The young people we spoke to talked about their experiences of neurodiversity. Neurodiversity refers to the idea that people are naturally different in the way they learn, communicate and experience the world. Neurodiversity includes attention deficit hyperactivity disorder (ADHD) and autism.
The exact relationship between neurodiversity and, in particular, autism and gender diversity is not known. Research on autism and gender diversity suggests no reason why the two often occur together (Turban & Schalkwyk, 2018)*. Read more about experiences of autism.
Some young people also shared their experiences of disability and disablism in healthcare settings. Disablism is when people are treated as if they are inferior because they are disabled. Some people with multiple identities described being disabled as one of a number of forms of discrimination they experienced as well as being trans, gender diverse and a person of colour. The topics of discussion covered:
- Experiences of autism and discrimination
- Experiences of ADHD
- Experiences of chronic illness and disabilities
Experiences of autism and discrimination
A few people we spoke to were autistic. Some had extra needs when it came to expressing themselves and this affected their meetings with healthcare professionals. Bailey said, ‘I just get on with it. I’m like quite high functioning still. Obviously I still have my problems. But, if I can’t say something, I’d write it down then I give it to the person’. He said he hasn’t had ‘a lot of help for my autism, to be honest…it’s not like I’m severely autistic and need a lot of help for it [but] I still have problems [I] find it hard to talk and don’t understand emotions, [and] kick off like I’m four.’
Theo says being autistic has had a major effect on my lifeI find it difficult to defend myself sometimes.
Rosa talks about her difficulties in healthcare settings not having a formal diagnosis’ or autism.
Summer describes the validation she feels realising she is autistic.
Other young people talked about sensory issues like being sensitive to touch. Kat said, ‘I get a lot of sensory issues regarding food and stuff… for soft stuff I just can’t, it makes me gag, if I even look, kind of touch or anything.’ Rosa described how she didn’t like the feeling of wearing make-up due to sensory issues. However, Cas felt being autistic ‘hasn’t really impacted me that much.’ He spoke about his experience of getting information about trans healthcare; ‘when it comes to understanding complex information… I am quite good at being able to understand and memorise and use that information in a way that benefits me’. Read more about experiences of sensory issues.
Rosa describes not wearing make-up due to having sensory issues with how it feels on her face.
Autistic young people talked about the discrimination they experience in healthcare settings and with professionals. In particular how health professionals sometimes did not believe their gender identity. Declan said, ‘When I was a teenager [being autistic] was intrinsically linked to my gender identity [and] the fact that I thought I could never be seen as who I actually am… made me incredibly low’. Bailey’s message was ‘just cos you’ve got autism, it don’t mean you don’t know what you’re talking about. You still know what’s what.’
Bailey says I’ve been told in the past that I’m not actually trans, it’s just because I have autism.
Some people described how healthcare professionals had infantilised (treated them as children) and belittled them. Rosa said her psychologist said ‘he thought I was autistic [and started] using that to try and infantalise me and remove any autonomy I had about anything and then to try and use that to try and bar me from seeking the healthcare that I needed.’ Shash said, ‘I feel like it happens a lot with autistic people, where they’ll be knowledgeable of what their needs are and what care they need, but doctors won’t listen to them purely because they feel like, “Oh this person’s autistic, they don’t know what they need.”
Michelle talks about trans people who are neurodiverse being terrifiedthat their autism diagnosis could be held against them.
G says “there are massive problems with the way that neurodiverse people are treated [in healthcare]”.
Experiences of ADHD
Some people talked about their experiences with ADHD. Michelle said, ‘I got diagnosed with ADHD like a month ago… and now parts of my life have got a whole new context.’ She reflected on previous experiences throughout her life ‘where a combination of ADHD related stuff and also being a deeply closeted trans person… resulted in depression and anxiety.’
Michelle talks about her assessment for ADHD and the validation of having it confirmed it just sort of all clicked together.
Michelle shares a story about when she felt her ADHD helped her’ achieved something exciting.
A talks about their experience getting a diagnosis for ADHD and finding the right medication.
Experiences of chronic illness and disability
A number of young people we spoke to identified as disabled and talked about their experiences with healthcare. Beth said, ‘I do identify as disabled but it really depends on… what context I’m talking in’. They said ‘I think people don’t understand invisible disability’. They said ‘when I am writing a bio of myself for something, I’m like, okay, so I am queer, and I’m non-binary, and I’m a parent, and I’m disabled’. For some, being disabled meant having different needs when it came to transition. Jack said ‘I have fibromyalgia which makes it quite painful to bind sometimes so often I do skip out on binding because it’s too painful or restricts my ability to kind of move around’.
Erion talks about his experience of sickle cell anaemia and the assumptions of healthcare professionals.
Ari talks about having Hypermobile Ehlers-Danlos Syndrome and how it impacts their transition and healthcare experiences.
Jack talks about their experience of fibromyalgia and how it impacts binding because it’s too painful.
Disabled young people talked about feeling no sense of control or power with healthcare professionals and settings. Safia talked about their experiences of being non-binary and having chronic illness. They said ‘[it] happens with chronic illnesses in general, but it’s made worse if a) you’re Assigned Female At Birth (AFAB), or read as a woman, and b) if you’re a person of colour. Your experiences with it and healthcare are so often dismissed, pain is so often dismissed.’
Ari described feeling a lack of control in their healthcare; ‘being someone who’s chronically ill and disabled… I already don’t have an awful lot of control over my body. It will give out on me every now and again [so]… it’s quite frustrating ‘cos it’s another level of power and control that I don’t have over myself’.
People also talked about the stigma attached to certain conditions. Beth talked about having fibromyalgia, chronic fatigue and endometriosis stating ‘they are all illnesses that people don’t really believe in, so my entire existence is not real, in a lot of sense. You know non-binary people don’t exist, I’m too young to have endometriosis, fibromyalgia’s a made-up disease [and] chronic fatigue… well everyone gets tired’. They said ‘it’s one of those things where it’s just a constant [but] do you know what? I don’t have to validate myself to you’.
Safia talks about their experience of chronic illness and having their pain dismissed by healthcare professionals.
Beth talks about experiencing Endometriosis and the impact as an AFAB non-binary person.
A few talked about the lack of knowledge and understanding of healthcare professionals when it came to disability. Ari felt it was important to ‘educate doctors… and bring them up to speed with the latest terminology and treatment pathways that lets you have a little bit more of that power back… it helps me feel more in control, at least if I know that the doctors I’m talking to, have the best information they can possibly have’. Patrick said, ‘I know that some people have a really hard time accessing trans health care because of the interplay between [being trans] and being disabled but there are a lot of disabled trans folk who have successfully navigated the trans health system… so it is possible.’
Jaz talks about disablism in healthcare and the need for depathologised services.
Beth talks about the value of online communities for queer people with disabilities.
For further information on disability rights visit www.disabilityrightsuk.org
* Turban, J.L. and van Schalkwyk, G.I., 2018. “Gender dysphoria” and autism spectrum disorder Is the link real? Journal of the American Academy of Child & Adolescent Psychiatry.