Adult Autism Diagnosis: Signs You Might Be Autistic and What the Process Involves

Dr Marianne Trent (: 00:00

Have you ever wondered if the way you've always felt overwhelmed, socially drained, or like you're speaking a different language to everyone else, could perhaps be an indication that you are autistic? For so many adults, growing awareness and insight and increasing awareness into neurodiversity means that diagnosis happens much later in life. In this episode, Dr. Katie and I walk you through the signs, the process and what the journey to an adult autism diagnosis can really look like. Hope you find it super useful. I welcome along to the Aspiring Psychologist podcast. I'm Dr. Marianne, a qualified clinical psychologist. Thank you also for today for sticking with my voice, which is not always as present as it usually is. Virtual throat lozenges in the comments are so gratefully received. With no further ado, let's dive in and catch up on my chat with Dr. Katie Adolphus where we are looking at adult autism assessment and diagnosis. I'll catch you on the other side. Hi Katie. Dr. Katie Adolphus, welcome to the podcast.

Dr Katie Adolphus (: 01:11

Thank you very much. Thanks for having me.

Dr Marianne Trent (: 01:13

Well, thank you for being here. You are a clinical psychologist and you specialise in working with people of all ages who might fit within a diagnostic criteria for autism and or for A DHD. Today we are thinking about autism. Thank you for pitching this episode to me. Could you tell us a little bit in case someone has no idea what is autism and how might people observe that in themselves or others?

Dr Katie Adolphus (: 01:43

Very happy to. So autism is considered to be a neurological difference. So it's about how your brain has developed and impacts or influences how people see the world from a sensory point of view, from a social and relationship point of view and in terms of their communication style and preferences. So it's a difference rather than a deficit or a disorder. And so it has equal value, but those are some of the domains in which you might notice differences.

Dr Marianne Trent (: 02:20

Thank you. And adult autism diagnosis are very much becoming more spoken about more recently. Can I ask what triggers or what things might happen in someone's adult life that might make them begin to question whether they might be autistic? Katie?

Dr Katie Adolphus (: 02:39

Of course. So one of the really common ones is that a child of theirs has been identified as autistic or neurodivergent, which is the umbrella term for lot of different differences and has made them look back and own childhood their own experiences and how they are understanding the world. That brings them to a point of wanting clarification for themselves, but it might also be somebody who's had some struggles in the workplace and struggles to or reach their potential or those kinds of relationship hiccups that are having an impact on their wellbeing. Lots of adults talk about having their intentions misunderstood so that they come at a situation giving, making really clear and direct communication and that's interpreted as rude or which is absolutely not that person's intent. And similarly obviously it can work the other way where they're struggling to read somebody else's intent in the way that that other person is intending. So those kind of challenges within the relationships that they experience in the world can often bring someone to wonder about whether they're autistic.

Dr Marianne Trent (: 04:06

And just as you were talking, it was making me think about my current context, which as I explained before we started to speak, I've hurt my neck and so I'm just fresh back from physio and I'm imagining whether someone is realising there's resistance in the way they are socially, the way they're engaging with the world. And actually sometimes even the process of assessment and diagnosis can free that up so that they understand themselves better so that they can engage more fully and I guess optimally thrive. Does that sound about right, Katie?

Dr Katie Adolphus (: 04:39

Absolutely. And it's about one of my passion for the area is because interested in people's stories and the stories that we tell ourselves about ourselves, and if you're autistic but haven't known that framework to understand yourself, you'll have told yourself many stories about how you are doing and other people will have contributed to that as well. And so to having a story that actually what you're describing, there's a community of people who experience the world in similar ways and there is a way of understanding it so that it's not that you're wrong, it's not that you're broken, it's not that you're mad or crazy or whatever else you might have wondered about for yourself, but it is that there is a difference and therefore you can advocate for what you need to thrive and develop and build a life around those things that bring you joy, bring you replenishment and build strategies around those bits of life that challenge.

Dr Marianne Trent (: 05:46

Yeah, absolutely. And are there different ways that people of different genders may exhibit signs of perhaps being autistic or things that they're struggling with or maybe even finding easier? What are the gender profiles? Katie,

Dr Katie Adolphus (: 06:02

That's a really interesting question because historically what we understood to be autism is what we now understand to be a typically male way of experiencing autism or an external way, a way that's observable to others. And so it used to be that many more boys and men were thought to be autistic than girls and women nowadays there's a real sense of an understanding of there's an internal experience of being autistic as well that is less observable to the observer, but it's very much experienced and can be very, very impactful and very important to understand. So this started being described as the kind of girls version, girls and women's and female version of autism. And now it's better, I think described as the internal experience of autism, which means that oftentimes girls, women, non-binary and some male people experience the internal version of autism. And so when we are helping people discover that we are really being mindful about what's your internal experience of the world? You might be doing X, Y, and Z that neurotypical people might be doing as well, but what's your experience of doing that? What's the cost of doing that to you? Your wellbeing and your energy levels? Energy,

Dr Marianne Trent (: 07:30

Yeah. What it costs you to engage in your normal life or to be able to go out there and earn money and do all the things. Is that masking or is that something beyond masking?

Dr Katie Adolphus (: 07:42

I think it can be described as masking. And masking is when you work and it can be conscious or unconscious, but when you are going against your internal authentic way of being to be safe in the world to present as somebody without differences and who fits the majority way of being the majority population. And as I said, it can be conscious because I'm not presenting all of myself to you in this podcast. There's parts of me that I'm squishing down and masking, and that's a conscious choice, but it can also be unconscious where you've just learned through life's experiences that that bit of you makes you vulnerable. So it's not safe to be that way.

Dr Marianne Trent (: 08:27

Yeah, like socially conditioned, that's undesirable. That's not okay, don't do that.

Dr Katie Adolphus (: 08:32

Yeah, don't flap in this way, but it might be okay if you flick your hair.

Dr Marianne Trent (: 08:36

So some of the ways to cope with life might involve what people call stimming, which might include flapping any other kind of stemming activities that people might see in others or in themselves.

Dr Katie Adolphus (: 08:51

So sometimes it might be physical movements or clicking or saying different words. I mean, if you think about it, actually laughing is a, because A is repetitive movement that happens to kind of help regulate emotion. And so laughing is a funny thing we do with our breathing and our voice box when we're feeling a big emotion, whether that's hilarity or embarrassment or whatever, as long when the emotion gets that big, we do a thing and that's whats are in lots of ways. So there's lots of different types, fiddling with hair, fiddling with your clothes, pacing up and down when you're stressed, there's all sorts of things and they stand out from typical more or less in different ways.

Dr Marianne Trent (: 09:45

So obviously everybody either with an autism presentation or not will self stimulate at times. But actually there's certain key stems and if used repetitively and perhaps not always in conjunction with, I dunno, is this the wrong term, but more socially accepted ways of stimulating ourselves or regulating ourselves like a soothing rhythm breath for example. That's what we tend to advocate to people, but actually if spinning around or flapping is doing the same thing, but you certainly get a few more stern looks if you're doing that.

Dr Katie Adolphus (: 10:21

Yes. Yeah, because I don't think people probably think of laughing and those other things that we've described as stems in that way, but I think autistic people can use stems to help regulate perhaps more. I dunno that there's research to check that, but that's my experience than neurotypical people and maybe in place of putting words to their words, internal kind emotional experience.

Dr Marianne Trent (: 10:49

Yeah, I'd never thought about laughing as being, I know right, a stem. Yeah, it's really interesting. So people that laugh a lot, that might be more of a stimulatory behaviour.

Dr Katie Adolphus (: 11:01

I think I was mentioning that in the context of saying actually stimming is an experience that we all share whether we're neurotypical or neurodivergent. So that's one way in which there's a shared experience, but that isn't to say I think autistic people use stems

Dr Marianne Trent (: 11:18

More. I see. So there's no correlation between laughing and autism. It's an example of self-esteem.

Dr Katie Adolphus (: 11:25

It's just a way in which experience is similar.

Dr Marianne Trent (: 11:28

I'm with you. I'm with you. Thank you for clarifying that. So I guess if people have got to this stage of the podcast episode, they'll be thinking, yep, I think ticks a box, ticks a box, ticks a box. What are the processes involved with getting an autism assessment for an adult?

Dr Katie Adolphus (: 11:47

So different NHS trusts to do it in different ways, but your GP will be your first port of call to go through the nhs. There's also the system of going through right to choose providers that's potentially possible. And then there's the independent sector as well. So I can talk to my own experience of offering adult assessments in the independent sector. That's a system whereby contracts have been set up with different providers to provide a service for NHS clients that remains free at the point of need. So you can go to your GP and ask for consideration of being put on the right to choose pathway for an assessment. And there are criteria for whether you can join those pathways and those waiting lists, I don't have details about that because that's not, my service doesn't do right to choose assessments, but that's a possibility for people within the independent sector.

(: 12:43

So for us, people make an inquiry and can book an appointment to get an initial, it's like a screening appointment that talks through what brings them to wonder about an assessment. And it's really to make sure that an assessment makes sense and isn't a use of resources that isn't meaningful. And then the assessment itself is a deep dive into someone's experiences in childhood, right through up to adulthood, their experience of learning, friendships, relationships of the sensory world of what's it like, flexibility and plan versus the need for predictability. And we cover that ground in a number of different appointments and doing a number of different tasks just to explore how someone approaches the world. And we ask whether they've got people in their family or network who they would be comfortable to contribute. So we might ask a parent to give us some information about what they remember of their child in their childhood or a partner perhaps that could contribute something. And then we pull all of that information together to reach a decision about the possibility of them being autistic.

Dr Marianne Trent (: 13:59

Great. So there's not the practical elements as such. You might see in children with an ADOS assessment for example. It's much more conversational and relational.

Dr Katie Adolphus (: 14:11

It is more conversational with adults. Some services including ours, we do still do the ados, but the adults, the ADOS that we do for adults is still fairly conversational. There's a few tasks, but it's not as task heavy as the ADOS that we might do for children.

Dr Marianne Trent (: 14:31

I was in a school meeting recently and there was a copy of that book. Is it called Tuesday? It's Got Frogs in it. Yes. I think that was in the ADOS at one stage and there's no words in it. And which I said to the teacher, I said, did actually, this is commonly used as a screen for trying to try to work out what might be going on and what people's understanding of that is, and it's used as part of autism assessments. She's like, no, I had no idea. We just use it as a picture book. And I was like, well actually you can use it in that way to kind of think about pre-screening. Is there anything that someone could do if they're preparing for going in for an initial assessment to prepare for that kind of optimally? So maybe we used to do developmental assessment reports in clinic, could they have those conversations with their parents, with people who knew them when they were a child and think about all of that. What are top questions or top ways of preparing do you think?

Dr Katie Adolphus (: 15:36

I think what we often mention to adults is to just spend some time ahead of the appointments reminiscing. And maybe that's talking with parents as you say, or siblings about and thinking about, okay, where was I when I started primary? Where did I live? What school did I go to? So just trying to really put yourself in those times because then accessing memories of those times will be easier. So it might be looking through school reports or photos from school days, anything that can just bring those early years to the kind of more accessible bit of your memory really. So that can be really helpful so that they've done some digging around in their life experience before they get to us.

Dr Marianne Trent (: 16:30

Yeah, absolutely. And if someone is heavily defended or so used to masking, can it be hard to really work out whether they do fulfil that diagnostic criteria? So can you always sve out what needs to come through?

Dr Katie Adolphus (: 16:49

I think that's something that actually a lot of people are worried about. The fact that they've gone a lifetime so far without it being identified might either mean that it doesn't exist and they're making it all up and they're over exaggerating concerns or what have you, or that an assessment process won't uncover it. So we work really hard to get underneath the mask. And actually sometimes that's why the ADOS can be helpful. It's not without its issues, but it can be helpful because it's kind of odd. Some of the tasks and things that we do are just slightly odd. So it's unlikely that you've created a script for it or quite prepared for it. So in that kind of way, it can be a helpful way to get underneath the mask. And there are other adult based assessment tools that help us do that as well to get underneath the mask.

Dr Marianne Trent (: 17:48

And it's making me think of when I was training in my doctorate in clinical psychology and they were like, actually, when you are a clinical psychologist and you're familiar with all these measures, it does actually make it a bit harder to test you laterally because the answers and what's coming. Are there certain professions that are more likely to have an autism diagnosis to be autistic or to be gravitating towards that? I know that always when I was working in cams for example, we found, so I was working in West Midlands very close to Jaguar engineering bases and it was said that actually this is almost a hotbed of children and young people with autism presentations, whether they're diagnosed or not because their moms or their dads or both are actually engineers. And that was thought to be something that naturally lots of people with autism would gravitate towards. Does that make sense?

Dr Katie Adolphus (: 18:54

It does. It does. And I dunno what the current sense is about that specifically, but I remember historically there being research around certain, but if we think about it more broadly from certain professions, but think about what is the cognitive style of someone who's autistic. And so autistic people are ordinarily fantastic, but paying attention to one thing at a time. And they couldn't often do that above and beyond the kind of attention span of a neurotypical person and have those really highly specialised, highly specific areas of interest and depth of knowledge and understanding. So professions or disciplines that require that suit an autistic way of being in the world, autistic minds are really good at that kind of all or nothing. Something is either true or false, right or wrong in a really clear way. So professions that might be served by having that perspective and where communication is really clear and explicit.

(: 20:05

So there'll be some areas of law where having that real clarity of thought about, well this means that, and the other thing means the other thing can bring a real strength to that field. So it's about fields that benefit from an autistic way of being and there might be other disciplines or professions or ways of living your adult life that lend themselves to people who don't need as much social interaction to keep their social tank of energy full. So those, I was speaking with one adult I know who's autistic, and through school he got those quizzes that you can take about what profession you should go into. And his answer was lighthouse keeper. And I thought, well that's just glorious because he would have the free, that's not what he became ultimately. But I thought, well what a glorious way of being if that suits you, the amount of social isolation versus interaction that works for you. Perfect.

Dr Marianne Trent (: 21:16

Yeah, we are all so different, aren't we? That would be a terrible job for me. I love speaking with people. I love random conversations with people. I'm the sort of person that will chat to someone in Tesco over the cauliflowers, but we're all so very different. But actually what we know is that people can reach what's called autistic burnout when they're really struggling with the result resources. They've got to be able to do all the things that life necessitates. Could you tell us a bit more about autistic burnout?

Dr Katie Adolphus (: 21:51

Sure. So it's a term that the autistic community have kind of, I dunno if the autistic community, but the first to kind of use it. But certainly it really resonates with lots of people's experience and it describes that chronic ongoing emotional and cognitive and social exhaustion that being neurodivergent in a neurotypical world can generate. And so if you are in that chronic state of using up more resources than you've got because the world requires that of you, then you stay in that depletion and you're in energy debt, so to speak, which can have an impact on how well or otherwise you manage a new function in the world. So burnout can look like losing areas of functioning that have previously been okay for you. So you might eat less, be unable to speak for a period and just need to be in bed by yourself for long stretches because the world is hard and exhausting without it being set up for you.

Dr Marianne Trent (: 23:05

Thank you, thank you for helping us understand a bit more about that. And when people receive a diagnosis, they might respond in a variety of different ways. It might feel like, oh, finally I feel like I know myself and I can get out there and tell people about me and people will understand me better or I will care less about what other people think of me. Yeah. Is it always a good thing? Does sometimes feel like a negative thing or there's shame or judgement or blame or it's kind of their fault? There's an internalised process there?

Dr Katie Adolphus (: 23:39

That's a really, really important question because we shouldn't be doing it if it's not ultimately and meaningful. My experience in talking with people is that, and what I witness often starts with relief to have reached the point where you have wondered why the world seems more difficult to navigate for you than it does for others, has suddenly got a framework around it to understand that which brings with it things that might be helpful to make life less difficult to navigate. So it often starts with relief. I think there are also in the journey periods of time where it's like, oh, blind mood, but that's lifelong. That means it's going to always be difficult and that's hard. So I think that's potentially a stage or a position that people go in and out of as well. And I think there can be elements of grief and loss about, gosh, if this was understood about me in earlier years, how different could things have been? And I think what the joy of doing this work is the relief in the beginning and then the coming through the processing of this framework to your life coming to a point of validation and acceptance and strength and a way of building self-compassion, building self-esteem, which just are so vital to wellbeing and emotional and mental health, aren't they?

Dr Marianne Trent (: 25:10

Yeah, absolutely. And I think especially since the pandemic, the way the world is now, very much I think encourages us to make our own bespoke way of existing in the world in a way that does suit us, suit our own individual needs. Our family needs just our preferences and it is almost like we can paint by numbers now. We can really have our lives, I dunno, vibe with us, not just one size fits all. So employment doesn't suit everybody, but so many of us for so many years have been told, you do this, you go to school, you go, you get your A levels, you go to uni, you get a job, then you retire. Those are your options. That's it. And I think it's really made us think, actually, I dunno. I dunno if I want that.

Dr Katie Adolphus (: 26:07

And employment that's in a shared office where you have to manage the noise and the hub of everybody around you and the chance that they might pass you and make some inconsequential social chitchat comment that doesn't suit how you function. And then going, actually I can do this work. I can be productive and I'm not using up my social battery to do it. I can use my social batteries in ways that replenish me

Dr Marianne Trent (: 26:35

When I was working in a shared office. People, I dunno, people just like to talk, don't they? And I like to talk as well, but if I've got work to do as well, I almost had to get myself in work mode and wear my AirPods and risk being quite rude to people, otherwise I would not get my work done. And then the clients, my patients don't get what they need. They don't get their reports, they don't get their clinical notes done. And I'm in trouble. And I'd have to explain to my colleagues actually, when I've got my AirPods in as much as I'd love to chat, I can't

Dr Katie Adolphus (: 27:14

Closing the door on your individual office, isn't

Dr Marianne Trent (: 27:17

It? But if you haven't got, haven't got one.

Dr Katie Adolphus (: 27:18

Yeah. So that's the sign of it. Absolutely.

Dr Marianne Trent (: 27:22

Yeah, absolutely. So yeah, if people are thinking, oh yeah, this could be worth exploring, is there a generic ballpark figure for what someone might be expecting to spend? It might be a range for an adult autism assessment.

Dr Katie Adolphus (: 27:39

I think it is a range rather than a precise figure. But I would be expecting a roundabout, maybe a bit, maybe a bit over 2000 pounds for it, which is a huge amount of resources. So if I was somebody in that, and you can definitely get it cheaper, I'm talking about services that multidisciplinary and particularly thoughtfully and carefully, that takes a lot of resources. I think if you are thinking about pursuing that, speak to services that you find, ask them whether they fulfil what's called the NICE guidelines because those are, as you'll know, the nice guidelines, they describe what is required for an assessment. And it means that if the service you go to fulfil those nice guidelines, follow those nice guidelines, the outcome has a better chance of being accepted in statutory services and in services you approach for things like accommodations and provisions on the basis of any diagnosis that's made.

Dr Marianne Trent (: 28:47

So anything, I guess, especially with the rise of how popular talking about this is becoming in the media, we are likely to see very cheap assessment, diagnosis processes. But cheap is not always best,

Dr Katie Adolphus (: 29:05

Not always. And that's the price range that our assessments are in. So of course I'm going to tell you that that's the price range to imagine. And I think in services that develop to assess for autism, I think it's really important to think about what's required to make a sound and thorough and appropriate, valid assessments. What are the extras that can really add depth and completion to the outcome and someone's understanding of themselves but aren't needed for diagnostic integrity. And so service and each practise will put a line in a slightly different place, put that line in a slightly different place, I think.

Dr Marianne Trent (: 29:47

Yeah, yeah. And I think there's so much skills and benefit in clinicians who have professional qualifications and have years of experience in that. So even when I was in the CAMS team, there was a couple of consultant clinical psychologists, a speech and language therapist who had worked in a qualified capacity for many, many years. I think two OTs actually, and then kind of CBT therapists and people that you've got all of those years of experience combined, but also experience of seeing people that are neurotypical as well, people across the lifespan so that you are really getting a sense of whether this is something that's going to support and help that person. And I think when people don't have those levels of professional qualifications, they don't have that professional registration. I think they don't have the integrity and they don't have, I don't think they've got the requisite skills personally to be doing the work. They are saying they're experts in always.

Dr Katie Adolphus (: 31:00

Yeah, absolutely. And I think it's really difficult as well because it leaves both the practitioners who are in that situation and the clients really vulnerable to having the outcomes challenged. And that must be incredibly hard for people who have gone through a process to have the outcome challenged. And I guess I would also say Marianne, that the cost of it is a huge barrier and so there'll be many for whom that's impossible. I think self-identifying as autistic, if you've done the work, if it fits your way of being, if it just makes sense of the bits that didn't make sense beforehand, I think that it's valid. It's okay to say that you consider yourself to be autistic. I wouldn't challenge that myself. I think the value of having it clarified through an assessment process is that some autistic minds prefer certainty and so need an external person to go, yep, I agree, this is what it is. You haven't fooled anyone, you haven't exaggerated anything. It's what it's that can bring internal to that identity claim. And also access to legal protections under the equality act, autism disability. You don't have to agree that it inherently is, but it's legally classed as one. So you do get protected by some legislation around people providing support and provid to make sure that you thrive rather than burnout. So I think there is real positives for having that formal process, but identifying it in yourself and noticing it in yourself and describing yourself that way is valid too.

Dr Marianne Trent (: 32:54

Amazing. Thank you so much for your time and for helping us understand more about this. Where's the best place for people to learn more about you and your work, Katie?

Dr Katie Adolphus (: 33:03

So my website is the ADO practise co uk and we have a Facebook page, which is the ADO practise, and we're on Instagram as the practise. So that's where you find us.

Dr Marianne Trent (: 33:19

Amazing. I'll make sure that all of those details are on screen for YouTube and in the show notes and the description everywhere else. Thank you so much again for your time and for putting up with my voice, which almost abandoned us at times today as well. I think it's just about held on. Thank you so much. Great.

Dr Katie Adolphus (: 33:35

Well no worries. Thanks so much.

Dr Marianne Trent (: 33:37

Thank you. Thank you so much for your time in listening or watching this episode. If you have found it helpful, please do drop me a, like a comment, a follow, a subscribe, following a show for a creator that you rate really is the kindest thing you can do for free. And I would be so grateful if you could do that for me. Please. You might well be engaging with this episode because you are working in the mental health space. If you yourself have an autism diagnosis, you may wonder whether that would make you a good enough mental health professional. And this is where I think the book and autistic anthology, neuro narratives of mental health professionals is really worth checking out. It is a collab, so to speak, between Nikita Shepherdson, Dr. Vicki Jarvis and myself, and it is real life look through the lens, or for people who self-identify as being autistic and the way that they've seen the world, the way that it shaped their experiences and how they've gone on to successfully work in the mental health space.

(: 34:44

We have psychologists in there, we have psychiatrists in there. There's all sorts of people at different stages of their career, and it is a fascinating read. So I hope you find that really useful if you read it already. I would love if you'd put a review on Amazon and good reads. If you would find future episodes on autism and being autistic or any element of neurodiversity, please do let me know by dropping me a comment on YouTube and or connecting with me on social media where I'm Dr. Marianne Trent, everywhere. Thank you so much for being part of my world and I will look forward to bringing you the next episode of the Aspiring Psychologist podcast, which will be available from 10:00 AM on Saturdays, on YouTube, and wherever you get your podcasts from. 6:00 AM on Monday. Take care. Be kind to yourself. Bye.