Experiences of parents and carers of young trans and gender diverse people
Autism and neurodiversity
Neurodiversity refers to the idea that people are naturally diverse learners and the way they communicate and experience the world differs. Such differences are an expression of the variations of the human brain. Neurodiversity encompasses conditions such as attention deficit hyperactivity disorder (ADHD) and autism (the medical name for autism is Autism Spectrum Disorder). Despite the medical language, being neurodiverse is not a medical condition, or a mental health issue, but some neurodiverse people might need support to help them with certain things.
The exact relationship between autism and gender diversity is not known and researchers do not think there is a link between the two (Turban & Schalkwyk, 2018).
In our interviews, we talked to four parents whose trans or gender diverse children were also neurodiverse. In addition, one mother we spoke to shared her experiences of having a younger trans daughter and an older autistic daughter. In this section, you can find out what they said about their experiences.
Josie talks about her daughter’s neurodiversity and how she feels the Gender Identity Development Service sometimes expects young neurodiverse people to do ‘something that they can't do.’
Josie talks about her daughter’s neurodiversity and how she feels the Gender Identity Development Service sometimes expects young neurodiverse people to do ‘something that they can't do.’
She didn't have any diagnosis of anything while we were at the [Gender Identity Development Service]. She, she's now been diagnosed with attention deficit disorder. And she does have some presentations that look a little bit like autism, although she doesn't have a diagnosis of autism. And I'm absolutely convinced that the [Gender Identity Development Service] therapists thought that she was autistic and thought that [ding] people who have autism can have a rigidity of thinking, as you know and they can have these kind of obsessions with things, special interest with things. And I'm, I'm absolutely convinced that they, that that was counting against her being just taken at face value as being a trans young person, definitely. Further to that, I think that the elements of her personality that mean that that kind of social chit-chat or talking about feelings or anything like that that's part of her make-up. I think that the system, what the way that they, that they wanted to do things that it was, that was really, really difficult for her, because what they want to do in GIDS is they want to talk to you and they want you to talk about what's going on inside you and how you feel about things. And that's actually very, very difficult for somebody who has any of those neuro atypical feelings, because what she likes to do and I think this is really common for people with ADD and autism is she likes to talk about things that interest her. So, you know, whatever it might be she likes to talk about ideas. She likes to talk about her special interests. She doesn't like talking about how she feels or it, it's really hard for her to do. And I think that was then read as not participating in the, the process. So I think, I think given that the high numbers of young people, you know, with autism who, who are also trans that's definitely something that they really ought to, they ought to be looking at, because if the thing they need the young people to do is something that they can't do then that just doesn't really work.
In our interviews, many parents and carers were aware of the link between gender diversity and autism. Many agreed that because of this link, the Gender Identity Development Service (GIDS) needs to take into account the varied needs of young people who are both trans and autistic. Some parents worried this was not being done sufficiently. Oonagh observed that she ‘heard lots of different things’ that ‘if the child's got autism, for example and they're in the service… they seem to get treated differently to say, somebody that's not got any mental health problems or autism or anything.’ She stressed that the service needs to believe young people when they say they are trans, regardless of their family history, mental health history, or neurodiversity. Oonagh worried that when her adopted daughter is seen by GIDS for the first time, the service may look for a cause of her being trans in her past experiences, rather than accepting that she is.
One mother we talked to felt strongly that her daughter’s neurodiversity worked against her daughter in her dealings with the Gender Identity Development Service (GIDS). She also thought that the format of the GIDS appointments and activities, where the young person is expected to talk about their feelings – something, with which autistic people might struggle with – was not well suited to neurodiverse people. For example, she described how her daughter was encouraged ‘to join their [GIDS] young people's group… Now she's neuro atypical, she doesn't like to chat. She doesn't want to talk about gender anyway. So she didn't want to do that. They were really putting pressure on her to do it.’
Find out more about people’s experiences with the Gender Identity Development Service.
The relationship between neurodiversity and gender diversity can be difficult to understand for parents. While there is no proven causal relationship between being trans and autistic, one father felt that his child’s autism was central to how they felt about their gender. He emphasised: ‘We knew there was a degree of autism… So, she tells us this [that she is trans] and trying to piece together the bits of the journey ...there was a GP visit… I flagged up the autism issue within the GP visit… cos I’d done a little bit of reading when this [gender identity] first came to the fore that the link between gender dysphoria in autism was very pronounced and well documented. So the only thing I thought, hang on, let’s just understand what’s going on. Let’s get the big picture.’ Other parents we spoke to described how knowing their child was autistic helped them understand them and the difficulties they experienced better. This was the case for E and D, whose adult trans son was diagnosed with autism.
E and D talk about their trans son’s autism and how getting the diagnosis helped them make sense of things.
E and D talk about their trans son’s autism and how getting the diagnosis helped them make sense of things.
Mother: We took him on the recommendation of some colleagues to see a psychiatrist at our local [name of a hospital] who was very good. It was very good. And changed his antidepressants. Realised that he had a major problem with sleep and had for years and gave him some sleep medication, but also recognised that there was a lot of initially thought he had an emotionally unstable personality disorder and recommended dialectical behaviour therapy, which was a course, sort of three months on management. It was a really good course for managing emotions and learning how to kind of manage your time and manage stress and your interactions, which I think he benefitted hugely from and he did over that summer. But, at the same time, the psychiatrist was very astute and said, ‘I just wonder if actually one of his problems is that he could be on the spectrum, could be autistic.’ So, we thought about that. And, and it was very interesting because various people in our family and my cousin who is a—we discovered that they had thought so too. So, we thought, this could explain a lot of the anxiety and issues. So, we eventually, he had, he stayed under the [name of a hospital] and had his therapy continued and was doing well. But we did get the formal assessment done, which confirmed that a diagnosis of ASD [Autism Spectrum Disorder] and I think that’s been really helpful to know. It makes sense for a lot of behaviour.
Father: It did. We’ve since learned that there is an association between ASD and gender dysphoria.
Mother: Certainly, that’s what the psychiatrist said. And I then read a lot more about it since then. There’s a huge, there’s I think one of the psychologists who did the assessment also works at [name of a place] and she said, ‘The number of people at [name of a place] who are on the that I see in my clinic there you know, have ASD and have gender dysphoria, the overlap is huge. So, it made a lot of sense to us. Yeah, it really did.
Father: That’s true.
Mother: So, it was kind of like the last piece of the jigsaw.
In some circumstances, having an autistic sibling can present challenges to the young trans or gender diverse person. Oonagh whose older daughter is autistic and younger daughter is trans, spoke about how the family is trying to be as open about her younger daughter’s gender identity as possible. She shared that her trans daughter worries she might be outed by her older sister, who ‘says it as it is’.
Oonagh talks about the relationship between her daughters.
Oonagh talks about the relationship between her daughters.
It's really, it's like you get black and white, you get really black and white with her. She just says it as she, as it is and [name of participant’s child] has to deal with it. So she'll say, ''How can you be, how can you be a girl?'' She says, ''This is my sister, [name of participant’s child].'' She accept her as being [name of participant’s child] my sister, you're my best sister ever and all this stuff. And then if a discussion happens where we're talking about puberty or periods or anything like that, cause my older daughter just recently started her periods. So, “well you know about periods, cause you, you've got a penis”. You know, she'll say it as it is. She's quite straightforward. And then we have to explain to her what, try and explain to her what it means to be trans and I suppose that's some of the, some of the things that we've mentioned and talked about in terms blockers and puberty and all these things, explaining to her, actually, that's how it's come about. We've explained in quite sort of simple terms to [name of participant’s other child] and then as a discussion as a group then we can explain it between us. We've talked as a little family about it [laughs]. Cause [name of participant’s other child] is so open, so in your face with everything. She's, you know, she's examining, I know this is like you might want to look through this, but she's examining her sanitary towels and I think everything is out in the open. You know, it's like, [name of participant’s child] wants to wear them, sanitary towels. You know, she's wanting to put them in [laughs]. It's quite funny. Yeah, she's challenging, because I worry about that as well, because they are gonna go to the same school and I know [name of participant’s child] is thinking she doesn't wanna go to the same school even though it's the best school for LGBT support and things in the area. She's thinking she doesn't want to go to the school because of [name of participant’s other child], because she knows, I think she knows that [name of participant’s other child] is gonna out her, because [name of participant’s other child] can't help herself. She'll be like, ''Uh, she used to be a boy.'' She'll will out her. I know she's going to. That is on the cards. So, yeah, there's that worry, cause she, yeah. So I think the best thing is to be open about everything, because it's gonna be, it's gonna be out in the open whether we want it or not. So just trying to make that as positive as possible [laughs].
Find out more about what the people we spoke to shared about siblings’ and family members’ responses to their child’s gender identity.
You might also be interested to read about parents’ experiences of having a child who has autism.
* Turban, J. L., & van Schalkwyk, G. I. (2018). “Gender dysphoria” and autism spectrum disorder: Is the link real? Journal of the American Academy of Child & Adolescent Psychiatry, 57(1).