June 14, 2025 • 25 mins
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Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
So the thing I think people worry about when they're coming to diagnosis late in life is this kind of imposter syndrome.
.999And the idea that maybe, maybe they're not autistic and should they get diagnosed and do you need a formal diagnosis to like officially be autistic? And generally in the community self diagnosis is completely valid.
(00:21):
There's something quite uniquely autistic about correctly self diagnosing yourself is not the sort of thing you do like in the pub.
or over a cup of tea, like, I don't think anyone who's self diagnosed or self identified, another term as autistic has done so lightly.
.999And there are tests, there are tests online that you can do and I don't want people to think that this is like, oh, Dr.
(00:46):
Google, diagnose yourself online, but some of these are really, really good, like, really, really accurate.
So there's a website called asptests.
org, that's A S P I E.
T E S T S dot O R G.
It's not a particularly flashy website.
There's, it's basically just one page with some links to different diagnostic tools.
(01:09):
There's the RADS R, the RITVO, Autism Asperger Diagnostic Scale Revised.
That comes up in a pub quiz, I want credit.
And the Autism Spectrum Quotient, the AAQ, which are both pretty reliable.
They, so they've tested the validity of these tests. 16 00:01:29,249.999 --> 00:01:30,630 They being the scientists.
(01:30):
And there was a study in the Netherlands where people took the RADS R, which is the first one.
on AspieTests.
org.
And 80% of people that were identified as autistic from that test went on to be formally diagnosed by a clinician.
So it's, it's fairly accurate.
.999It will also, when you do these tests on AspieTests.
(01:52):
org, it will show you like where your results fall compared to a neurotypical population and then compared to diagnosed autistic people.
And it does split it by gender.
So you can see where you, according to these tests, I, I scored higher or within the range of autistic men and yeah, and then I went on to be diagnosed.
(02:14):
So I think they're fairly fairly accurate.
The imposter syndrome thing is like, I think everyone has that as well.
And I know I certainly did before I got into the community a little bit more.
I wasn't gonna.
(02:36):
not self identify as autistic if I, you know, but I just, I didn't feel like I was kind of allowed in inverted commas to, to signpost people or to give advice or to respond to questions about being autistic until I had that bit of paper.
But what I learned from being in the community for much longer now is that self identifications like really valid and accepted being formally diagnosed, being formally diagnosed can be.
(03:05):
Kind of a privilege, really.
It's not something that's open to everybody.
There are There are cultures around the world where autism isn't even really recognized as a thing.
There are places where it's stigmatized.
There are places where the culture kind of precludes diagnosis on some of the traits of autism because of cultural differences.
(03:26):
.9So the getting diagnosed as autistic is, is a very Western thing.
Like the, it exists in diagnostic manuals that are US and Europe centric. 39 00:03:36,945.1 --> 00:03:43,585 So the rest of the world does not have diagnostic standards that take into account other cultures.
So that's one of the issues.
(03:46):
There's also issues with waiting lists.
.999It can take, I don't know, four or five years sometimes to get diagnosed on the NHS and there's no guarantee then that the diagnostician that you see will have an up to date understanding of autism in adults.
So you may wait for years to see someone to get diagnosed and they have an outdated idea of what autism is and you miss out on that diagnosis. 44 00:04:12,634.999 --> 00:04:14,725 It can cost a lot of money to get diagnosed.
(04:14):
.999So there's a financial barrier there as well.
.999And there are, there are other barriers or other unintended negative effects of diagnosis that I didn't even think about until after I was diagnosed.
.9So there are countries in the world that you can...
cannot emigrate to, or it's incredibly difficult to emigrate to, and you have to give a lot more proof than anyone else applying to move to, if you're autistic.
(04:42):
.001I'm wondering, Liz, if you've brought up a lot here, and maybe we should sort of interject some of our own experiences of some of the things you've already brought up. 50 00:04:57,560.001 --> 00:05:18,125.001 I mean, when we go back to what you first were about with imposter syndrome, for instance, I think That's really brave that you've expressed that out there, and I think, don't think it, I don't think it's in people's heads. 51 00:05:19,925.001 --> 00:05:42,285.001 It's this thing about trying to validate the truth of looking into autism for yourself without having an outside diagnosis, isn't it? Do you see where I'm coming from? Is that what you're meaning here? Right at the beginning. 52 00:05:44,730.001 --> 00:05:49,740.001 In what you're saying is concerns that it might not be a good idea sometimes to get diagnosed. 53 00:05:49,740.001 --> 00:05:52,860.001 Is that true? Yeah, I think there are things that... 54 00:05:54,610.001 --> 00:06:04,130.001 Not everyone's aware of these issues even existing before they get diagnosed and it's worth knowing some of those ahead of time. 55 00:06:04,620.001 --> 00:06:10,510 It's like you really feel there's a whole load of stuff people definitely need to know about this before they make decisions. 56 00:06:10,930.001 --> 00:06:20,660 Do you see where I'm coming from? You really, you really have a passion to tell people an awful lot and make them consider and think about an awful lot before they go anywhere near this.
(06:22):
I just think the information should. 58 00:06:24,805.001 --> 00:07:03,165.001 Should be out there and talked about so that it's the people can access him and make up their own mind Yeah, I think like if you're if you're a parent You get diagnosed later in life that could cause issues with social services and with and with even with schools and teachers as well I mean not that a teacher would have access to her parents medical records But if that that information can sometimes bring a lot of stigma in and then that causes problems And you might end up with social services coming around and checking that you're a fit parent even though you know That's a real concern, and that's come up recently. 59 00:07:04,65.001 --> 00:07:22,65.001 That's come up recently in one of the online forums I'm on, in somebody actually asking about diagnosis for themselves as parents when their children are being diagnosed, and getting social services involved to help them as autistic people with their parenting. 60 00:07:22,105.001 --> 00:07:28,215.001 And people have been turning around to them and saying, Whoa, whoa, whoa, watch, watch what you're doing before you invite... 61 00:07:28,560.001 --> 00:07:30,310.001 Social services into your life. 62 00:07:30,850.001 --> 00:07:36,500.001 You know, you are technically both now identified as two disabled, vulnerable people. 63 00:07:37,420.001 --> 00:07:37,790.001 Yeah. 64 00:07:39,380.001 --> 00:07:51,990.001 Technically under the law, whether you be in your late twenties and an intelligent and holding down a job, if you're both autistic and both that's on your records, you, you, you're putting yourself in a situation. 65 00:07:53,775.001 --> 00:07:56,885.001 My wife and I have concerns about this. 66 00:07:56,995.001 --> 00:08:00,265.001 I am diagnosed she is not. 67 00:08:01,465.001 --> 00:08:11,965.001 There is more chance of her being listened to, as we progress into our old age, as an undiagnosed woman than myself as a diagnosed male. 68 00:08:14,965.001 --> 00:08:17,925.002 The, the, the stereotypes that go with me as I grow older. 69 00:08:17,980.002 --> 00:08:22,680.002 I mean, I start to lose autonomy in the system because I'm diagnosed. 70 00:08:25,310.002 --> 00:08:26,400.002 These are the sort of issues. 71 00:08:29,400.002 --> 00:08:31,420.002 There are real negatives to being diagnosed. 72 00:08:34,420.002 --> 00:08:36,910.002 Yeah, no, I think that's a really valid point. 73 00:08:39,600.001 --> 00:08:47,204.902 When you're, yeah, I mean, hopefully by the time, hopefully by the time we're at the point where... 74 00:08:49,225.002 --> 00:08:52,345.002 You know, getting into old, old age attitudes will have changed. 75 00:08:52,605.002 --> 00:09:00,765.002 That's kind of one of the reasons why I'm vocal about stuff is to, to change perceptions and change the stereotypes that we have. 76 00:09:00,975.002 --> 00:09:01,455.002 Me too. 77 00:09:02,155.001 --> 00:09:02,815.001 Absolutely. 78 00:09:02,855.002 --> 00:09:03,315.001 Me too. 79 00:09:04,395.001 --> 00:09:14,955.002 And, and some of the other people that I know that are starting as late diagnosed people to speak out or not in podcasts and in any kind of forums, that is our concern at this moment. 80 00:09:14,955.002 --> 00:09:26,950.002 And that's, that's, that's, Why we need to show sometimes people think that a diagnosis will help them overcome the imposter syndrome and obviously it does. 81 00:09:26,950.002 --> 00:09:31,330.001 That's kind of validation is the antidote to imposter syndrome. 82 00:09:32,660.002 --> 00:09:38,420.002 But people sometimes say, Oh, if you're diagnosed, you can get support services to that. 83 00:09:38,440.001 --> 00:09:40,610.001 I would say what fucking support services. 84 00:09:43,460.002 --> 00:09:45,920.002 I have received nothing as far as I can work out. 85 00:09:48,920.002 --> 00:09:52,220.002 Like, yeah, there aren't any the support I've had. 86 00:09:52,250.002 --> 00:09:53,600.002 I've paid for right. 87 00:09:53,650.002 --> 00:09:53,920.002 And. 88 00:09:55,55.002 --> 00:09:59,625.002 I didn't need to give any paperwork to my counsellor, you know, I haven't needed to hand over any proof, ever. 89 00:10:01,605.002 --> 00:10:13,525.003 The support I got was from Morris and having an organisation and being introduced through Morris to other organisations and then ending up making a, this wider self support group that's Autistic Radio has become. 90 00:10:16,525.003 --> 00:10:28,855.003 Yeah, we only get support when we find it ourselves, and we don't need to prove, we don't need to prove our neurotype in order to get help from our peers, because we can, like, we can sniff each other out. 91 00:10:29,625.002 --> 00:10:30,465.003 That sounded wrong. 92 00:10:33,465.003 --> 00:10:42,105.003 Yeah, yeah, yeah, but where would we find our peers without, well, without the scene, or we can, without recognition, or we can, I suppose, without diagnosis. 93 00:10:45,105.003 --> 00:10:45,835.003 Yes, you're right. 94 00:10:45,925.003 --> 00:10:47,335.003 Morris, you're absolutely right. 95 00:10:47,345.003 --> 00:10:48,965.003 That is an imperative we have. 96 00:10:49,285.003 --> 00:10:55,985.003 We cannot find our scene, but I don't think diagnosis really is a, is, is the gatekeeper to that. 97 00:10:58,985.003 --> 00:10:59,875.003 No, it shouldn't be. 98 00:10:59,985.003 --> 00:11:00,505.003 Yeah. 99 00:11:02,235.003 --> 00:11:07,845.003 No, I, no, I don't think diagnosis is, and I, I've certainly never seen anybody. 100 00:11:08,425.003 --> 00:11:12,375.003 Insist that somebody show their diagnosis and unless they're assholes doing it. 101 00:11:13,325.003 --> 00:11:15,445.003 Is that happened ever to you, Morris? You, you... 102 00:11:18,445.003 --> 00:11:28,435.003 Well, I've, I've, I've had support with employment placing, which has worked out much better than the competitive job search system. 103 00:11:28,825.003 --> 00:11:32,405.003 And it's, it's, it certainly wasn't that service's own fault. 104 00:11:32,425.003 --> 00:11:39,25.003 It's just their funding that obviously was, my diagnosis made me eligible. 105 00:11:41,515.003 --> 00:11:44,659.903 So, yeah, occasionally there are things at work, you know. 106 00:11:45,190.003 --> 00:11:46,590.003 But you're, you're not required to. 107 00:11:48,380.003 --> 00:11:51,530.003 But to get accommodations in the workplace, you don't need proof of diagnosis. 108 00:11:53,820.003 --> 00:11:58,220.003 Well, I'm talking about actually getting the work at all, that's yeah. 109 00:12:00,220.003 --> 00:12:05,790.003 He was in a scheme where they were actually particularly aiming for autistic people and giving them a, a, a way in. 110 00:12:07,20.003 --> 00:12:11,180.002 And they insisted that you hand over your medical records in order to obtain that employment. 111 00:12:14,180.002 --> 00:12:19,830.002 They knew from me being registered in the one stop shop that I was diagnosed, just check the box. 112 00:12:21,370.002 --> 00:12:23,260.002 Perfectly civil, perfectly civil. 113 00:12:24,400.002 --> 00:12:27,960.002 But it kind of was a requirement, is what we're saying. 114 00:12:28,860.002 --> 00:12:30,640.002 Well, that seems a little bit discriminatory, to be honest. 115 00:12:33,600.002 --> 00:12:40,630.002 But irrelevant of that, there were very few things that are out there, whether you're diagnosed or undiagnosed and diagnosis doesn't particularly help you. 116 00:12:42,220.002 --> 00:12:57,610.002 No, I've given over my diagnosis report once in order to get, be accommodated in the workplace and it, I don't know whether it worked against me or not, but I didn't get any accommodations and they were not, you know, I wasn't asking for anything ridiculous. 117 00:12:58,790.002 --> 00:13:00,790.002 It's not about diagnosis for me. 118 00:13:00,840.002 --> 00:13:04,610.002 The big thing is about realization. 119 00:13:04,660.002 --> 00:13:12,180.002 And once you realize that you're autistic, you are on a journey to trying to make head or tail of it for you personally. 120 00:13:12,560.001 --> 00:13:18,40.002 You know, not to be an expert in autism, but to be an expert in your own autism. 121 00:13:18,330.002 --> 00:13:24,860.002 And links that it has to other people's autism is a way of exploring it and it helps your peers. 122 00:13:26,635.002 --> 00:13:33,155.002 I don't, what we need is a way of getting to our peers, it's not more diagnosis. 123 00:13:36,155.002 --> 00:13:37,355.002 It depends who you are. 124 00:13:39,5.002 --> 00:13:50,395.002 Some people do find that the diagnosis, it's not as proof, but as it's like a, dare I say, a qualification. 125 00:13:52,925.002 --> 00:14:03,475.002 I know what everybody's saying about, you know, the diagnosis and the model and all that, but some people feel that they need that, so it's validated in their head, not to prove to anybody. 126 00:14:03,695.002 --> 00:14:08,985.002 It's just so that they're convinced within themselves they've got an answer of some kind, and then they work on. 127 00:14:10,645.002 --> 00:14:13,975.002 But then they can build on that as they wish. 128 00:14:13,985.002 --> 00:14:23,415.002 I mean, there's someone that I know that is looking to go through the diagnosis pathway. 129 00:14:24,635.002 --> 00:14:34,795.002 But it's not going out to prove to anybody or to make it, they feel the more if they get that, the more autistic and the people that are autistic that don't have diagnosis. 130 00:14:34,985.002 --> 00:14:38,385.002 It's just more for a self sort of assurance in their head. 131 00:14:39,205.002 --> 00:14:42,175.002 So there's a lot of people out there that prefer that. 132 00:14:42,385.002 --> 00:14:43,15.002 model. 133 00:14:44,985.002 --> 00:14:46,995.002 So it kind of helps them. 134 00:14:48,385.002 --> 00:14:51,685.002 But other people believe that it's not necessary. 135 00:14:52,145.002 --> 00:14:54,525.002 They don't feel the need to validate their cell that way. 136 00:14:54,545.001 --> 00:14:55,325.002 They can go through. 137 00:14:55,765.002 --> 00:15:01,25.002 Like, for instance, those Aspie tests, like I actually tried one of them. 138 00:15:02,425.002 --> 00:15:03,835.002 It was one of the 40 questions. 139 00:15:03,845.002 --> 00:15:05,115.002 I can't remember what one it was. 140 00:15:05,335.002 --> 00:15:06,659.902 I've been the third one down. 141 00:15:07,500.002 --> 00:15:19,50.001 And I just thought I'm going to give this a try, see what's, you know, what it's like and confirmed that I may be autistic and I should seek professional advice. 142 00:15:21,830.002 --> 00:15:22,910.002 Well, that must have been a relief. 143 00:15:24,620.002 --> 00:15:25,780.002 Well, I didn't say it like that. 144 00:15:25,780.102 --> 00:15:28,220.002 But I know the language is quite funny. 145 00:15:28,450.002 --> 00:15:37,35.002 I would say that it was kind of a recommendation and, I encourage someone that I know to, to use that particular one because I had. 146 00:15:38,145.002 --> 00:15:39,585.002 So they've went down that they are taking. 147 00:15:42,585.002 --> 00:16:00,835.001 Realising I'm autistic and now, no, how do I say this? It's not the diagnosis, it's not the time between realising you might be autistic and it's something you want to get into and discover. 148 00:16:01,645.001 --> 00:16:31,315.001 And the diagnosis that it's the whole period of time that you are going to upset in your life, that the largeness of realizing you are autistic and then realizing that you have a choice to make about getting diagnosed or not, that thing in itself is already huge and almost all of it is finding out about autism, other autistic people. 149 00:16:32,365.001 --> 00:16:48,105 What it's like going back through your own history, and that's not going to be particularly supported, whether you have a diagnosis or not, and you're going to have to do that, whether you get diagnosed or not, that's the important thing.
(16:51):
It feels often before you get diagnosed as though there is something to attain there, but the reality when you look back in hindsight is that that wasn't the important thing.
It was the realization and then the gradual research to get an understanding of what autism is personally for you.
(17:14):
.999I'd like to recant my assertion that my diagnosis, having the diagnosis, has never...
given me any access to anything, because I think having that bit of paper is the only reason I got to keep my ESA for the year that I was allowed to have it, because the person doing the assessment, this was back in, it must have been pre pandemic, so I actually went to her place and she asked to photocopy my diagnosis paperwork, and I think that's the only reason that I kept, that they carried on paying it.
(17:43):
for the contributions based that and the blind rattled and I jumped out of my skin, which was pretty obvious, like, it's clearly, I'm either autistic or I have quite severe anxiety disorder.
.999That's the thing as well about the diagnosis thing. 156 00:18:01,449.999 --> 00:18:19,140 It's the way that autism is treated in terms of, it's the support in terms of Or the associated anxiety you have because you've got autism and you've not been able to find any kind of work, so you need to sort of go down the sort of negative.
(18:19):
I know back, you know, kind of sidetracking a little bit, but that's the sort of the culture you're up against.
It's got support there, but you've got to put autism, or your autism in a certain way, in a certain model.
Basically, there's something wrong with you because you've got autism and you need financial support because of that.
I mean, that's difficult to ask of somebody.
(18:40):
I mean, that's why I get ESA, you know, I get and that's based on because I have that diagnosis of autism.
And that is one of the absolute good reasons, because autism in some systems around the world is a disability and people's experience of it can put them in a position where through no fault of their own, they're not available for work as work is offered.
(19:10):
In the system.
So that is a very good reason.
Yeah, that is the, that is the bit of support that there is, that exists.
.999Well, that's a pretty key one and I mean in capitalism.
I don't even know what it is.
(19:34):
Employment Support Allowance.
.9So Employment Support Allowance is about 20 quid a week more than JobSeeker's Allowance if you're unable to work temporarily or full time because of a disability or health condition and you have to provide doctor's notes regularly until you're assessed and then even after you're assessed.
You are then put into one of two groups.
(19:57):
You may get the higher rate if you have mobility challenges as well as non mobility challenges.
Otherwise you're put into a, it's a whole, it's just like jumping through hoops and it's a lot of work.
There in, in some systems around the world, insurance benefits employments allowances, all kinds of different benefits from the state might be in place if you have a diagnosis.
(20:22):
So that is a different consideration.
Yeah, and this is something that can last a half a lifetime as well.
.999Yeah, it's a tiny bit from the state to try and deal with the discrimination you're gonna have in the workplace.
Yes.
(20:43):
And the inappropriateness for the workplace for most autistic people.
Yeah, well that's true.
Going down to diagnosis personally, that is a different, that's a different world, that's a different subject, isn't it? And what it means to you and...
How much it removes from you your autonomy could be a very important thing for you.
(21:09):
How you end up having to still do all the work to really understand yourself might not be apparent.
It might look as though you're going to get some kind of ticket to go and join some services or some outside activities that make you meet other autistic people, but they're few and far between.
(21:30):
.001And you, the better ones are really organized autistic people themselves anyway.
.999The forums are better that are organized by autistic people. 186 00:21:39,914.999 --> 00:21:43,774.999 The charities generally are more eye opening.
.999When you, when you realize you're autistic, it's getting amongst other autistic people and listening to them and hearing, even the factional talk amongst them is more important than your time spent dealing with professionals. 188 00:22:02,689.999 --> 00:22:03,729.999 Yeah, I agree. 189 00:22:04,769.998 --> 00:22:05,119.999 But I'm not. 190 00:22:06,729.999 --> 00:22:07,959.999 Late diagnosed. 191 00:22:07,959.999 --> 00:22:09,489.999 I was diagnosed early. 192 00:22:11,729.999 --> 00:22:15,269.999 I was 17 and I was still living at home with parents. 193 00:22:15,269.999 --> 00:22:18,569.999 So, and there was support there, there was different support. 194 00:22:19,489.999 --> 00:22:19,989.999 In fairness. 195 00:22:20,769.999 --> 00:22:21,229.999 In fairness. 196 00:22:21,349.999 --> 00:22:24,469.999 It wasn't just the autistic support I was gonna mental health. 197 00:22:25,34.999 --> 00:22:25,414.999 services. 198 00:22:26,4.999 --> 00:22:35,854.998 But the autism one was, there were social groups there at the time and they had a certain, it was a structural society and it was just, it was all built in. 199 00:22:35,894.999 --> 00:22:40,804.999 But what I'm aware of was since then, I mean, I'm talking back in 999. 200 00:22:41,839.999 --> 00:22:43,179.899 It's all been withered away. 201 00:22:43,179.999 --> 00:22:47,119.999 It's all been, funding's been taken out of a lot of these things. 202 00:22:47,159.999 --> 00:22:50,839.999 So, a lot of these things no longer exist. 203 00:22:51,129.998 --> 00:22:53,229.999 There's certainly not as many as there used to be. 204 00:22:54,549.999 --> 00:22:58,359.998 And if you're late diagnosed, it's probably not the best place to go. 205 00:22:58,359.999 --> 00:22:59,569.999 It depends where you are. 206 00:22:59,609.999 --> 00:23:03,939.999 I mean, if somebody is living alone, that may be something you might want to do. 207 00:23:04,629.999 --> 00:23:14,194.999 But, as you say, because if something's run by a charity, for instance, it's professional led, it's probably not the thing that, That some people would wanna go to. 208 00:23:14,194.999 --> 00:23:23,644.999 It's like you wanna speak to people and b, actually, dare I say, inspired by some that, that artistic and that leads something. 209 00:23:23,644.999 --> 00:23:30,294.999 And then that kinda gives you a bit more confidence about yourself, like getting the diagnosis or getting identity. 210 00:23:30,294.999 --> 00:23:35,374.999 It's not like a negative trend or negative that I use a thing yourself. 211 00:23:35,374.999 --> 00:23:42,204.999 It's just that something that can help and it's something that's very positive and that goes against the grain of way society can be. 212 00:23:44,919.999 --> 00:24:11,699.999 It might always have previous history of being cast in a worse light that diagnosis is an improvement on, with all the caveats about how the label affects your options, that it may be a step up from the previous. 213 00:24:13,689.999 --> 00:24:24,499.999 Youth psychiatry handling and records no, no, not understanding way the fashion and worse. 214 00:24:25,379.999 --> 00:24:26,819.999 There'll be in some cases. 215 00:24:29,819.999 --> 00:24:30,29.999 Yeah. 216 00:24:30,39.998 --> 00:24:35,289.998 I suppose getting the, getting the kind of rubber stamp on a diagnosis, getting it done by a professional. 217 00:24:35,749.999 --> 00:24:39,9.999 Does give you a bit of control over the label. 218 00:24:40,409.999 --> 00:24:49,749.999 So instead of being difficult or highly strong, or I could go on with the various negative labels I had applied to me over my formative years. 219 00:24:51,959.999 --> 00:24:57,889.999 You kind of in a way it's almost like two fingers up to everyone who thought you were doing it for attention or whatever. 220 00:24:58,554.999 --> 00:25:06,184.999 It's like, no, I'm not difficult, I'm, I'm, I'm not annoying, I'm not stuck in my ways, I'm not stubborn, whatever, okay, maybe I am stubborn. 221 00:25:07,154.998 --> 00:25:08,354.999 It's because I'm autistic. 222 00:25:09,254.999 --> 00:25:17,525 What you're describing is diagnosis as a way of escaping misdiagnosis, either social other diagnoses or even medical diagnoses.
So the thing I think people worry about when they're coming to diagnosis late in life is this kind of imposter syndrome.
.999And the idea that maybe, maybe they're not autistic and should they get diagnosed and do you need a formal diagnosis to like officially be autistic? And generally in the community self diagnosis is completely valid.
(00:21):
There's something quite uniquely autistic about correctly self diagnosing yourself is not the sort of thing you do like in the pub.
or over a cup of tea, like, I don't think anyone who's self diagnosed or self identified, another term as autistic has done so lightly.
.999And there are tests, there are tests online that you can do and I don't want people to think that this is like, oh, Dr.
(00:46):
Google, diagnose yourself online, but some of these are really, really good, like, really, really accurate.
So there's a website called asptests.
org, that's A S P I E.
T E S T S dot O R G.
It's not a particularly flashy website.
There's, it's basically just one page with some links to different diagnostic tools.
(01:09):
There's the RADS R, the RITVO, Autism Asperger Diagnostic Scale Revised.
That comes up in a pub quiz, I want credit.
And the Autism Spectrum Quotient, the AAQ, which are both pretty reliable.
They, so they've tested the validity of these tests. 16 00:01:29,249.999 --> 00:01:30,630 They being the scientists.
(01:30):
And there was a study in the Netherlands where people took the RADS R, which is the first one.
on AspieTests.
org.
And 80% of people that were identified as autistic from that test went on to be formally diagnosed by a clinician.
So it's, it's fairly accurate.
.999It will also, when you do these tests on AspieTests.
(01:52):
org, it will show you like where your results fall compared to a neurotypical population and then compared to diagnosed autistic people.
And it does split it by gender.
So you can see where you, according to these tests, I, I scored higher or within the range of autistic men and yeah, and then I went on to be diagnosed.
(02:14):
So I think they're fairly fairly accurate.
The imposter syndrome thing is like, I think everyone has that as well.
And I know I certainly did before I got into the community a little bit more.
I wasn't gonna.
(02:36):
not self identify as autistic if I, you know, but I just, I didn't feel like I was kind of allowed in inverted commas to, to signpost people or to give advice or to respond to questions about being autistic until I had that bit of paper.
But what I learned from being in the community for much longer now is that self identifications like really valid and accepted being formally diagnosed, being formally diagnosed can be.
(03:05):
Kind of a privilege, really.
It's not something that's open to everybody.
There are There are cultures around the world where autism isn't even really recognized as a thing.
There are places where it's stigmatized.
There are places where the culture kind of precludes diagnosis on some of the traits of autism because of cultural differences.
(03:26):
.9So the getting diagnosed as autistic is, is a very Western thing.
Like the, it exists in diagnostic manuals that are US and Europe centric. 39 00:03:36,945.1 --> 00:03:43,585 So the rest of the world does not have diagnostic standards that take into account other cultures.
So that's one of the issues.
(03:46):
There's also issues with waiting lists.
.999It can take, I don't know, four or five years sometimes to get diagnosed on the NHS and there's no guarantee then that the diagnostician that you see will have an up to date understanding of autism in adults.
So you may wait for years to see someone to get diagnosed and they have an outdated idea of what autism is and you miss out on that diagnosis. 44 00:04:12,634.999 --> 00:04:14,725 It can cost a lot of money to get diagnosed.
(04:14):
.999So there's a financial barrier there as well.
.999And there are, there are other barriers or other unintended negative effects of diagnosis that I didn't even think about until after I was diagnosed.
.9So there are countries in the world that you can...
cannot emigrate to, or it's incredibly difficult to emigrate to, and you have to give a lot more proof than anyone else applying to move to, if you're autistic.
(04:42):
.001I'm wondering, Liz, if you've brought up a lot here, and maybe we should sort of interject some of our own experiences of some of the things you've already brought up. 50 00:04:57,560.001 --> 00:05:18,125.001 I mean, when we go back to what you first were about with imposter syndrome, for instance, I think That's really brave that you've expressed that out there, and I think, don't think it, I don't think it's in people's heads. 51 00:05:19,925.001 --> 00:05:42,285.001 It's this thing about trying to validate the truth of looking into autism for yourself without having an outside diagnosis, isn't it? Do you see where I'm coming from? Is that what you're meaning here? Right at the beginning. 52 00:05:44,730.001 --> 00:05:49,740.001 In what you're saying is concerns that it might not be a good idea sometimes to get diagnosed. 53 00:05:49,740.001 --> 00:05:52,860.001 Is that true? Yeah, I think there are things that... 54 00:05:54,610.001 --> 00:06:04,130.001 Not everyone's aware of these issues even existing before they get diagnosed and it's worth knowing some of those ahead of time. 55 00:06:04,620.001 --> 00:06:10,510 It's like you really feel there's a whole load of stuff people definitely need to know about this before they make decisions. 56 00:06:10,930.001 --> 00:06:20,660 Do you see where I'm coming from? You really, you really have a passion to tell people an awful lot and make them consider and think about an awful lot before they go anywhere near this.
(06:22):
I just think the information should. 58 00:06:24,805.001 --> 00:07:03,165.001 Should be out there and talked about so that it's the people can access him and make up their own mind Yeah, I think like if you're if you're a parent You get diagnosed later in life that could cause issues with social services and with and with even with schools and teachers as well I mean not that a teacher would have access to her parents medical records But if that that information can sometimes bring a lot of stigma in and then that causes problems And you might end up with social services coming around and checking that you're a fit parent even though you know That's a real concern, and that's come up recently. 59 00:07:04,65.001 --> 00:07:22,65.001 That's come up recently in one of the online forums I'm on, in somebody actually asking about diagnosis for themselves as parents when their children are being diagnosed, and getting social services involved to help them as autistic people with their parenting. 60 00:07:22,105.001 --> 00:07:28,215.001 And people have been turning around to them and saying, Whoa, whoa, whoa, watch, watch what you're doing before you invite... 61 00:07:28,560.001 --> 00:07:30,310.001 Social services into your life. 62 00:07:30,850.001 --> 00:07:36,500.001 You know, you are technically both now identified as two disabled, vulnerable people. 63 00:07:37,420.001 --> 00:07:37,790.001 Yeah. 64 00:07:39,380.001 --> 00:07:51,990.001 Technically under the law, whether you be in your late twenties and an intelligent and holding down a job, if you're both autistic and both that's on your records, you, you, you're putting yourself in a situation. 65 00:07:53,775.001 --> 00:07:56,885.001 My wife and I have concerns about this. 66 00:07:56,995.001 --> 00:08:00,265.001 I am diagnosed she is not. 67 00:08:01,465.001 --> 00:08:11,965.001 There is more chance of her being listened to, as we progress into our old age, as an undiagnosed woman than myself as a diagnosed male. 68 00:08:14,965.001 --> 00:08:17,925.002 The, the, the stereotypes that go with me as I grow older. 69 00:08:17,980.002 --> 00:08:22,680.002 I mean, I start to lose autonomy in the system because I'm diagnosed. 70 00:08:25,310.002 --> 00:08:26,400.002 These are the sort of issues. 71 00:08:29,400.002 --> 00:08:31,420.002 There are real negatives to being diagnosed. 72 00:08:34,420.002 --> 00:08:36,910.002 Yeah, no, I think that's a really valid point. 73 00:08:39,600.001 --> 00:08:47,204.902 When you're, yeah, I mean, hopefully by the time, hopefully by the time we're at the point where... 74 00:08:49,225.002 --> 00:08:52,345.002 You know, getting into old, old age attitudes will have changed. 75 00:08:52,605.002 --> 00:09:00,765.002 That's kind of one of the reasons why I'm vocal about stuff is to, to change perceptions and change the stereotypes that we have. 76 00:09:00,975.002 --> 00:09:01,455.002 Me too. 77 00:09:02,155.001 --> 00:09:02,815.001 Absolutely. 78 00:09:02,855.002 --> 00:09:03,315.001 Me too. 79 00:09:04,395.001 --> 00:09:14,955.002 And, and some of the other people that I know that are starting as late diagnosed people to speak out or not in podcasts and in any kind of forums, that is our concern at this moment. 80 00:09:14,955.002 --> 00:09:26,950.002 And that's, that's, that's, Why we need to show sometimes people think that a diagnosis will help them overcome the imposter syndrome and obviously it does. 81 00:09:26,950.002 --> 00:09:31,330.001 That's kind of validation is the antidote to imposter syndrome. 82 00:09:32,660.002 --> 00:09:38,420.002 But people sometimes say, Oh, if you're diagnosed, you can get support services to that. 83 00:09:38,440.001 --> 00:09:40,610.001 I would say what fucking support services. 84 00:09:43,460.002 --> 00:09:45,920.002 I have received nothing as far as I can work out. 85 00:09:48,920.002 --> 00:09:52,220.002 Like, yeah, there aren't any the support I've had. 86 00:09:52,250.002 --> 00:09:53,600.002 I've paid for right. 87 00:09:53,650.002 --> 00:09:53,920.002 And. 88 00:09:55,55.002 --> 00:09:59,625.002 I didn't need to give any paperwork to my counsellor, you know, I haven't needed to hand over any proof, ever. 89 00:10:01,605.002 --> 00:10:13,525.003 The support I got was from Morris and having an organisation and being introduced through Morris to other organisations and then ending up making a, this wider self support group that's Autistic Radio has become. 90 00:10:16,525.003 --> 00:10:28,855.003 Yeah, we only get support when we find it ourselves, and we don't need to prove, we don't need to prove our neurotype in order to get help from our peers, because we can, like, we can sniff each other out. 91 00:10:29,625.002 --> 00:10:30,465.003 That sounded wrong. 92 00:10:33,465.003 --> 00:10:42,105.003 Yeah, yeah, yeah, but where would we find our peers without, well, without the scene, or we can, without recognition, or we can, I suppose, without diagnosis. 93 00:10:45,105.003 --> 00:10:45,835.003 Yes, you're right. 94 00:10:45,925.003 --> 00:10:47,335.003 Morris, you're absolutely right. 95 00:10:47,345.003 --> 00:10:48,965.003 That is an imperative we have. 96 00:10:49,285.003 --> 00:10:55,985.003 We cannot find our scene, but I don't think diagnosis really is a, is, is the gatekeeper to that. 97 00:10:58,985.003 --> 00:10:59,875.003 No, it shouldn't be. 98 00:10:59,985.003 --> 00:11:00,505.003 Yeah. 99 00:11:02,235.003 --> 00:11:07,845.003 No, I, no, I don't think diagnosis is, and I, I've certainly never seen anybody. 100 00:11:08,425.003 --> 00:11:12,375.003 Insist that somebody show their diagnosis and unless they're assholes doing it. 101 00:11:13,325.003 --> 00:11:15,445.003 Is that happened ever to you, Morris? You, you... 102 00:11:18,445.003 --> 00:11:28,435.003 Well, I've, I've, I've had support with employment placing, which has worked out much better than the competitive job search system. 103 00:11:28,825.003 --> 00:11:32,405.003 And it's, it's, it certainly wasn't that service's own fault. 104 00:11:32,425.003 --> 00:11:39,25.003 It's just their funding that obviously was, my diagnosis made me eligible. 105 00:11:41,515.003 --> 00:11:44,659.903 So, yeah, occasionally there are things at work, you know. 106 00:11:45,190.003 --> 00:11:46,590.003 But you're, you're not required to. 107 00:11:48,380.003 --> 00:11:51,530.003 But to get accommodations in the workplace, you don't need proof of diagnosis. 108 00:11:53,820.003 --> 00:11:58,220.003 Well, I'm talking about actually getting the work at all, that's yeah. 109 00:12:00,220.003 --> 00:12:05,790.003 He was in a scheme where they were actually particularly aiming for autistic people and giving them a, a, a way in. 110 00:12:07,20.003 --> 00:12:11,180.002 And they insisted that you hand over your medical records in order to obtain that employment. 111 00:12:14,180.002 --> 00:12:19,830.002 They knew from me being registered in the one stop shop that I was diagnosed, just check the box. 112 00:12:21,370.002 --> 00:12:23,260.002 Perfectly civil, perfectly civil. 113 00:12:24,400.002 --> 00:12:27,960.002 But it kind of was a requirement, is what we're saying. 114 00:12:28,860.002 --> 00:12:30,640.002 Well, that seems a little bit discriminatory, to be honest. 115 00:12:33,600.002 --> 00:12:40,630.002 But irrelevant of that, there were very few things that are out there, whether you're diagnosed or undiagnosed and diagnosis doesn't particularly help you. 116 00:12:42,220.002 --> 00:12:57,610.002 No, I've given over my diagnosis report once in order to get, be accommodated in the workplace and it, I don't know whether it worked against me or not, but I didn't get any accommodations and they were not, you know, I wasn't asking for anything ridiculous. 117 00:12:58,790.002 --> 00:13:00,790.002 It's not about diagnosis for me. 118 00:13:00,840.002 --> 00:13:04,610.002 The big thing is about realization. 119 00:13:04,660.002 --> 00:13:12,180.002 And once you realize that you're autistic, you are on a journey to trying to make head or tail of it for you personally. 120 00:13:12,560.001 --> 00:13:18,40.002 You know, not to be an expert in autism, but to be an expert in your own autism. 121 00:13:18,330.002 --> 00:13:24,860.002 And links that it has to other people's autism is a way of exploring it and it helps your peers. 122 00:13:26,635.002 --> 00:13:33,155.002 I don't, what we need is a way of getting to our peers, it's not more diagnosis. 123 00:13:36,155.002 --> 00:13:37,355.002 It depends who you are. 124 00:13:39,5.002 --> 00:13:50,395.002 Some people do find that the diagnosis, it's not as proof, but as it's like a, dare I say, a qualification. 125 00:13:52,925.002 --> 00:14:03,475.002 I know what everybody's saying about, you know, the diagnosis and the model and all that, but some people feel that they need that, so it's validated in their head, not to prove to anybody. 126 00:14:03,695.002 --> 00:14:08,985.002 It's just so that they're convinced within themselves they've got an answer of some kind, and then they work on. 127 00:14:10,645.002 --> 00:14:13,975.002 But then they can build on that as they wish. 128 00:14:13,985.002 --> 00:14:23,415.002 I mean, there's someone that I know that is looking to go through the diagnosis pathway. 129 00:14:24,635.002 --> 00:14:34,795.002 But it's not going out to prove to anybody or to make it, they feel the more if they get that, the more autistic and the people that are autistic that don't have diagnosis. 130 00:14:34,985.002 --> 00:14:38,385.002 It's just more for a self sort of assurance in their head. 131 00:14:39,205.002 --> 00:14:42,175.002 So there's a lot of people out there that prefer that. 132 00:14:42,385.002 --> 00:14:43,15.002 model. 133 00:14:44,985.002 --> 00:14:46,995.002 So it kind of helps them. 134 00:14:48,385.002 --> 00:14:51,685.002 But other people believe that it's not necessary. 135 00:14:52,145.002 --> 00:14:54,525.002 They don't feel the need to validate their cell that way. 136 00:14:54,545.001 --> 00:14:55,325.002 They can go through. 137 00:14:55,765.002 --> 00:15:01,25.002 Like, for instance, those Aspie tests, like I actually tried one of them. 138 00:15:02,425.002 --> 00:15:03,835.002 It was one of the 40 questions. 139 00:15:03,845.002 --> 00:15:05,115.002 I can't remember what one it was. 140 00:15:05,335.002 --> 00:15:06,659.902 I've been the third one down. 141 00:15:07,500.002 --> 00:15:19,50.001 And I just thought I'm going to give this a try, see what's, you know, what it's like and confirmed that I may be autistic and I should seek professional advice. 142 00:15:21,830.002 --> 00:15:22,910.002 Well, that must have been a relief. 143 00:15:24,620.002 --> 00:15:25,780.002 Well, I didn't say it like that. 144 00:15:25,780.102 --> 00:15:28,220.002 But I know the language is quite funny. 145 00:15:28,450.002 --> 00:15:37,35.002 I would say that it was kind of a recommendation and, I encourage someone that I know to, to use that particular one because I had. 146 00:15:38,145.002 --> 00:15:39,585.002 So they've went down that they are taking. 147 00:15:42,585.002 --> 00:16:00,835.001 Realising I'm autistic and now, no, how do I say this? It's not the diagnosis, it's not the time between realising you might be autistic and it's something you want to get into and discover. 148 00:16:01,645.001 --> 00:16:31,315.001 And the diagnosis that it's the whole period of time that you are going to upset in your life, that the largeness of realizing you are autistic and then realizing that you have a choice to make about getting diagnosed or not, that thing in itself is already huge and almost all of it is finding out about autism, other autistic people. 149 00:16:32,365.001 --> 00:16:48,105 What it's like going back through your own history, and that's not going to be particularly supported, whether you have a diagnosis or not, and you're going to have to do that, whether you get diagnosed or not, that's the important thing.
(16:51):
It feels often before you get diagnosed as though there is something to attain there, but the reality when you look back in hindsight is that that wasn't the important thing.
It was the realization and then the gradual research to get an understanding of what autism is personally for you.
(17:14):
.999I'd like to recant my assertion that my diagnosis, having the diagnosis, has never...
given me any access to anything, because I think having that bit of paper is the only reason I got to keep my ESA for the year that I was allowed to have it, because the person doing the assessment, this was back in, it must have been pre pandemic, so I actually went to her place and she asked to photocopy my diagnosis paperwork, and I think that's the only reason that I kept, that they carried on paying it.
(17:43):
for the contributions based that and the blind rattled and I jumped out of my skin, which was pretty obvious, like, it's clearly, I'm either autistic or I have quite severe anxiety disorder.
.999That's the thing as well about the diagnosis thing. 156 00:18:01,449.999 --> 00:18:19,140 It's the way that autism is treated in terms of, it's the support in terms of Or the associated anxiety you have because you've got autism and you've not been able to find any kind of work, so you need to sort of go down the sort of negative.
(18:19):
I know back, you know, kind of sidetracking a little bit, but that's the sort of the culture you're up against.
It's got support there, but you've got to put autism, or your autism in a certain way, in a certain model.
Basically, there's something wrong with you because you've got autism and you need financial support because of that.
I mean, that's difficult to ask of somebody.
(18:40):
I mean, that's why I get ESA, you know, I get and that's based on because I have that diagnosis of autism.
And that is one of the absolute good reasons, because autism in some systems around the world is a disability and people's experience of it can put them in a position where through no fault of their own, they're not available for work as work is offered.
(19:10):
In the system.
So that is a very good reason.
Yeah, that is the, that is the bit of support that there is, that exists.
.999Well, that's a pretty key one and I mean in capitalism.
I don't even know what it is.
(19:34):
Employment Support Allowance.
.9So Employment Support Allowance is about 20 quid a week more than JobSeeker's Allowance if you're unable to work temporarily or full time because of a disability or health condition and you have to provide doctor's notes regularly until you're assessed and then even after you're assessed.
You are then put into one of two groups.
(19:57):
You may get the higher rate if you have mobility challenges as well as non mobility challenges.
Otherwise you're put into a, it's a whole, it's just like jumping through hoops and it's a lot of work.
There in, in some systems around the world, insurance benefits employments allowances, all kinds of different benefits from the state might be in place if you have a diagnosis.
(20:22):
So that is a different consideration.
Yeah, and this is something that can last a half a lifetime as well.
.999Yeah, it's a tiny bit from the state to try and deal with the discrimination you're gonna have in the workplace.
Yes.
(20:43):
And the inappropriateness for the workplace for most autistic people.
Yeah, well that's true.
Going down to diagnosis personally, that is a different, that's a different world, that's a different subject, isn't it? And what it means to you and...
How much it removes from you your autonomy could be a very important thing for you.
(21:09):
How you end up having to still do all the work to really understand yourself might not be apparent.
It might look as though you're going to get some kind of ticket to go and join some services or some outside activities that make you meet other autistic people, but they're few and far between.
(21:30):
.001And you, the better ones are really organized autistic people themselves anyway.
.999The forums are better that are organized by autistic people. 186 00:21:39,914.999 --> 00:21:43,774.999 The charities generally are more eye opening.
.999When you, when you realize you're autistic, it's getting amongst other autistic people and listening to them and hearing, even the factional talk amongst them is more important than your time spent dealing with professionals. 188 00:22:02,689.999 --> 00:22:03,729.999 Yeah, I agree. 189 00:22:04,769.998 --> 00:22:05,119.999 But I'm not. 190 00:22:06,729.999 --> 00:22:07,959.999 Late diagnosed. 191 00:22:07,959.999 --> 00:22:09,489.999 I was diagnosed early. 192 00:22:11,729.999 --> 00:22:15,269.999 I was 17 and I was still living at home with parents. 193 00:22:15,269.999 --> 00:22:18,569.999 So, and there was support there, there was different support. 194 00:22:19,489.999 --> 00:22:19,989.999 In fairness. 195 00:22:20,769.999 --> 00:22:21,229.999 In fairness. 196 00:22:21,349.999 --> 00:22:24,469.999 It wasn't just the autistic support I was gonna mental health. 197 00:22:25,34.999 --> 00:22:25,414.999 services. 198 00:22:26,4.999 --> 00:22:35,854.998 But the autism one was, there were social groups there at the time and they had a certain, it was a structural society and it was just, it was all built in. 199 00:22:35,894.999 --> 00:22:40,804.999 But what I'm aware of was since then, I mean, I'm talking back in 999. 200 00:22:41,839.999 --> 00:22:43,179.899 It's all been withered away. 201 00:22:43,179.999 --> 00:22:47,119.999 It's all been, funding's been taken out of a lot of these things. 202 00:22:47,159.999 --> 00:22:50,839.999 So, a lot of these things no longer exist. 203 00:22:51,129.998 --> 00:22:53,229.999 There's certainly not as many as there used to be. 204 00:22:54,549.999 --> 00:22:58,359.998 And if you're late diagnosed, it's probably not the best place to go. 205 00:22:58,359.999 --> 00:22:59,569.999 It depends where you are. 206 00:22:59,609.999 --> 00:23:03,939.999 I mean, if somebody is living alone, that may be something you might want to do. 207 00:23:04,629.999 --> 00:23:14,194.999 But, as you say, because if something's run by a charity, for instance, it's professional led, it's probably not the thing that, That some people would wanna go to. 208 00:23:14,194.999 --> 00:23:23,644.999 It's like you wanna speak to people and b, actually, dare I say, inspired by some that, that artistic and that leads something. 209 00:23:23,644.999 --> 00:23:30,294.999 And then that kinda gives you a bit more confidence about yourself, like getting the diagnosis or getting identity. 210 00:23:30,294.999 --> 00:23:35,374.999 It's not like a negative trend or negative that I use a thing yourself. 211 00:23:35,374.999 --> 00:23:42,204.999 It's just that something that can help and it's something that's very positive and that goes against the grain of way society can be. 212 00:23:44,919.999 --> 00:24:11,699.999 It might always have previous history of being cast in a worse light that diagnosis is an improvement on, with all the caveats about how the label affects your options, that it may be a step up from the previous. 213 00:24:13,689.999 --> 00:24:24,499.999 Youth psychiatry handling and records no, no, not understanding way the fashion and worse. 214 00:24:25,379.999 --> 00:24:26,819.999 There'll be in some cases. 215 00:24:29,819.999 --> 00:24:30,29.999 Yeah. 216 00:24:30,39.998 --> 00:24:35,289.998 I suppose getting the, getting the kind of rubber stamp on a diagnosis, getting it done by a professional. 217 00:24:35,749.999 --> 00:24:39,9.999 Does give you a bit of control over the label. 218 00:24:40,409.999 --> 00:24:49,749.999 So instead of being difficult or highly strong, or I could go on with the various negative labels I had applied to me over my formative years. 219 00:24:51,959.999 --> 00:24:57,889.999 You kind of in a way it's almost like two fingers up to everyone who thought you were doing it for attention or whatever. 220 00:24:58,554.999 --> 00:25:06,184.999 It's like, no, I'm not difficult, I'm, I'm, I'm not annoying, I'm not stuck in my ways, I'm not stubborn, whatever, okay, maybe I am stubborn. 221 00:25:07,154.998 --> 00:25:08,354.999 It's because I'm autistic. 222 00:25:09,254.999 --> 00:25:17,525 What you're describing is diagnosis as a way of escaping misdiagnosis, either social other diagnoses or even medical diagnoses.
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