh, goodness me, or, you know, what’s that all about? Kind of, you know, quite old school. So, you know, I would sort of spend quite a lot of time explaining it.

Speaker 2
24:59 – 25:19
And then when Kelly was diagnosed, again, I sort of, I told, I told him, I think, didn’t I? And I sort of said, and explained about it. But I think, like, Kelly, you know, has really hit the nail on the head, I think, because his, for the children and for Kelly, because their autism doesn’t impact anyone else. you know, I often get, I can’t believe Kelly’s autistic.

Speaker 2
25:19 – 25:37
Oh, he really doesn’t seem it. And even, you know, he had that when he was handing in his notice at his job with his boss. He, you know, he decided to set out, we’re going to go into business together because obviously then he can manage his diary. He can manage, you know, there’s no more traveling away with work, etc. And his boss said, God, you don’t, you don’t look autistic.

Speaker 3
25:39 – 25:44
So how do you answer that? I wish I had a fiver for having said that. I’d be rich.

Speaker 2
25:45 – 25:47
Yeah and it’s like well what does autism look like?

Speaker 3
25:48 – 25:59
So talking about autism you’ve set up a company called Perfectly Autistic so can you tell me a little bit about that and why you set it up and how long has it been going?

Speaker 2
26:00 – 26:08
Yeah, absolutely. So it’s a community that we run. We’ve got our own business together that we run, which is Hudia. So we do PR, web design and social media.

Speaker 2
26:09 – 27:01
But Perfectly Autistic is a sort of Facebook community, but there’s a website to it as well, perfectlyautistic.co.uk. And we just found reaching out and connecting with other people that you literally get handed the report you may get a leaflet you may not and you’re literally sent on your way and I can’t think of anything else where you would be diagnosed and literally said anyway I’ve got scoliosis and I had it operated on and I had support for the next like 10 years after that you know and with autism you’re like oh there you go handshake best of luck and I just think so many people are just lost and don’t know where to turn so again being you know being positive we were like right well let’s do something with this And so we launched Perfectly Autistic, it’s been going probably since about sort of May, June time, and we’ve launched our Facebook group as well, which is a, there’s a Facebook page,

Speaker 2
27:02 – 27:37
and there’s a group as well, a community, and there’s about 200 people on there now, which is, I’m over the moon with it, because it’s literally been going for a couple of months. And we just want to be a place, because I think there’s there is much more help out there for parents of autistic children. But I think when it comes to being an adult diagnosed, however old, you know, 20 upwards, or being a partner of someone who’s autistic, there just doesn’t really seem to be anything. And I think I joined quite a few Facebook groups and I found a couple that are amazing and just absolutely brilliant support.

Speaker 2
27:38 – 28:31
One is called Parenting of Autistic Girls and it’s such a lovely non-judgmental community and you can just post oh my gosh had the worst morning at school drop off etc and people go oh my gosh I’m with you I’ve been there etc or I saw someone posted saying my daughter just left for university and never thought this day would happen and people are like you know we don’t know each other but you’re like that’s amazing congratulations and then I joined other Facebook groups which really weren’t for us very negative very you know and I understand autism isn’t all you know rainbows and flowers and things but we just wanted there to be some useful resources which is what we sort of gathered together um on Perfectly Autistic on the website and we just wanted there to be a community where people can connect and you know we had a woman on there a while ago saying I think you know I think my boyfriend’s or my boyfriend’s being diagnosed autistic how do I manage it etc you know how do I communicate with him or you know we’ve got a couple of people on there

Speaker 2
28:31 – 28:47
in their 50s and 60s who’ve just been diagnosed and said we’re really glad that we found the community because there is much more help for parents of autistic children than there is for partners or as I just call them people, whoever they may be.

Speaker 3
28:48 – 29:01
So if you had to give some advice, first of all to Kelly, for people that might be going through the diagnosis process and they’re apprehensive and they’re an adult, what advice would you give them now in hindsight?

Speaker 1
29:02 – 29:24
I think, you know, and we get asked questions on the community as well, particularly myself, about the diagnosis process, and that’s one of the biggest sort of topics that they ask about. And I always say, look, you need to have your own reason for getting a diagnosis. Don’t do it because you feel other people are doing it or feel you have to. You need to have a reason for doing it.

Speaker 1
29:24 – 29:49
My reason was I needed to be 100% sure, one way or the other. And if it was a no, then I could go down a different the first thing is, you know, have a reason for getting diagnosed, don’t just do it for the sake of it. And the second thing, you know, is just about finding other people in a similar situation. Ask lots of questions because people aren’t going to come to you and give you lots of answers.

Speaker 1
29:50 – 30:23
You need to actually go out and find the answers you’re looking for, either through communities, through people you might know that have gone through the process, finding exactly what the process is, how long it is, what happens after the process. Because I think a lot of people think that they do go through the process, if they get a positive diagnosis, then they’re maybe provided a load of support and somebody’s going to give them, you know, a magic answer that says, this is the plan we’re going to set you to help you manage your autism. And that just doesn’t happen.

Speaker 1
30:23 – 30:25
So I think it’s really about

Speaker 3
30:26 – 31:07
I was going to say there’s a lot of parents that are looking for the holy grail as well and there isn’t one. It’s just all the children and adults are just so different from each other and it’s very much trial and error, but I think whatever process that you follow, whatever the way you’re going, it’s got to be consistent. And I think that’s the key word, consistency. And Hester, can I ask you I always ask parents for tips but I don’t get that many wives of adults on the spectrum so say for example there’s a young lady in her 20s and she wanted to go out with an adult on the spectrum is there any

Speaker 3
31:07 – 31:14
tips and advice that you could give for her if she’s a little bit apprehensive worrying about you know am I doing the right thing?

Speaker 2
31:15 – 31:37
Yeah I think firstly you can’t find a more loyal and trustworthy partner. I mean, we always joke that Kelly’s really not very good at lying, which I think in a relationship is obviously a huge bonus. You know, I think for me, it’s about the communication. I think since Kelly’s been diagnosed, it’s made, we’ve always been incredibly close, thankfully, and we get like an absolute house on fire, even after all these years.

Speaker 2
31:37 – 31:57
And I just think, for me, it’s about making communication really, really clear, because for years, I’m not joking, Anna, I’ve said, oh, the bin’s full. Kelly’s response, is it? A neurotypical person would be like, oh yeah, okay, I’ll empty that. And then I would go, I’ll empty it then in a huffy voice.

Speaker 2
31:58 – 32:08
And then Kelly would be like, why don’t you just ask me? And now I just say, Kelly, the bin’s full, please, can you empty it? Yeah, no problem. So I think it’s just being a lot more straight talking.

Speaker 2
32:08 – 32:21
And I think as British people, we kind of go, oh, that sounds a bit rude, or I don’t really want to say, can you do this? Or I’d sort of, you know, before sort of say, oh, it’s nearly bath time. Kelly’s like, okay, great. I’ll be like now please can you run the children a bath or do you want to sort the dogs out?

Speaker 2
32:22 – 32:58
Oh I’ll run the children a bath and I think it’s about that and also we’ve joked for years that you know around the shops etc I love shopping and I’d sort of you know say oh just just a couple more shops and then Kelly would genuinely get really quite annoyed and frustrated that I’ve sort of said a couple more shops and actually I’ve ended up in six. Well now actually I say right these are the shops we’re going to there may be a couple of extra that I need to pop into and he’s like yeah great. So I think when it comes to offering advice to dating um someone autistic I just think I would do some reading up on it because I think it’s really interesting just to understand a bit more and read about how they may view things.

Speaker 2
32:58 – 33:45
I kind of was trying to explain it to India the other day and she said she tells her friends she’s very proud to be autistic as is Hudson which I think is really brilliant at their age and she said I just sort of say to people oh I might find things a bit louder or brighter or smellier etc and I said you just sort of see the world differently and it’s like the whole android and iphone analogy they both make phone calls they both do messages etc but they just process it differently so i certainly you know gosh you know never would be put off by you know nobody should ever think oh gosh i don’t want to go out with someone because they’re autistic you know but i think it’s understanding and it’s about being really straight quite straight talking really can i just throw in um and yeah also a big one is don’t make assumptions don’t believe all the stereotypes out there

Speaker 1
33:46 – 33:53
because I think people think of an autistic person and they have a stereotype in their head. I think, you know, go and find yourself.

Speaker 3
33:54 – 34:21
Definitely, I definitely agree because obviously I live with three men in the house, I’m the only woman apart from Chanel. So yeah, I’ll ask you about sensory processing difficulties with having three people in the house that are on the spectrum. Have you sort of set up your house in a certain way? Because I have, but sometimes you don’t realise because it just falls that way, if you know what I mean.

Speaker 3
34:22 – 34:26
So have you set up in such a way so that it works for everybody?

Speaker 2
34:26 – 34:36
Do you know what? That’s really interesting. I’ve not actually thought about it like that. And I think you kind of like I said, we’ve been parenting in an autistic friendly manner without knowing we’ve been doing it.

Speaker 2
34:36 – 35:10
So, you know. Hudson wore the same blue t-shirt when he was three for goodness only how long before he moved on to the three-piece suit I mentioned and you know we’ve over the years as a lot of autistic parents had spent an absolute fortune on socks on pants on you know jeans that never get worn in India we’ve discovered she’s getting a bit older now so she’s kind of she’s a bit more willing to to try some new clothes for example rather than the sort of you know I used to buy four pairs of the same leggings and three of the matching hoodies because I knew she loved them But I don’t necessarily set it up in a certain way.

Speaker 2
35:10 – 35:38
I think it’s really difficult because I think, you know, we need to, India keeps saying she wants, now she’s moved back in again, the bedroom with Hudson. She kind of keeps saying, I want my own space. And they’ve got a sort of games room that they can hang out in. um you know and I think it’s just about for me the sensory I think is is also taken into account that for Kelly because as you know you know with sensory processing disorder if someone’s got sensory processing disorder it doesn’t mean that they are not loud so one

Speaker 2
35:38 – 36:04
of the children can be incredibly loud but then get caught that the other one’s very loud, and I think I then have to sometimes remind them, you know, don’t forget daddy’s autistic too, and this is actually getting quite loud, but then poor Kelly is married to me, and as you have heard over the last however long, talks ten to the dozen, so I have to remember as well that actually sometimes Kelly just needs some downtime where I don’t talk non-stop at him.

Speaker 1
36:06 – 36:20
I think as a household we’re quite considerate to the you know, to everybody in terms of noise, smells, those sorts of things. Giving, you know, Indira Hudson, even myself, a bit of time if something’s a bit overwhelming.

Speaker 3
36:22 – 36:41
Yeah and the other thing I was going to ask you Hester is obviously with you working with Kelly then obviously you’ve got your kids at home and then you don’t know what’s going to be happening soon with reference to Covid and you know we’re going to have another lockdown. Do you feel like sometimes you’re being suffocated because you haven’t got any space to yourself?

Speaker 2
36:43 – 37:16
Yeah well I think it’s I love being out and about and I get sort of, I’m very extroverted, so I get my energy from other people. And, you know, Kelly and Hudson, so India is the same as I, and then India, Kelly and Hudson both get their energy from being at home and recharging. So I think one of those where, you know, honestly, my downtime is going out shopping and hitting a shopping centre. And, you know, that’s kind of, Kelly’s really good at, not so much, obviously, at the moment during coronavirus times, but before that, very much, I would go out with my friends, I would love a good night out, You know, meet a friend for coffee.

Speaker 2
37:16 – 37:48
I think it’s kind of, you know, he’s always been really supportive in the fact that I need to go, do you know what, I just need to go and blow off for a bit and just go and have some fun. Not that home isn’t fun, but you know what it’s like, it’s really fun, I think. you know, whereas I think it was really funny when we had someone, we did the Early Bird Plus course through CAMS, which was, sorry, through our local authority, which was amazing, but sort of found out about that through CAMS. And the lady came round and said, you know, it’s really good to have, you know, have a bit of time on your own.

Speaker 2
37:48 – 37:54
And do you ever get to do anything nice? I was like, yeah, literally just had a night out. I’m off to Ascot races. This was a couple of years ago.

Speaker 2
37:54 – 38:03
Off to Ascot races next week. And then I’m going shopping with a friend. She’s like, oh, so you’ve got that balance right. So I think so many parents, and partners of autistic people.

Speaker 2
38:03 – 38:16
I think, do you know what, it’s much harder work if I go out and the children hate me going out and they cry if I leave etc but I can’t not go out and they need to understand that that is life and that people do go out but then I will come home again.

Speaker 3
38:16 – 38:54
Yeah it’s all about balance as well because I had that obviously when the kids were younger and because Patrick was premature and all the rest of it so it was just I felt guilty going out I need to scream and hang from the neck curtains going out to work. It was tough but it’s just you do need that little bit of space and I have said to parents and obviously we’ve got this campaign called Take 5 and I say I know it’s hard especially if you’re a single parent you know just do what you can to have five minutes just for you whether it’s have a bath, shut the door or walk around the block or whatever it is just to give you a little bit of headspace.

Speaker 3
38:54 – 39:10
So we’re all about talking about well-being, mental health, and no more than now, because obviously, you know, we’re going through difficult times. So, Kelly, what do you do for your well-being and to help with your mental health?

Speaker 1
39:11 – 39:27
Peace and quiet. I probably have to recharge and watch a good movie. Just kind of almost do nothing. I think to recharge my batteries, it’s just about not having loads of noise, not having loads going on, um that’s kind of my downtime.

Speaker 1
39:27 – 40:06
I’m quite happy to go out um you know I’ll go I was saying town shopping with Hester, I’ll go out with the kids um so so there’s nothing kind of really I guess you’d call it unusual about what I do in that sense but I think I probably compromise quite a lot I would say, I do say so myself, um I probably compromise a lot and I’m very flexible, I’m very relaxed and you know I will follow what the household would want to do. whether that is something that is challenging for me or not, I’ll do it. And then I’ll deal with the kind of consequences in terms of the internal, you know, anxiety would all tie this later.

Speaker 1
40:06 – 40:46
But, you know, I’m not going to stop the family doing what they want to do because of my autism, if that makes sense. But I think you touched on a good point, Lauren, which I don’t think a lot of people do. There’s a lot of support and talk and help for autistic people, but I don’t think partners of autistic people or parents who aren’t autistic, I don’t think they probably get enough credit and support that they probably deserve and quite frankly need. I think a lot of them are just expected to hold everything together and be that support.

Speaker 1
40:46 – 41:19
And Hester is, you know, she holds the family together, which is great. And I don’t think you know, I don’t think they get enough credit for that. You know, they go through a lot tougher time in a lot of cases than I would with, you know, with autism because they’re having to live their life, but also compromise and change and try and fit in to help support somebody else. So I think, you know, there needs to be more said, I guess, for those people that are partners and parents and maybe some more support out there.

Speaker 3
41:20 – 41:22
Oh, you’ve got a good one there, Hester.

Speaker 2
41:23 – 41:35
Haven’t I? Honestly, I don’t know how I bagged him. He’s just, I think this is the thing, I think it’s, when we talk about that, I’m always like, he’s just always, almost like he’s exhausted after 19 years. He’s like, oh, go on then.

Speaker 2
41:35 – 41:47
And I just think, you know, I just think he is. We do get a lot of questions going on. My husband says this and I can’t do this and I can’t do that. And, you know, Kelly’s Kelly always jokes that if it wasn’t for me, we wouldn’t do anything.

Speaker 2
41:47 – 42:06
They’d never leave the house. And I just think I think he doesn’t quite take enough credit for, you know, how fab he is. And he’s just so amazing with the children is such an amazing father. um and husband as well and I just think you know sometimes I do forget and I have to take a rain check and go do you know what do you want to chill and I’ll take the children out for a bit or right you know and it’s about

Speaker 2
42:06 – 42:35
then not rushing off and hiding the house because I think just getting back to mums quickly you sort of said about that and also single dads as well you know that you then it’s too easy isn’t it to go well I can’t really sit down with a cup of tea and a magazine because I love magazines that’s kind of where I recharge as well a bit of escapism And actually you can sit down for five minutes because the house isn’t going to fall down if you haven’t dusted, if you haven’t tidied or done the washing. So I think it’s about being kind to yourself really because everybody’s mental health needs that.

Speaker 3
42:36 – 43:21
I just think with me as well I was a bit like oh I’ve got to do this and sometimes you just think well the house as you said is not going to fall down if I don’t do it. I know that was reference to Angelo because he wets the bed every single night or whether he smears or whatever there’s just so much bedding that I wash and it’s just trying to dry for the next day or whatever it is that I’m trying to do because there’s only certain ones that he wants and all of that sort of thing but I found my husband when he um you know when we were going through difficult times or whatever when it was like stressful the best way for him would be like to email me stuff and that was his way of um that this is the way you’re dealing with rather than saying it and that I just thought like sometimes he’d just be sat next to me with a laptop and he’d sort of message me whatever it was that he wanted to say to

Speaker 3
43:21 – 43:35
me but that was a way of dealing with it but at first I thought what is his problem I’m just sitting next to him why can’t he just say to me but then I thought all right now okay this is it. But that’s just the way our life is, isn’t it?

Speaker 2
43:35 – 43:47
Yeah, and I think as well from the outside world, someone else would go, what? Your husband sits next to you and emails you. I’m literally sitting and nodding my head. I remember a while ago, I was trying to come up with something for work and Kelly just walked out and left the room.

Speaker 2
43:47 – 43:55
And it’s once we knew he was autistic and he went upstairs and I was like, are we done? He was like, yeah, literally can’t do anymore. So, OK. And then he just started WhatsApping me some ideas.

Speaker 2
43:55 – 44:12
And I was just like, I was downstairs at the kitchen table. We live in a townhouse, so our sitting room’s in the middle floor. from an artistically friendly point of view, it’s actually quite good because you’re physically sort of away from everybody else if you go upstairs to the sitting room. And I just laughed and I just thought, you know, I really love that.

Speaker 2
44:12 – 44:16
And he was still inputting, but it was via WhatsApp from the sitting room.

Speaker 3
44:16 – 44:39
Okay, so can I ask you Kelly, has being diagnosed with autism changed the way you look at life or is it just you’ve always been autistic but you just didn’t know it, if you know what I mean. So are you sort of looking at life differently now? I know it’s obviously different now because of everything that’s going on but What would you say?

Speaker 1
44:39 – 45:16
Yes, it’s a good question. I think, yeah, I’ve obviously always been autistic, but as you say, you didn’t know it, so maybe, you know, I had certain traits, I would say things, I would do things, I’d make certain decisions, and looking back, a lot of things maybe that I did, decisions I took, particularly around things like my career, would certainly, I would have taken a different path, because looking back, sales and marketing wasn’t particularly, probably, the kindest career to go into as someone who’s autistic. So I would definitely have made different choices through my life.

Speaker 1
45:17 – 45:39
And I guess now it’s, I guess me being diagnosed is a huge sense of relief that I now know that some of the things that I struggled and challenged me and maybe, you know, I did or said things and then I heard people comment about what I’ve done or said. And I think that wasn’t what I said or how I said it or what I did. that kind of now makes sense.

Speaker 1
45:40 – 46:09
So now it helps me really manage what I do and how I do it. It allows me to slightly, I guess, unmask in certain situations, but I’m aware that I do and say certain things because of my autism, not to make an excuse, but it allows me to understand maybe certain situations I can take myself out of because I know it’s not the best situation to be in. or if I’m invited to a certain event, I think, you know, no, I’m not going to go.

Speaker 1
46:10 – 46:41
I’m not going to spend, you know, two hours having small talk, the same five minute conversations with 30 people because I really can’t be bothered. But B, it’s really not, you know, it could use my time and I know I’ll be exhausted. I think the big thing for me now is, you know, and I’m nowhere near understanding, I’m not sure if I will be, but it’s who is the real Kelly, if that makes sense. because I guess I’ve been masking so long and most of my life I think a lot of things I do are learned behaviours.

Speaker 1
46:43 – 46:55
They’re behaviours and ways of doing things that I’ve copied from other people or mimicked because I’m like oh well that’s how you do it or that’s how you say it or that’s what you do in that situation and I think that’s… Can you give me an example? Sorry?

Speaker 3
46:56 – 47:01
Can you give me an example? Only because of people listening in thinking oh…

Speaker 1
47:02 – 47:29
in silly things like I’ll be sitting on the sofa and I’ll be watching a program on TV, a movie or something, and somebody will say something, I’ll go, that’s great, so I’ll make a note of it. And then I’ll use that in a business meeting. And things where I think, wow, that makes perfect sense. That’s how I feel, that’s what I wanted to say, but I didn’t quite know how to put it into a sentence.

Speaker 1
47:29 – 47:47
And I think that now sums it up perfectly. So that’s kind of just one silly example of some of the things I would do just to kind of help me in certain situations or I’ll hear somebody in a conversation say something and I’ll go I must remember that because that’s a really clever way of saying it.

Speaker 3
47:48 – 48:07
We’re nearly coming to the end of the show and it just seems to have flown by, so I just wanted to say that if people wanted to contact you or ask you any questions about, you know, some of the things that you’ve been chatting about today and about Perfectly Autistic, where would they find you?

Speaker 2
48:08 – 48:29
If they come and find us at perfectlyautistic.co.uk, that’s probably the best place because from there it’s got the Facebook group, it’s got us on Twitter, etc. They can drop us an email or send us a Facebook message, however they like. And then you can also join the Facebook community through the website as well. So yeah, perfectlyautistic.co.uk.

Speaker 3
48:30 – 49:11
Oh thank you and I just wanted to say to everyone if you missed any of my chats with Casey Ainsworth who’s also married to a gentleman on the spectrum and has a son on the spectrum or Carrie Grant who’s got four children and two of them are on the spectrum. Richard Mylan whose son’s on the spectrum and then I’ve got a future interview with John Paul who’s autistic so he’s going to be talking about life with a son on the spectrum and also being autistic himself. You can find all the information on the charity website AnnaKennedyOnline.com and I just want to say thank you so much Kelly and Hester and Kelly I hope you feel better soon and I really appreciate you taking the time out to speak to me even though you’re not feeling

Speaker 3
49:11 – 49:30
well and I know you had to rush off because pick up your son because of Covid which is going to be in our life it seems like for quite some time so I just want to say thank you so much stay strong stay safe and just keep going and thank you again. Thank you so much.

Speaker 2
49:30 – 49:32
That was really fun. Really appreciate your time.

Speaker 3
49:32 – 49:46
Thank you for stepping in. That was amazing of you. Thank you. So, yeah, everyone, just keep looking after each other and keep looking after yourselves because obviously you are key as well to families of children and adults on the spectrum.

Speaker 4
49:47 – 49:50
So bye, everyone. Thank you so much. Bye. Take care.