[Speaker 1] (0:00 – 0:49)
Hello, this is Anna Kennedy, and we’re talking all things autism. We’re live in Covent Garden, and it’s a sunny afternoon. Today I’m wearing my never give it up t-shirt, and you know what’s lovely?

Lots of people smiling at me, looking at me at my t-shirt. So if you know me really well, that’s something I don’t do. I don’t give in.

I’m always just like pushing, pushing, pushing. So today my guest is Dr Carol Stott. She completed her PhD in the University of Cambridge at the Autism Research Centre in 2001.

She also has an MSc in epidemiology from the University of London School of Hygiene and Tropical Medicine and in forensic psychology and criminal investigation from the University of Liverpool. Wow, that’s a mouthful. Hello, Carol.

Thank you very much for coming along. That’s all right. We’ve known each other a long time, haven’t we?

[Speaker 2] (0:49 – 0:50)
We have indeed.

[Speaker 1] (0:50 – 8:53)
I think it must be about 20 years, is it? At least. Back in the Hillingdon days.

That’s right, yeah, when we set up Hillingdon Manor School. So Carol, talk to me a little bit about, before we go into everything that you do, because you’re obviously a busy bee, who is Carol? Where were you born?

Where are you from? Oldham. Why?

In fact, yes. So I’m a Northerner, although you might not count it quite as Northern as you are. Yeah, Manchester, Oldham.

And I lived there until, in fact, I went to Manchester University. So, yeah. So until I came to Cambridge, I went to Cambridge when I was about 22 or three, I guess.

I was in the North. Manchester United supporter. That’s allowed because I’m from Manchester.

Yeah, psychologist. I did a first degree in psychology and went from there really with an interest in children primarily, I guess, work-wise. So that’s kind of what led me into, eventually into autism.

I also play a bit of guitar. I’m learning a bit of bluegrass. Yeah, it’s fun.

It’s good. So why did you go into autism? So what attracted you to autism?

Because obviously you’re working with children. So what was it about autism that made you think this is the field I want to work with? And within our department, I was about halfway through my PhD and we were joined in our department by Simon Baron Cohen.

So that was a big motivator from the beginning. Simon was my internal examiner as well. And he was hugely supportive.

Very, very good. And I think a lot of his enthusiasm really kind of steered me from specifically thinking about language impairment into autism. And that was about research then.

That was mostly what I did at that time. And then clinically after that and all the time, I suppose, becoming more specifically focused on autism over the years. OK, so you’ve set up a consultancy called Beginning With A.

So tell me a little bit about the consultancy. Where is it? What type of work do you do there?

We’re in Cambridge. It’s really quite small. There’s me and my partner, Gary, who first set it up.

And Gary does a lot of the kind of organizational things, training materials, that sort of thing, database work. And I do the front end sort of stuff. But we also network quite closely with a group of people, with speech and language therapists, with somebody that helps with special educational need, advice, that sort of thing.

So we kind of networked rather than having a number of people in the consultancy. We mainly do training and diagnosis. So I do very little intervention.

I refer people back into the NHS as far as possible, once diagnosed with this diagnosis. So that’s the clinical part of it. And we also do a lot of training of NHS staff, of forensic teams, academics in the UK primarily, but also overseas as well.

There’s a lot of media stuff at the moment about the NHS. So tell me a little bit about the training. So what type of training do you do with NHS staff?

It’s really two measures, two measures in total, I guess. And that is the Autism Diagnostic Interview, which people refer to as the ADI, and the Autism Diagnostic Observation Schedule, which people refer to as the ADOS. And the reason that they, I guess, have become pretty much the gold standard.

There are others, like the disco, which is equally good. So what does that stand for, people listening in? It’s obviously not the type of dance.

I don’t know what the O is for at the end. But it’s very similar to the ADI, and it’s not something I’ve trained in, but it does the same job, really. Now, the two things there, the ADI and the ADOS, are both mentioned in nice guidelines, as the disco is as well.

And it’s from there, I think, that people have really demonstrated an interest in becoming trained, and there’s been a big move towards diagnostic training. So it’s on those two things. We imagine at the beginning that actually we’d be training, perhaps, in a broader range of things, or perhaps IQ-related stuff, but it’s been diagnostic measures the whole time.

Okay, and what type of NHS staff, what roles do they have? They very hugely, really, but speech and language therapists, pediatricians, psychologists, clinical psychologists. We get nursing staff as well.

And sometimes non-diagnostic people, so people who are learning how to understand the measures, I suppose, and helping the multidisciplinary teams that might not diagnose themselves. Forensic teams, we see, and we tend to go quite a lot to the teams rather than coming to us, which is what we’d imagine at first would happen. So what happens is people contact us and say, could you come up to wherever their site is?

So prison staff, we’ve trained as well. Lots of NHS trusts have had us in doing work with them. So how long does the training, so how long is it?

Say, for example, some professionals might be listening in and think, oh, I’d like to tap into that. Number one is, where would they find you? So what’s your website, and how long is the training?

Well, it varies a little bit. The website, first, let’s say that, is beginningwitha.com, so www.beginningwitha.com. So capital A.

Say again? Capital A. Capital A at the end.

I don’t think it matters if you don’t put it, but the thing to be careful of is the Gs and Ns in the beginning would be a bit of a challenge. But that’s where we are on the web, and people come to us in Cambridge. We do run courses in Cambridge.

We also deliver courses for Hoggrapher, who are the distributors of the measures, so the people that distribute the test distributors of the measures. And we train for them in Oxford, and we train on behalf of Andrew Sims, who are an NHS organisation, in Leeds. So we kind of vary our venue in that respect amongst those three, as well as people sort of asking us to go up to them for specific type of things.

And it varies, I guess, one of the courses that we do in Cambridge is a five-day course, because that covers both the ADI, the interview, and the ADOS, so people get trained on both. That’s five days. The ADOS on its own is four days, and the ADI on its own is three days.

And the reason we can do the combination one in five is that there’s a lot of crossover. So what are your thoughts about private and independent versus NHS diagnosis? And I’m saying that because quite a few parents, obviously I’m interested in diagnosis because obviously we did a survey as a charity, and on average people wait in five years, which is horrendous.

But then you’ve got parents who will say, oh, I might go for an independent diagnosis. And then they’ve got other parents that will say, no, I don’t want independent because they don’t value them within the NHS. So what’s your opinion?

Well, I think first of all, the demographics changed over years. I think that now people who are seeking independent diagnostic assessments are not the worried well of the 20, 30 years ago. They’re people who are desperate, really.

And it’s unfair, I think, often, that they have to go to those lengths, really, and that amount of cost that it incurs to them. But on the other hand, I think people should be reassured that it counts and it holds as much weight as an NHS diagnosis. And I hear lots of times people saying that it won’t count.

And even once I’ve given a diagnosis, sometimes we’ve had local authorities say to them verbally, it doesn’t really count. We don’t really count if it’s not the NHS, we don’t count it. Well, it’s actually unlawful to say that.

That’s what I was thinking myself. You’d never say that to a cardiologist, would you?

[Speaker 2] (8:53 – 8:53)
No.

[Speaker 1] (8:53 – 12:02)
Sorry, your roofer doesn’t count. But you know, so what we’re very strong on saying, well, if that said to you, get that in writing, ask them to put it in writing and to justify their decision. They never ever have put it in writing, which kind of indicates it’s not something that they’re allowed to do, really.

But supporting parents in following that is important, I think, because clearly, you know, the first issue is having to pay. We try very hard to keep our costs down. And I’m quite proud of the fact that I think we do quite well on that count.

But the last thing someone wants is to go to that expense and then to be told, well, actually, it doesn’t count. Or where do I use it? What can I do with that diagnosis, you know?

So, yeah, it’s a double edged sword in some ways, I think. And I think the frustrating thing is that a lot of parents believe that once they receive the diagnosis for their son or daughter, then the support falls into their lap. Because they have it, but then little do they know that that’s not the case.

So basically, once you have the diagnosis, then the battle starts. You might not have to battle. There are some local authorities, not that I’ve heard of many, that basically, you know, are good with support.

But mostly parents then have to battle again, might have to pay out for more reports. So what’s your opinion? Well, I think in terms of the payment, then they shouldn’t.

There’s a movement in some ways to actually coming back to people to get them to pay, to get the local authority to pay for the private assessment. They should think about that, I think. Okay, so really push and don’t take no for an answer.

My motto is if somebody says no, find someone who’s going to say yes. Because and sometimes the parents that speak the loudest or shout the loudest, if you like, not that it should be like that, usually get what they want in the end. You get a lot of parents who really learn the system and they are obviously very passionate about getting the right support for their son and daughter.

And why not? Yeah, if we hadn’t done that for both of our boys, where would they be now? I had two sons, they were at home.

There was nothing for them, just five hours home tuition. Where would my sons be now? So, you know, exactly.

Yeah. So yeah, definitely. So can you just remind people if they wanted to contact you where they would be able to find you again?

Go to beginning with a Google beginning with a or go directly to www dot beginning with a or one word dot com. So it’s for children and adults, it’s for children and adults diagnostic assessment. So what percentage would you say with children and adults that you get?

I guess 70, 30 children to adults. It’s growing. The adult numbers are growing a little now.

It’s going a bit more towards 60, 40, but 70, 30, I guess. OK, that’s interesting. So if anyone’s got any questions they’d like to ask Carol, if you didn’t quite get the website, you can contact me on the charity website and we’ll pass the messages on.

It’s www dot anna kennedy online dot com. You want to leave a message on our answering machine at zero one eight nine five five four zero one eight seven. Welcome to women’s radio station.

[Speaker 2] (12:03 – 12:07)
I’m Sarah Louise Ryan and welcome to Love Lessons Live on women’s radio station.

[Speaker 1] (12:07 – 13:18)
Hello and welcome to future classic women awards with me. Hello and welcome to June May is listening. Hi, this is Anna Kennedy and we’re at women’s radio station supporting women’s wellbeing and we’re talking all things autism.

Women, the possibilities are endless. That’s what makes us different. Hi, I’m Lauren Mishcon.

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[Speaker 2] (13:18 – 13:59)
On the radical wellbeing show you’ll be inspired to kick away the roadblocks and live your life to the fullest. If you’re ready to get radical about your wellbeing, then this is the show for you. At presenters at women’s radio station dot com join me on my show and share my love of books and writing.

[Speaker 1] (14:23 – 17:32)
To find out more and be part of this movement, come check out our website at media matters for women dot org. Hello, this is Anna Kennedy. We’re talking all things autism.

We’re live in Covent Garden and we’re supporting women’s wellbeing. My guest today is Dr. Carol Stott, but before I go over to Carol, just to remind you of the options autism advice sheets. There’s so many different useful advice sheets.

Last week I was talking about food issues, the sleep issues. One particular one that I was looking at this week was parents guide to supporting siblings whose brothers are sisters who have autism. So basically what’s on the website you can share is dealing with challenging behaviors, being the target of aggressive behaviors, feeling that their siblings get away with things.

Not feeling included, lack of attention or jealousy over the amount of time parents spend with the other sibling, being a young carer. And a unique bond to the relationship. Recent studies have also indicated that siblings may in fact benefit from growing up with a sibling with a disability.

I always remember Patrick and Angelo. Patrick used to get a little bit jealous of me with Angelo and it’s because obviously Angelo needs more support. He’s always going to need one to one support.

He has no sense of danger. And there’s one particular thing I might have shared before that we used to go swimming and I can’t swim. So Angelo can’t swim either.

So we used to be in like the smaller pool where the children were. And then Patrick, as soon as he got his goggles, he was aware of the swimming and then he shared with me one particular day. He said, why is it when we go swimming that you used to use, hold Angelo’s hand, but you didn’t hold my hand?

I said, because we can’t swim. You can. He said, it’s not that you love him more than me.

I went, no, it’s not your golden boy. I said, no, I don’t have a golden boy. I said, you’re both the same to me.

It’s just Angelo needs more support and we have to keep him safe. But obviously he’d been holding on to that for quite a few years. So thank you, Carol, for coming along today.

So we’re going to talk a little bit about what you see is the difference between males and females with autism in children and adults. Well, certainly in my own clinical work, I still tend to see more males and females, but there’s a catch up going on. Yeah, because there’s a lot of information out there on females and masking and all those various issues.

But one thing that I think is really consistent is that, and I don’t know whether it’s a referral bias to me, the way people get referred. I’m not sure, but certainly girls tend to get referred later.

[Speaker 2] (17:32 – 17:33)
So they’re older.

[Speaker 1] (17:33 – 17:38)
So how much older are you looking at? Thirteen rather than eight. Oh, okay.

It’s a teenager.

[Speaker 2] (17:38 – 17:38)
Yeah.

[Speaker 1] (17:38 – 21:47)
Okay. Yeah. And, you know, in a sense, I guess the people are referred to me because they’ve been waiting for an NHS assessment.

So I tend to see, I do see children really, really young as well, but I do see children that have been waiting a little while. And it tends to be around eight or nine that people are really pushing for an assessment for boys, tends to be 13, 14 for girls. I don’t know whether there’s a sense, you know, the work that people are doing on camouflaging, how girls and women are more able to camouflage their autistic-like behaviours and seem kind of more able to fit in a little bit.

It’s an exhausting process, is what they tell me. Whereas boys either are less able to do that or are less concerned about doing that, maybe. I don’t know.

So what do you think the ratio is then to boys to girls? I think it’s a lot closer than we’ve felt for a long time. I think more like, I don’t think it’s 50-50 currently, although, you know, who knows, really?

If we look at the evidence, the evidence is always kind of 10 years out of date in a sense, by the time something’s published and all of that. But the evidence is suggesting now that it’s a lot nearer, you know, 50% than it used to be. It used to be four to one, was what people said.

It’s more than that now, I think. Closer than that now. Can we just go back to diagnosis and the length of time people are waiting?

So people that are coming to you, what sort of length of time? Because obviously they’re desperate to come to you because they can’t get it through the NHS. Absolutely.

It can either be that they haven’t been waiting but have been told that they would have to. And that is sometimes around two years people are told. For other people, there’s been a lot of people that I see who’ve kind of gone from pillar to post, felt that they’ve not had a full diagnostic assessment.

Or that it’s not really been confirmed properly. So there’s been, autism’s been the kind of narrative, there’s been people talking about it, but it’s not been confirmed and written down anywhere. And to actually get that process in place can take, absolutely, can take two to three years.

So if somebody’s listening in and they have a child and they feel there’s a possibility that they may be on the spectrum, what’s involved in an assessment? What actually happens? Certainly what we do, and this is pretty close to what the national guidelines for practice, a good practice are, is that what we do is an initial screening period.

So we ask parents if it’s a child to complete a set of questionnaires. Other cover, speech and language, general behavior, autism-like behavior specifically, and sensory issues. So a range of things that have resonance for autism.

Background history, would you look into that as well? Not at that stage, no. Just at the screening stage, they complete all of these.

Now, the way that we do, it isn’t as a filter. We don’t screen in order then to say, well, we’re not going to see you on the basis of a number. But, you know, we’ll then take it back to the parent and talk it through and suggest, obviously, there’s no indications that it would be worthwhile, then we don’t continue.

But it tends, in the end, because of the way people come to me, it tends to function as a pre-diagnostic information gathering. So that by the time I see them, I’ve got some sense of what, perhaps, their problems have been and so on. And at that point, then we do, for our developmental interview with somebody that knows the child well, and that’s usually the parent.

And we then, and that’s the ADI interview that we do, the Autism Diagnostic Interview. Following that, I’ll see the child for the ADOS, which is the Autism Diagnostic Observation Schedule. And I also do a general ability test because we’re now tasked with differentiating between learning disability and autism as well.

So I’ll either do a developmental test, if it’s a very young child, or a general ability test. Then adults, very similarly, really, we, then they get a set of questionnaires. The set of questionnaires is completed by them and by somebody who knows them as well.

[Speaker 2] (21:47 – 21:48)
And then they come along.

[Speaker 1] (21:48 – 28:57)
Would you get somebody just in, because I know some adults would like to go on their own, they don’t want anyone with them, I’ve spoken to someone, they don’t want, so how would you sort of tackle that? They just get a set of questionnaires themselves, and then I’ll see them. It’s far better to have somebody, it doesn’t necessarily have to be somebody that knows them from birth.

And that’s an important point really, because that changed in about 2013 with the new diagnostic criteria, which say, if you can’t get that information about somebody developmentally, you can still now diagnose. So long as there’s no positive evidence to say that their development was typical. So if there aren’t people around, which often for adults there aren’t, or like you say, maybe people don’t want that contact reinstated, then you can go ahead with current presentation.

But it’s still better to have somebody else comment on the person as well, partly because sometimes people with an ASD don’t necessarily have the insight into what the difficulties are. And so somebody helping them with that, quite often I’ve had people absolutely genuinely saying, oh, it’s fine, I’ve got lots of friends really, it’s okay. And their partner saying, no, actually, we don’t think you do, and so we have a discussion about that.

I was going to talk to you about partners as well, because sometimes I’ve met couples where the wife might say, oh, I think my husband’s on the spectrum, so I was just wondering, do you ever get couples that come in to see you? Yeah, I do. And what I also sometimes have happen is that a parent will come to talk about their child.

We go through the ADI, which is something like 103 questions, a real detailed stop. And then they realize what autism is. And then they’ll say, oh, actually, that is a little bit like me, or maybe a little bit like my husband or my wife or whoever’s come.

And yeah, and that often prompts them then to look into things a little bit more for themselves, too. So if somebody comes along to you, who obviously may be on the spectrum and they find the whole process a little bit daunting or overwhelming, would you give them time to sort of, you know, go away for a little while and come back? I was just thinking, because that 103 questions as well would be a lot for somebody to complete.

Yeah. And particularly for adults, you see, the adult part of it is a little bit difficult because the ADI is designed for a third party informant. So it’s not really meant to be used with the person themselves.

So in that context, absolutely. I would talk with the person themselves, just talk about what it is that is either concerning them or is we talk about their strengths, obviously, as well. And the difficulties that they might be having, which usually they are if they’re coming for a diagnosis, usually because something is causing problems for them.

So we don’t launch into the kind of formal framework of the interview. So what about the North-South divide and how are you finding it when speaking to people as in what’s a good area to live in? You’re going to get a diagnosis and it’s not going to take a million years.

Well, it’s so variable. I don’t think there is in a sense. I don’t think there is a North-South divide.

I think there’s almost a random difference between various either local authorities or NHS trusts and things. One of the differences that we find is in whether the person is referred and then seen, either by pediatrics or by CAMs. And the CAM services, the Child and Adolescent Mental Health Services, are beginning not to do as much diagnostic work now with autism. They do with other things, which means that pediatrics are taking the burden of the workload, if you like, and they don’t see older people.

So what you tend to get is differences in where girls are diagnosed too, because girls at 13 years old would be less likely to go to a pediatrician, if that makes sense. So briefly, why do you think there’s so many people with an autism spectrum condition now or is it just this better awareness raising? I don’t think it’s just better awareness.

I think better awareness is a big, big issue. Of course it is. We had a clinic in Cambridge for people with Asperger’s Syndrome that we set up and the prevalence went up.

Of course it would. Better awareness, but other things as well, which it’s not clear what those things are, and it might be a small minority, but there are other things that don’t seem to quite fit the figures. A bit of both, I think.

So can I just very briefly as well, once someone’s diagnosed with autism, would you be able to pick up any other overlapping conditions? We do quite a lot of cognitive assessments for specific learning disorders, but things like ADHD, attachment related issues is a big one. That’s something that we look at.

So if people are interested, again, just to remind people who might have just tuned in, what is the website address and are you on social media? www.beginningwitha.com is the website. I’m on Facebook.

My professional page is carolestotphd and that’s my Twitter handle as well. I’m beginning with A. And again, you can contact us through the charity website if you’d like me to ask Carol any questions if you’ve missed out.

Thank you. Welcome to the Women’s Radio Station, supporting women’s wellbeing. Women’s Radio Station is all about diversity from opinions, career, ethnicity, education, and most importantly, women’s wellbeing.

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We’ll examine the highs and lows of motherhood and make sure you laugh out loud as we take on this challenging role together. With spoonfuls of advice, incredible stories, it will be refreshing, honest and funny look at being a mum.

[Speaker 2] (28:59 – 29:34)
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Women’s radio station, supporting women’s wellbeing. Hello, this is Anna Kennedy. We’re talking all things autism.

We’re live in Covent Garden and my guest today is Dr. Carol Stott. Just a reminder that we’re still looking for talent out there, so show us your talent. Autism’s got talent.

The roadshow is going to be happening on October the 12th at the Winston Churchill Theatre, but we’re looking for local talent. So whether you’re a singer, whether you’re a dancer, whether you’re a musician, whether you tell jokes, whether you do fantastic artwork, we want to hear about it. So please send in your entries.

The closing date is at the end of this month, the end of August. So please send them in to www.annakennedyonline.com. You’ll see the events page and you’ll check out Autism’s Got Talent and there you can send us in your talent.

So we’re really excited that next Monday on the Katie Price, My Crazy Life highlights from the Syn Ive show will be shown on Monday at 10 o’clock. The last piece had about one million and a half views. I’ve had so many people contacting me that they’d like to enter for next year for the main show in London.

So it’s all very exciting stuff and we’re very proud of our Autism’s Got Talent. So today my guest is Carol. Carol, please can you let me know about what sort of training are you involved in with Beginning With A?

OK, it is almost exclusively, it probably is exclusively actually, the ADOS, which is the Autism Diagnostic Observation Schedule, and the ADI, which is the Autism Diagnostic Interview. And the ADOS is the one I think we do a little bit more of, I guess 70, 30, quite a lot more. The ADOS is an observational schedule which varies according to the age of the person that you’re assessing.

So there’s a toddler module for very young toddlers who are not verbal yet. So what, are young 18 months? Yeah, well actually from 12 months.

From 12 months up to 30 months. Now I rarely see anybody younger than about 18 months actually, but it would be possible to do the toddler module. And then there’s a second module, module one, which is for children and adults in fact, who are non-verbal but older than toddlers, so 30 months and older.

But that’s for people who are single word users, limited speech. Then there’s a module two, which is phrase speech, module three, which is for fluent children, and module four for adults. So of course people using the ADOS have different needs depending on which services they’re working.

And the way our services work in the UK, certainly in the NHS, is that you tend to work, as you know, you tend to work with one particular age group rather than across the board. So we do a lot of different sorts of trainings focused on the particular needs of that group. So people who are working with the early years will do things that focus on the toddler module, for example.

People who are working with adults, we focus on the module four. People who are working with adults who have a learning disability is a little bit more of a challenge, who perhaps are non-verbal or less verbal. We’ve then got the challenge of using what ostensibly was a measure designed for children, but with adults.

And we do a lot of work on how you would change that, how you would adapt that for use with non-verbal adults, even though the expectation was they’d be children. And I just thought something that’s like, bugs me. I suppose I should really know it.

When Angelo was born, obviously, he passed all of his milestones. He was walking, talking, eye contact, everything. And then it just went away.

And it’s like, for me, it’s just like, obviously I know that children can be diagnosed at 18 months, and now you’re saying 12 months to me, but why is it? I know it’s obviously a developmental condition, but what I don’t get is he had it all, and it was just all taken away from him. And it just like, I know he’s 26 now, but it’s really bugs me as if to think, why is it that it’s there?

And then it just goes. Yeah. Yes.

It’s very painful as well, isn’t it?

[Speaker 2] (34:01 – 34:02)
It is painful.

[Speaker 1] (34:02 – 41:11)
We don’t know, really. I mean, there are lots of different sorts of presentations that maybe are associated with illness sometimes as well, with viral infections, with all kinds of things like that, that the child appears to regress. But there are a lot of children for whom there’s not been anything like that, whose development appears to be quite normal, quite typical, and then they begin to regress.

Soon after, single word speech has begun to develop. What we often find is people reporting that their child’s been speaking and then lost speech. So you’ve got some current interests that include the experience of people with autism in the criminal justice system, from offending, arrest and interrogation, trial, sentencing and custodial sanctions.

You’ve been acting as an expert and professional witness. Can you tell me a little bit more about that? Yeah, of course.

Yeah. OK. Well, the reason I am involved in all those stages, really, is that people, it’s with people with autism that I work as expert witness advice and so on.

And people with autism can be involved with the criminal justice system, of course, at any of those stages. And there are different needs that they have at each of the stages. And I think sometimes also, as is the case in other professions too, the professionals need some support.

The professionals need to understand a little bit. So if you think, first of all, about the stage of interrogation, and that’s not even the beginning, the potential offending behaviours even before that. But thinking about interrogation and understanding really for a police officer to understand that a person with autism will perhaps not look at you, will look away when questions are being asked, will look down at the ground, will say what they think you want to hear.

All looks like guilt. All of those things are what people who are guilty do. And it’s often misinterpreted by an interviewing officer, and they’re getting much better at it now, the training’s better.

But it’s often misinterpreted that, well, that person’s guilty then, you know, they’re just people confessing. People with autism will quite often confess to get out the room. The sensory issues that are going on around them.

I was just going to say there must be a lot of sensory issues. And it is for everybody, of course, in a situation where you’re being interrogated, it’s not the best place to be. But for somebody with autism, it’s that and more.

And it’s understanding that that behaviour isn’t an indication of guilt in the first place, that the person will need some help in understanding the questions, being asked questions in ways that use irony, or these sorts of things that people with autism don’t really understand. So at that stage, that’s kind of what I do. And then later, in preparation for the trial, you know, understanding if there’s going to be a trial, understanding that the person with autism may well have other difficulties with reading, with the written word, with these sorts of learning, specific learning disorders and things, where they won’t be as able to easily help the solicitor or the barrister present their case.

So quite often advising that you need an intermediary, not just in the court, but an intermediary, somebody to help the person with autism, help the solicitor to build a case for them. So what sort of crimes, obviously without giving personal details, what sort of things are you expert witness for? I’ve done a fair bit on people with potential sexually offending behaviours.

And some of that is really quite difficult, because again, you know, with social media now, we’ve got people with autism who are not understanding, you know, being accused perhaps of grooming behaviour, when in fact, for some of them, not all of them, but for some of them, it’s about not really understanding the age differences and how important that is. People with autism often choose to have friends who are younger than them. So if you get a 17 year old boy and a 14 year old girl and begins to get a little bit unsafe, vulnerable from both of their points of view.

So I do get quite a lot of that kind of work, but also other kind of just normal sort of offending behaviour, rather than normal, but run of the mill, general offending behaviours really. Where the criminal justice system is needing support in understanding, in helping that person get a fair trial. Have you seen an increase on mate crime?

And what? Mate crime, as in they’re sort of left to hold a baby, if you like. I’ve spoken to autism together and they have many people where, say for example, they’re not very good at making friends, they go in the wrong crowd, and then obviously they might commit a burglary or whatever, and then they get away with it and they’re left holding their guns, I feel like.

Yes, absolutely. So yeah, that’s what they’re saying. There’s a big increase of mate crime.

So I was just wondering, as an expert witness, would you sort of tackle anything like that? Not directly, no, but I can see that that would be, yeah. Again, it’s an indication of vulnerability, isn’t it?

And that’s where people with autism are struggling. Yeah, I went to a woman’s prison in Leeds and it was very interesting. I was invited and there were quite a few people on the spectrum that were in the prison and some reoffending so that they could go back in the prison again because they liked the structure of the prison and they didn’t have a supportive family.

So the lady that I met there, as the Equality and Diversity Officer, she’s no longer that now, but she was talking to me about all the work that she’s been doing in the prison. It was just some really amazing stuff, but really opened my eyes, as in I never even thought about people reoffending to go back into prison because they felt almost like the prison was their family, if you like. It was a framework as well.

Because people, the prison officers and with the best intentions, of course, often, are not really understanding what someone with autism likes, dislikes, what their preferences are and what kind of things raise anxieties in an unusual way. So quite often, I’ve done work with people to advise that if you want to help somebody cooperate with a treatment intervention or risk reduction, don’t reward the person with autism with social time. That’s not what they want.

And it’s that kind of education as well. So not just with the people with autism themselves, but with the staff around them is quite a big thing. Are you doing any research at the moment that interests you?

One of the things that might be, yeah, is something to do with the forensic system. What I did when I did my MSC was put together a short questionnaire, which is aimed at helping police officers and, again, people at the early stages of the custodial or the criminal justice system, look at risk. So we’re looking to do that with my colleague Fiona Scott, who’s now in Newcastle.

So we’re looking at whether there’s some mileage in researching that measure, a little bit more than what I did for my MSC. OK, I’d be interested to hear about that. I’m going to visit a prison in September in Kent and they’re looking at the autism reality experience, which I don’t know if you’ve seen the bus, where people can experience what it’s like to have sensory overload.

[Speaker 2] (41:11 – 41:11)
Yes.

[Speaker 1] (41:12 – 41:33)
The first responders and they were really quite overwhelmed. And also it said it makes them think about how they approach people now with all the sensory stuff that’s going on around. So yeah, so that’s it.

Be interested to see how different it is from a woman’s prison into a male prison. Obviously, it’s going to be slightly different.

[Speaker 2] (41:33 – 41:34)
That will be interesting.

[Speaker 1] (41:34 – 42:03)
Yeah. So again, if people want to contact you, just to remind everybody of your website details and your social media. www.beginningwitha.com is the website. And Carol Stop PhD. So Scott S.T. or Double T. S.T.O.T.T. Yes. And B with A is my Twitter handle as well as Carol Stop PhD. All right. Thank you very much indeed.

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[Speaker 2] (42:03 – 42:07)
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[Speaker 1] (44:24 – 49:31)
To find out more and be part of this movement, come check out our website at mediamattersforwomen.org. Hello, this is Anna Kennedy. We’re talking all things autism.

We’re supporting women’s wellbeing and we’re live in Covent Garden. My guest today is Dr. Carol Stott. And I just wanted to remind you about the Autism Hero Awards.

We are getting so many nominations at the moment, but the closing day is going to be September the 6th. So if you want to nominate somebody that goes the extra mile, so it could be a teacher, could be a carer, could be a parent, could be a journalist that writes particularly well. It could be a psychologist like Carol or psychiatrist or whichever person that you feel has really helped you and go the extra mile.

It’s a fantastic event. So basically what happens is 36 finalists are shows and three from each category. There’s 12 and they all come down to the Chelsea Harbour Hotel in November and the winners are announced on the night.

It’s quite an emotional roller coaster in the evening, but such a lovely event. And we have one of our Autism’s Got Talent performers is going to be singing for you to entertain. So please send in your nominations and it’s www.autismheroawards.com.

So as I said, my guest today is Dr. Carol Stott. Carol, tell me what do you think are the critical issues in autism spectrum condition right now? We’ve been talking about diagnosis.

Was there anything else that you feel that is quite critical? I think so much of it is underlined by the numbers. I think we’re really in crisis actually in terms of diagnosis and treatment afterwards or intervention or help.

Do you think it’s to do with the cuts? Yeah, I think it’s to do with the cuts. And I think it’s to do with a system that’s trying to cope with something that is not culpable within a sense.

That’s to do with finance, largely to do with finance. And I think what sometimes is happening is that perhaps understandably things are being spread out a little bit beyond the expertise that should be there. And quite often I’ll get, for example, stories of parents who are being told, no, there’s nothing wrong.

Child doesn’t do this in school. It must be you. That sort of thing.

And what seems to be happening quite a lot, I think, is that there’s misunderstandings about things to do with attachment disorder. Attachment issues is usually what people refer to rather than attachment disorder. But almost like a child who is being very negative about school, refusing school, not wanting to go into school, people are, educators really, are saying, well, that’s attachment disorder, that’s separation anxiety, all that.

And it’s becoming a little bit dangerous, I think, you know, that quite often, and it’s because the system is overburdened in a sense with the work it has to do, not being overburdened with the people, overburdened with the work that has to be done, that we’re not coping. And so in order for some help to be directed towards them, I think, there’s, we know that that person’s not going to be seen by the NHS for a good few months, if not years. And so there are explanations coming in from people that perhaps aren’t really tasked with doing that.

And it’s not that they don’t have expertise, it’s that they don’t have that expertise. That’s the problem. And I think that’s a huge problem.

I think social services are seeing consequences of this, where social services are being asked to visit families for whom there’s no concerns whatsoever. I know I’m actually speaking to somebody at the moment who’s a family very concerned about social services coming into her house, about her children being taken away from her. I’ve spoken to parents where they have got saying, oh, you must have one chance and buy a proxy.

And I’ve asked on the increase. And I know a parent that basically went to social services because she felt like she was drowning. She asked for help.

And what they did was they took her kids away from her. And she thought, why did I go to them for help? Because they think they’re going to get help.

And I think it’s a little bit like we were talking about earlier, about things being seen in the wrong context. So where we said about police officers seeing the lack of eye contact and not looking at the person looking at the ground and so on, indications of guilt. A lot of things that children with autism do are things that children who are neglected do too.

But children with autism haven’t been neglected. It’s just that that’s the sorts of things that they do. And I think the assumption then is that if a child has a difficult attachment, which many children with autism will, then there’s an assumption that that’s to do with poor parenting and it’s not.

And I think that’s what a big, big issue for us at the moment is. People have the best intentions.

[Speaker 2] (49:31 – 49:31)
Yeah.

[Speaker 1] (49:31 – 53:20)
You know, it’s obviously could be very stressful once your son or daughter has been diagnosed and you have to navigate a system that’s quite complicated. And obviously it’s not just that you’re looking after your son, you’re trying to hold down the job, maybe. Some parents have been told they’ve got to pick up their kids at lunchtime at school because they’re not coping.

So they’re giving up their job if they can’t find somebody to look after them. So it can be quite stressful. So parents need to look after themselves because they’ve got so many different hats.

And that’s why I’m always talking about looking after yourself. And I know it’s easier said than done, especially if you’re a one parent family. I know some parents have got four or five children that may be on the spectrum.

So what sort of tips can you give to parents as in whether they’re couples, as in if they might be a father, they might be a mother on their own. I have spoken to many fathers where the mother can’t cope and off she’s gone and the fathers help, you know, basically looking after the children. So what sort of tips can we give parents to help them keep saying, if you like?

Yeah, I think that the point that you made about giving time to themselves is hugely important. Make yourself do that. Absolutely.

And it’s hard to do sometimes, but it’s like on the aircraft, isn’t it? You put the mask on yourself first, do that and make your voice heard. You know, people like you make your voice heard to people like you who can make their voices heard.

Therefore, on behalf of people with autism, there are autism awareness groups out there. The stuff that you’re doing, make the voice heard is something that I would say. I would say try and find a support group close to you.

And sometimes it’s hard because I remember when I first heard about my boys in nineteen ninety seven, there was a support group. But basically it closed down because the parent couldn’t cope with looking after her kids and doing the support group. So there was just nothing.

And I felt really isolated because obviously I’d moved from Middlesbrough. I was from the northeast and I’d come to London. I didn’t know anyone.

I just felt so isolated. My husband was studying at Brunel University. So but then in the end, I bumped into another parent.

And that’s how we started the support group. And it just sort of grew and grew. But I think you need to find somebody.

Facebook, I think, is pretty good as well. You can meet lots of different people on Facebook. And I know Mary, when we did the SEND National Crisis Walk, we went to London, we went to Parliament Square.

There was quite a few parents there that had never met, but they’d spoken on social media and on Facebook. And what was lovely to see was like I was watching them. Oh, you know, they put a face to a name and they were giving a hug.

And it’s looked like they’d known each other for years when they’d never even met each other. So those are the sort of things. And I know sometimes people are worried about sharing information about worried.

But do you know what? It’s good to talk and get it off your chest. I think so.

And also share strategies, things that might work for you. So just say, you know, like I said, on social media, Angela’s ex was quite bad at the moment. Someone popped up and said, I’ll be trying to scream.

And it’s good because then you’re sharing sharing information. So what do you do? What do I do to relax?

Because obviously you’re a busy bee and you’re travelling here and there and everywhere. OK, I do read a lot. I read a lot of trashy novels.

OK, I do that. I think like Rubbish Telly’s good because I can switch off. Pinky Blinders has come back.

That’s good. Yeah, OK. I watch a lot of Netflix.

I play music. So I’m learning to play guitar again after playing it rather badly as acoustic or electric acoustic. And bluegrass guitar, which is kind of what’s happening.

I suppose most people would recognize it as kind of like a Maricana, although the bluegrass people will not be pleased that I said that. But most people would recognize it. It’s kind of American folk sort of.

But it’s very distinctive. So it’s distinctive by the instruments that are used in the bands. Right.

And there’s all kind of wars about what counts as proper bluegrass or doesn’t.

[Speaker 2] (53:20 – 53:21)
OK.

[Speaker 1] (53:21 – 54:31)
Careful. But things like a bluegrass band would have a banjo, a fiddle, a mandolin, a double bass, a guitar and sometimes a dobro. And it’s the combination of instruments often that make it bluegrass.

So do you do public appearances? Occasionally. Yes, occasionally.

We had a little band up until about a year ago with my partner, Gary, and his son David and our friend Phil. And then David went off to do research in the States for a little while, so it fell apart a bit. But yeah, we do a bit.

We do a bit. We go to a lot of festivals. We go to a lot of bluegrass festivals in the summer.

And we do each year, we do a week of it’s called Saw Fingers. And it’s a week in which you’re tutored by real expert bluegrass folk on whatever instrument you choose. So you’ve got this mentor who does that.

And it’s public school in Oxfordshire. OK. So they’re in the public schoolboys place, which is great, too.

So what instrument does your partner play? He plays guitar, banjo and currently dobro. He’s playing dobro.

What’s a dobro? It’s a slag guitar. So you have it like on your lap.

And your hands go, I’m doing it.

[Speaker 2] (54:31 – 54:31)
Oh, yeah.

[Speaker 1] (54:31 – 55:19)
But you go up and down it on your lap. Oh, I didn’t know that was coming. Learn something today.

Yeah. So definitely make time for yourself. Make time for yourself.

And don’t be afraid to make your voice heard. You know, don’t be told. No, you’ve been before.

Don’t come again. Keep going. Keep fighting.

Do what it says on your T-shirt. Yeah. Never give up.

Never give up. That’s very true. So do you get a lot of parents who basically they just look like they’ve lost their merger, if you like.

And do sort of encourage them and just say, come on, you know. Yeah. Yes.

And I think you see, in a sense, the people that I see have found their mojo again a bit. And that’s why they’ve come back to me. I think there are a lot of people out there that need that support that don’t quite know where to get it.

Go and find it. Seek people out. As you’re saying, use social media and get back in the fray, I think.

[Speaker 2] (55:20 – 55:20)
Yeah.

[Speaker 1] (55:20 – 55:38)
There’s lots of useful information on social media, especially on Facebook. Twitter is great for networking. And again, you know, if there’s something you don’t know, just put a question out there and just say, can anyone help?

And then you’ll see everyone just comes together and supports you and gives you some advice. So I’d like to say thank you very much, Carol. That’s right.

[Speaker 2] (55:38 – 55:39)
Thank you.

[Speaker 1] (55:39 – 58:59)
And I hope it’s not going to be another God knows how many years before I see you again. And keep playing your bluegrass. I’m definitely going to look on your social media page to see if I can see what you’re doing there.

Again, just to remind you that next Monday at 10 o’clock, Katie Price, My Crazy Life on Quest Red TV, you’ll see highlights of Autumn’s Got Talent, where Harvey, you’ll see him play his organ, which I didn’t know that he could do. And he does it very, very well. So we’re excited about that.

If you want to enter Autumn’s Got Talent, please send in your entries and check out the charity website, which is www.annakennedyonline.com. Just to remind you again about the Hero Awards, there’s 12 different categories, and then I will be choosing a special recognition award. So again, if you want to nominate someone, it’s www.autismheroawards.com.

We’ll also be announcing the date of our expo, which will be happening in March at Brunel University. We’ll be in our fourth year where speakers come together, clinics. People can get free advice, whether it’s speech and language, occupational therapy, legal advice.

And then again, it’s another opportunity for you to network and meet other people. So thank you very much again, Carol. And just to remind everyone what your website address is, it’s www.beginningwitha.com.

Thank you very much, and goodbye, everyone. Speak to you next week. I’m Tamina Zaman, founder of Empower and Enrage.

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

Many women want to be smarter with their cash, but just don’t know where to start. At empowerandenrich.org, you will find a host of options to help you take charge of your finances and learn how to put your money to work for you in an easy, affordable way. Get in touch with me at empowerandenrich.org, and let’s change your future together. Hello, my name is Natasha Ann Callaha. Welcome to you lovely lady listeners of your very own women’s radio station. Over the coming months, I’ll be doing a survey and big brand coffee shops interviewing customers asking why they like to drink coffee and if they would like to give us a health tip for our listeners.

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[Speaker 2] (59:22 – 59:25)
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