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Does the Shame of Being Neurodivergent Hold You Back? · The Neurodivergent Lens

• 0:00
  Welcome to The Neurodivergent Lens.
• 0:07
  In this episode, we'll be discussing shame and how it can hold back neurodivergent individuals.
• 0:13
  I'm your host, Meryem Hassan, and I'm joined today by my friend and colleague Emma Lord-Jenkins.
• 0:21
  Emma.
• 0:22
  Tricky subject. Shame.
• 0:25
  Does the shame of being neurodivergent impact, and how does it impact lives?
• 0:32
  Big topic.
• 0:34
  [Big topic] Yes it does.
• 0:36
  [Yeah] It is a big topic.
• 0:38
  And we've already discussed trauma.
• 0:40
  And we know that there's an integration between shame and trauma.
• 0:43
  Shame is an interesting one because there's such a thing as good shame.
• 0:48
  And as we mentioned before, there's such a thing as toxic shame.
• 0:53
  So an example that came to me around shame was an experience I had when I was younger.
• 0:59
  And it was, I remember I had done my homework and actually doing homework is a really difficult thing, particularly for somebody who's dyslexic like myself.
• 1:10
  And Look at how messy your handwriting is.
• 1:19
  Go away and do this again and come back to me when your handwriting is neater.” But that phrase shame on you! I remember being bandied about so much when I was growing up.
• 1:31
  Whether it's from neighbors, shame on you for running down the road or running across the road, or shame on you for talking loudly.
• 1:39
  There was a real emphasis on the word shame on you.
• 1:44
  And I don't know if that terminology is still used today, but the sentiment behind that is that I was doing something wrong, and I wonder about that sentiment, or whether or not you've heard that phrase before?
• 1:57
  Yeah, I think probably in my schooling days that was still used.
• 2:01
  I think it depended on the teacher as well.
• 2:03
  Some where more harsh than others.
• 2:07
  These days, from working in a school, I think that I've heard versions of that.
• 2:11
  Maybe it might not be phrased exactly the same way.
• 2:13
  Perhaps teachers are saying things like, why haven't you done this?
• 2:18
  You know, or some, some, some version of that.
• 2:21
  But I think the sentiment is quite similar.
• 2:22
  And the implication is that, well, it's almost punishing the neurodivergent behavioural trait, isn't it, whether they know it or not.
• 2:30
  So yeah, I think it still shows up. Yes.
• 2:33
  And it's something about, again, that link with trauma and how we are shaming.
• 2:40
  Often shame, good shame has been used as a way of, of educating young people to set boundaries.
• 2:49
  And what's a good boundary.
• 2:50
  What's a right boundary, what's not a good boundary.
• 2:53
  You know, it's like you shouldn't talk to somebody like that.
• 2:56
  That's not acceptable.
• 2:58
  That's like, that's how shame is used in a good way, you know, to help somebody create, an appropriate response.
• 3:07
  I think so long as it's explained well.
• 3:10
  Know what I mean?
• 3:10
  I think sometimes people might need that context and understanding behind it if people are just told to behave in a certain way, but they don't really understand why, you know what I mean?
• 3:18
  [Yeah. Yeh.] And it's not based purely on neurotypical standards of communication as well.
• 3:23
  So I agree with what you're saying, but I think, yeah, I suppose it's not good shame if it doesn't accommodate neurodivergent differences, to be fair.
• 3:31
  So that goes back to the point of language and how we communicate.
• 3:35
  You said that actually today perhaps it's communicated differently, but shame is still very present.
• 3:43
  This is a really important subject because again, shame is in a way it's invisible, and neurodivergent individuals will internalise their shame.
• 3:53
  And often, as we know, girls mask a lot more than boys do.
• 3:58
  And so there is something about the way shame shows up for for girls or neurodivergent individuals.
• 4:05
  So we know that shame, alongside trauma can create that very powerful internal, critical or internal negative voice.
• 4:16
  We know that shame and trauma can create, skewed self identity and self-concept, often self esteem.
• 4:25
  I mean, one of the ways that I've seen this show up, particularly with the adult, neurodivergent individuals that I work with, is that they don't feel worthy enough to be able to go for that job promotion, go for a better job.
• 4:42
  They don't feel worthy enough.
• 4:43
  They don't, they feel inferior.
• 4:45
  A word that often comes up with, particularly with dyslexic individuals, is that sense of feeling inferior to others.
• 4:53
  Yes, definitely, and I think that's true of ADHD and other neurodivergences as well.
• 4:58
  And I think by the time you've got to the workplace, if you've had years and years of feeling that shame and not working through it, then of course it's going to show up and affect you in different ways.
• 5:07
  And yeah, like you said, it might be about not going for that promotion, it might even just be about not getting stuck in and involved to the same extent as your colleagues because you don't want to fail, and then feel that shame all over again.
• 5:19
  And so, yeah, I've definitely experienced that too, as a, as a professional and also witnessed it working with clients and the years.
• 5:25
  One of the things that we understand is some of the neurodivergences are easier to spot, for instance, sometimes autism, not always, but there are certain traits within autism that may show up and be more visible.
• 5:41
  And there is something about when something is more visible, how much shame can be attached to it, or how much that individual may incur shame or shaming experiences because of it.
• 5:55
  Yeah, so thinking about autism, obviously it could present very differently, and this, you know, big variation in traits.
• 6:02
  But just an example thinking about, so I work with a lot of clients who are neurodivergent and support them into employment.
• 6:08
  And in the interview process, quite often a typical Q&A interview isn't a brilliant fit for neurodivergent people, but there's that kind of neurotypical expectation around, communication and body language.
• 6:20
  So giving eye contact, for example, isn’t comfortable for everybody, but there can be a lot of shame around not maintaining eye contact or not responding in a certain expected way, which I think can create a lot of shame.
• 6:32
  But it's also not fair to set that same expectation on everybody.
• 6:35
  I think that's very true.
• 6:36
  And there is something about the culture within an organisation that actually welcomes or alienates, [Yes] neurodivergent individuals.
• 6:47
  And, I'm just recognising how difficult it would be for somebody who is autistic to perhaps break down some of those already established cultural barriers that may exist within an employ, you know, employment environment.
• 7:02
  There's a real discrimination there, [mm hmm] in kind of cultural bias.
• 7:07
  [Yeah] I think particularly in employment environments.
• 7:10
  [Yes] towards people who are autistic or maybe have some other kind of visible disability or visible, traits or condition, more obvious condition.
• 7:21
  Yeah, and particularly more obvious communication differences.
• 7:24
  And I think that's prevalent right from the very beginning in the recruitment and interview phase that can be a barrier.
• 7:29
  So, you know, even before somebody is employed and gets to the workplace, that interview process can throw up obstacles that are particularly hard for for some autistic people, and other neurodivergent people as well.
• 7:40
  A lot of that is around. Yeah.
• 7:41
  Standards, of communication.
• 7:43
  Yes, yes.
• 7:45
  So there's a piece of research which was done in 2022, that suggests 50% of hiring managers would not employ neurodivergent talent.
• 7:55
  It's a huge, huge number, but also, worryingly, that was only in the last five years and there is still that mindset and that bias continuing in the world that we live in.
• 8:09
  Yeah.
• 8:09
  [It’s unbelievable] I've come across that and the highest level of bias apparently is towards ADHD and Tourettes syndrome, but it's also interesting that with dyslexia, I think I've seen quite a few studies that reference 75% of people who are dyslexic won't disclose it in the workplace.
• 8:24
  So there's two different issues there isn’t there?
• 8:26
  There's kind of that misconceptions around different neurodivergences and how people behave or whatever.
• 8:32
  and also people feeling a lot of fear around disclosing because of stigma and discrimination I guess.
• 8:38
  I'd be worried about how they're going to then be treated in the workplace because they've disclosed, so, yeah, So the message that that is putting out there is that it's another way of othering people.
• 8:49
  That sense of you don't belong.
• 8:51
  We don't want you.
• 8:53
  And actually, we can't make you fit into our world.
• 8:58
  - it's a neurotypical response.
• 9:00
  Yeah, there's definitely a culture of, of fitting into what's already there rather than trying to value unique differences and what the gaps are in the team and how that's going to strengthen the team in the workplace I mean. And that's a really important point as well, is valuing difference and how that actually fits in.
• 9:18
  If we continue, or if people are continued to be shamed for their differences, and we're saying that actually, well, you're not welcome and we can't find a place for you, whether it's in an educational institution or in an employment institution.
• 9:35
  And actually thinking about educational institutions, I'm thinking there are so many ways that neurodivergent individuals are just let down and not supported.
• 9:45
  it’s... You're nodding.
• 9:45
  Yeah.
• 9:47
  Sorry you just made me think of something called “affinity bias”.
• 9:50
  It's a type of unconscious bias, and this is the kind of training that workplaces could definitely do with, but across the board as well in education.
• 9:57
  So affinity bias is when you might value someone or favour somebody because you relate to them, so they’re ike you.
• 10:03
  So if you get hiring managers, looking for people with very similar traits to them and they get the job, then you're going to have a whole team of very similar neurotypes, for example, and then you won't have that balance of neurotypes, which is actually really good for business.
• 10:16
  But that's an unconscious bias a lot of the times, until you are made aware of that, that habit won't change, and that's why that training is so important.
• 10:24
  So that's what I try to build into my neurodiversity training, but it can also be separate.
• 10:28
  You can have unconscious bias training as a separate thing for, you know, hiring managers, recruitment, for example, but it is quite, quite linked I think.
• 10:35
  [Yeah] So reflecting on does the shame of being neurodivergent hold you back?
• 10:41
  My feeling is that there are so many aspects of a neurodivergent persons' lived experience that does hold them back, because the way they are portrayed, is kind of in a way weaponized against them.
• 10:58
  And, and actually, there is something more here as well.
• 11:02
  And I think it's really important, but a subject that often doesn't get broached, which is when we think about the different intersections in life, and that means thinking about, well what if you have a neurodivergent person who's black or from a black minority ethnic group?
• 11:19
  [Yep] What if you have a neurodivergent person who's black or from a minority ethnic group and has a disability as well?
• 11:27
  What if you have somebody who is, English isn't their first language?
• 11:34
  I mean, there are all of these, or you know, they come from a different culture.
• 11:42
  There are so many different intersections in life [Yeah] that overlap with neurodivergence [Definitely] and those things can feel that they are weaponized against neurodivergent people.
• 11:55
  So I've worked with young people to support them into work, and they typically have a learning disability and other form of neurodivergence, so quite often a learning disability with autism, for example, I mean that's two intersecting conditions for, for one thing.
• 12:10
  But also I'd have people who might yeah, culturally there's different cultural expectations around neurodiversity.
• 12:16
  Maybe not as much recognition around some types of neurodiversity.
• 12:19
  You might also have people with different economic, financial circumstances, [Yes] you know, so all kinds of things.
• 12:25
  And of course that can, yeah, all of these things can intersect and compound each other and make things more difficult.
• 12:30
  There are so many life challenges that impact an individual.
• 12:34
  And I undertook a piece of writing not too long ago, and one of the bits of research that I came across was the level of neurodivergent individuals in a prison population [Oh yeah] and I was utterly stunned.
• 12:50
  [Yeah] The percentage of that was between 30 to 60% of the prison population.
• 12:56
  [Yes] were neurodivergent.
• 12:58
  So so what it brings me to is this point about how certain structures and institutions don't understand neurodivergent individuals, aren't geared towards neurodivergent individuals’ needs and therefore become biased towards them.
• 13:16
  [Yes] The thing that I'm aware of is how the institutions and the structures within society impact neurodivergent people in negative ways and are biased against them Institutions such as education, healthcare, the police, training institutions, lots of different systems that do not have the appropriate information or knowledge around how to deal with neurodivergent people, then become biased towards them.
• 13:50
  For me, what becomes important is how shame becomes the overriding nemesis for a neurodivergent individual, particularly when we're talking about institutions, whether it's healthcare system, whether it's educational institution, whatever institution it is, the nemesis, that inescapable[burden] burden that inescapable challenge, that inescapable agent that holds the person back is actually present within the structures that exists around them.
• 14:21
  Yeah, that's interesting because it comes back a little bit to that disclosure thing I was saying earlier as well, you kind of either way, you might come up against disadvantages if you disclose and then might be treated unfairly, or you don't disclose, then might not get the support or understanding that you need With the when you were talking about the 75% of dyslexics not disclosing?
• 14:39
  Yeah, but generally you know, there's lots of people who might not disclose a neurodivergence in different settings, such as any of those institutions that you mentioned, for fear of being treated differently, and, you know, either way, that can be a problem.
• 14:52
  You just made me think of an example and, I'm just checking in on myself to see if I feel okay with sharing this actually, and maybe I will, because I think it would be really useful for our listeners.
• 15:07
  in the past year or so, I had a procedure in hospital.
• 15:12
  And what was really interesting was when we were talking about medication, and because I'm dyslexic, but also because I have a heightened sensory response, medication actually doesn't really agree with me.
• 15:27
  And whenever I've spoken to different, throughout my life to different doctors or, health professionals, the impression I've got from them is that, oh, you're quite sensitive or you must have a sensitive constitution, or there's been a sense of what's felt quite disparaging about what they're saying to me.
• 15:48
  [Yes] And actually, I found one consultant I thought was absolutely brilliant.
• 15:53
  Her words to me were, “you are chemically sensitive”.
• 15:58
  I was talking to her about being neurodivergent and I said, would this have an impact on how the medication works on my body, the side effects that I experience, would this have an impact?
• 16:09
  And she said, “Absolutely.
• 16:11
  You're chemically sensitive.” And there isn't enough awareness raising or education that happens in the healthcare system [No] so that they can be mindful of that.
• 16:21
  And it made me think of all kinds of things like pharmaceuticals.
• 16:25
  They're producing all these medications at certain strengths or efficacy and yet there are neurodivergent individuals in the population that probably experience very perhaps harsh or heightened responses to that.
• 16:40
  But you just made me think that, you know, isn't it great that you can self-advocate?
• 16:44
  I mean, it's a shame.
• 16:44
  it got to that point and you should have had that information all along, but you can advocate for your own needs, and you can say it and you can articulate questions like that.
• 16:52
  Not everybody has the same level of resource or access to tools and support, and might not, therefore have a very difficult experience and not find out that maybe the medication isn't quite right, but by you being able to, you know, and I'm in the same position, I feel quite privileged to somebody with a diagnosis of ADHD, with the support and the knowledge that I've got.
• 17:10
  So we're in a really good position to be able to do that, but not everybody is [No, I agree] and that’s a real shame.
• 17:15
  But then that's the whole point of what we're doing, isn't it, to try and raise awareness amongst, neurodivergent and neurotypical people?
• 17:22
  I agree, and if there are any listeners who have had similar experiences or want to share some stories regarding what they've experienced, or how shame shows up in their life and what's held them back, I'd really like to hear about that because your point about, being able to advocate for oneself, being able to find your voice is so important.
• 17:44
  But yes, there are so many people who can't find their voices, who are shamed or silenced into being very quiet, or don't know or just don't know what language to use.
• 17:56
  Particularly if you've got a doctor sat in front of you or you've got professionals sat in front of you [People in an authoritative position] ..yeah This is making me think of it's a good time to talk about the gifts, because that's one really good example, isn't it?
• 18:09
  Being advocates, I think that being a neurodivergent advocate, we're in a really good position to do that.
• 18:15
  You know, we don't speak for everybody, but we're certainly in a position with lived experience and professional experience where we can be really good advocates for ourselves and for others and demonstrate what that can look like.
• 18:26
  I, I agree with that.
• 18:28
  That's part of the passion that I feel about bringing these podcasts out into the world is that in a way, we are being advocates I feel for more neurodivergent individuals that don't have a voice or have been shamed into a non-voice, but I would love there to be so many more neurodivergent advocates, you know?
• 18:51
  And, perhaps that would be a neurotypical friend, you know, who would be an ally from neurodivergent individuals.
• 18:59
  [Absolutely] And yes, in terms of the gifts, it's like, I suppose one way of looking at it is shame can be very overwhelming and overpowering, but we've touched into how resilient neurodivergent individuals can be [Yep] and the challenges and struggles that they experience in life.
• 19:24
  And one of the things is, is that we are able to perhaps work through and understand those shaming experiences, work through what belongs to somebody else and what belongs to myself.
• 19:37
  And having that experience then can put you in a, in a more strengthened position rather than actually coming from that place of vulnerability, you know, that place of where people have been bullied in the past.
• 19:53
  But a real strength is actually working through the shame and being able to stand in one's own shoes.
• 20:00
  Interestingly, when we consider does shame hold you back as a neurodivergent individual, I think yes, it can, as we've talked about, but also I think our experiences and difficult experiences can also propel us forward.
• 20:12
  So, for example, I've got a friend who's ADHD and in school was told that he wouldn't amount to anything.
• 20:18
  He had trouble, you know, meeting deadlines, exams, all that kind of thing.
• 20:22
  And now he is a successful business owner.
• 20:24
  And years later, he saw the teacher who told him that in hospital - just had like a fractured wrist or something, and he felt an immense satisfaction in being like, well, actually, my creativity and, you know, aspects of my neurodivergence might be why I've got to where I am.
• 20:38
  So I think it's quite interesting, it can go both ways.
• 20:41
  Yes. I can see how that would go and how it would go both ways, and actually, [To prove yourself] and how often Yeah, how often do we hear that people, people through that adversity and that challenge actually rise [Exactly] and work through the shame and, and there is a two point thing that I want to make here in a way, it's that shame can hold people back because or neurodivergent individuals back because they can spend a lot of their life or their time trying to please other people.
• 21:12
  [Yeah, absolutley] That shame, that guilt, that burden, that weight of badness, can mean that neurodivergent individuals dedicate huge amounts of time to pleasing others and to being unable to say no.
• 21:26
  [Yes] But when somebody is able to actually really work through that, understand what that shame is about and that it doesn't belong to them, it's an external shame that's being put on them.
• 21:39
  [Yeah] then you see people starting to find their “yes”, you see people starting to find their voice and starting to create their authentic self.
• 21:49
  [Yeah, define success on their own terms and not by, you know, societal expectations of success I think that's really empowering] So, your friend although may have felt something in the moment, perhaps in a way, and may have felt shamed that they weren't going to amount to anything, but they found their resilience and found their own voice and thought, well, I'm going to do this my way. I'm going to work to my strengths.
• 22:13
  It was almost a source of motivation I think in that instance - it isn't for everybody, [No] I can appreciate that, but for him it, yeah for him he managed to turn it into something positive, which is amazing because you don't you know, that's a really difficult thing to do.
• 22:25
  Yes, it's an incredibly difficult thing to do.
• 22:28
  But it's also an amazing thing to do.
• 22:29
  And there is so much creativity and uniqueness that we know, within neurodivergence, and yet we don't want to make it sound like everybody who is neurodivergent, has got some kind of superpower, [No] because we know that also isn’t [It’s a balance always] Yeah, it's not realistic, but [Challenges and strengths, I think that's really important to recognize both] But far too often I think the emphasis is placed on the deficits and the, you know, the perceived deficits, the impairments, and not so much on the strengths and unique qualities.
• 23:01
  So there's definitely room to focus on that more.
• 23:03
  [Absolutely] But yeah, I agree with you, the superpower narrative has its own challenges.
• 23:05
  I'm sure we'll get to that, but So the positive thing about working through shame is that it gives people their lives back.
• 23:13
  And actually it gives them power, control, onus, but it really allows people to step into their authenticity, and really and truly embody their authentic self.
• 23:26
  Yeah. That's nice.
• 23:26
  And I think it's reframing your experiences.
• 23:28
  So for example, I'll look back now on all the things I was ashamed of previously, and I can reframe it and always tell a different story, but a more accurate story because I know what was really going on.
• 23:38
  So you're right, that's much more empowering.
• 23:40
  Thank you for joining us today.
• 23:42
  I hope that you will join us next time as we delve further into more conversations around neurodivergence.
• 23:48
  And don't forget to share your stories with me.
• 23:51
  And if you liked what you heard, then subscribe, and let's keep the conversation going on neurodivergence.