Mum, I am in the wrong body. These are words you are more likely to hear if your child is autistic. According to psychologist Dr Wenn Lawson, individuals with autism spectrum conditions are seven times more likely to live with conflicting gender and sexuality issues, and 20% will experience gender dysphoria compared to 1% of the typical population.
What is gender dysphoria?
Gender dysphoria is a condition where a person experiences discomfort or distress because there is a mismatch between their biological sex and gender identity. ‘It’s important to know that anatomical genitalia does not make the gender identity of that person. The biological sex could be male while the gender identity could be female and vice versa,’ Lawson explains.
What is transgender and cis-gender?
A cis-gender person identifies as the same sex as their anatomy. Trans means across from that, although the person may not necessarily have gone through a medical reassignment. Trans does not mean transitioning, it’s the end result, ie you are trans-gender not cis-gender.
How do I know when to take this seriously?
Children may show signs from an early age – such as refusing to wear the clothes or play with the toys stereotypically assigned to their gender, or wanting to be called by a different name. For some this will be a phase, but when this persists, it may indicate gender dysphoria. Research by the Tavistock Clinic in London which treats transgender children, says that a child who identifies as another gender at puberty is more likely to persist with it than those saying it as a pre-schooler.
Of those children with gender issues in early childhood, 25% will identify as transgender in adolescence.
‘If they are still identifying strongly at puberty we know it is not a phase,’ Lawson says. The average age of referral to the Tavistock is 14, with only a small percentage seen before that age.
But it is further complicated in autistic children because developmental delays may mean they present physically as one age, but socially and emotionally are at a younger age. You need to look at where they are on the developmental ladder rather than their age, Lawson advises, in order to decide on the best course of action.
Parents are also faced with the difficult task of separating out expressions of gender mismatch from typical autistic traits such as obsessions and special interests, or fixating on someone to copy.
‘In autism these things can get muddled,’ says Lawson. ‘Neurotypical children can tell the difference between male and female by the age of four. But autistic children will pick out the detail of people, for example what the nose looks like. And object permanence – knowing something is there even if you can’t see it – is typical by 18 months in neurotypical children but delayed in autism. Those kind of things impact on gender identity.’
High functioning autistic children are particularly likely to copy another child in the class, in an effort to learn how to act; and girls moreso than boys - 40% of autistic girls follow other children like a shadow compared to 10% of autistic boys, Lawson says. In addition, gender is a social construct which autistic people, less fettered by the cultural domain, are not as likely to recognise, Lawson says.
All this aside, the chances are that where it is a genuine expression of gender dysphoria, you will already have some inkling. We spoke to two parents about their experiences of autistic children coming out as transgender (see below) and both said they always knew something was amiss, but didn’t know quite what.
What did we do wrong?
Nothing you did or didn’t do will have changed the way your child feels about his or her gender. ‘It’s life stuff, and people should understand from the start it is nothing that they did which makes this happen,’ says Lawson. From his work with 700 transgender children, Lawson says fathers typically have a harder time accepting it.
Equally Lawson says, it is not a mental illness, and ‘some kids really need reassuring about this’.
How is gender dysphoria diagnosed?
Health professionals look for a marked difference between the individual’s physically apparent gender and the gender they believe themselves to be, which has persisted for at least six months, and which causes ‘clinically significant distress or impairment in social, occupational and other important areas of functioning’.
Lawson says assessments can tease out when the child prefers the idea of another gender for autistic reasons, such as the sensory appeal of opposite gender clothes, or copying another’s gender in an attempt to fit in, from cases where gender dysphoria is present.
Visits to a clinic like the Tavistock begin with assessments and counselling, and only a proportion of young people attending will go on to medical treatments. ‘For a small number of young people physical treatments can be very helpful to reduce the real distress they experience around their gender. Not all will fulfil the criteria for a diagnosis of gender dysphoria and not all of those will decide to transition,’ says Polly Carmichael, consultant clinical psychologist at the Tavistock.
What can parents do?
Your GP is usually the first port of call for referral to other services. Psychotherapy may be helpful for treating co-occurring mental health issues and exploring the child’s thought processes, which are often delayed and out of sync with biological age in ASD, Lawson says.
Puberty blockers can buy time so that adolescents can continue exploring their gender identity without the added stress of a puberty that is inconsistent with their self-identity.
Hormone blockers have no long term effects, and once stopped, puberty will continue.
Lawson recommends giving the child a personal policy to keep themselves safe – identifying when it is safe to wear a dress for example, and teaching them about safety in numbers, and somewhere they can go where they will be safe. Autistic people typically find it difficult to work out consequences, so it is advisable to work out lots of eventualities and how they should respond.
He also recommends introducing them to other autistic people who are trans so they know they are not alone (try the support group Mermaids).
Lawson warns that children can be at their most vulnerable between coming out (as transgender) and getting treatment.
How should we broach this with school?
It is important to get your school on board as soon as your child feels ready to. Many schools are now adopting transgender policies. The Boarding Schools Association has issued guidance to teachers, and a number of schools, including Brighton College in the independent sector and around 80 state schools, have introduced gender neutral uniforms. If you feel your school lacks awareness, the Mermaids website has a downloadable schools toolkit.
One of the most sensitive areas to consider is use of school toilets and changing rooms. An easy solution might seem for the transgender child to use the school’s disabled toilet, but this may cause further distress, as Lawson relates when this was suggested to one child: ‘This young person responded with hurt and disbelief. Her reply was “but I’m not disabled, this is normal for me”.’
If your child changes his or her name, you should also check that this name can be used for any exams he or she is registered for, as certificates will be issued in the registered name. And you should ask schools how they plan to deal with any homophobic bullying.
What are the top five things a school can do to help a transgender child?
Parents who have been through this told us the priorities should be:
1. Listen to what the child needs, and act on it.
2. Always refer to the child by their chosen name and gender.
3. Act immediately if there is any bullying, regardless of how minor it may seem.
4. Offer a contact person for them to speak to if they have any issues.
5. Train all staff and raise awareness and understanding among students (ensure if people do or say stupid or hurtful things it is by choice, not through ignorance, and crack down on it).
What if I support this then my child regrets changing gender?
It’s a real and understandable fear for parents, and a huge responsibility. However the statistics are sobering, that there is far greater risk of self-harm and suicide than regretting the decision. ‘The regret rate for those who have undergone gender transition is 1-2%, whereas 40% of individuals living with gender dysphoria will attempt suicide,’ Lawson says.
Around 50% of those with gender dysphoria self-harm, and Lawson says this typically stops when someone transitions.
One parent who has been through the experience told us: ‘I now have a very happy daughter who is looking forward to going to university next year, instead of a miserable, frustrated son. The more challenging behaviour traits she had, which we had always put down to the Asperger’s, appear to have been reduced – we no longer have the same number of meltdowns and tantrums, and she is much better at coping with social situations. I firmly believe that this is a combination of coming out as transgender and the supportive environment in which she has spent her first college year.’
We asked two parents to describe their experience, and how they went about dealing with school, when their children (both of whom have autism) came out as transgender. Names have been changed to protect identities.
How did you feel when your child told you he or she was transgender?
Alison: My child sat me down during the second week of his GCSEs and said that he was transgender and wanted to go to college as a girl. My first reaction was to say ‘okaaaay, what can we do to help?’ I wasn’t overly shocked, as I knew something was going on but didn’t know what. He asked me to tell his dad which I did; this was the point at which I did have a little cry. It wasn’t because he was transgender, but having Asperger’s and going to mainstream school meant that he’d had a fairly rough time with bullying, and I was just worried about how he would cope with yet more challenges. I was also upset because he had been coping with these feelings by himself for as long as he could remember but couldn’t articulate them until he was a teenager.
Suzanne: My child left me a note on the cooker to find after he left for school telling me when he turns 18 he wanted to live as male. I was really sad that he felt so bad in his own body; scared about the great unknown opening up before us; and mostly just really upset that he wasn't at home for me to hug.
I had suspected for many years that we might be coming to this point but without really knowing what 'this point' was. I knew very little about the term transgender and only ever thought of men transitioning to women. I had certainly never heard of gender dysphoria – I looked it up later that day.
I got a private message sent to him at school to make sure that he knew I loved him and it was OK and we would work it through together and then I went to find a friend at work and cried a lot. I was surprised at how upset and kind of shocked I was considering it wasn't a surprise but it was fear for his future making me upset. There are already things which make life difficult for him (he has Asperger's and a tendency to black moods and anxiety) and I just want him to be safe and happy. I wondered if he would make a lot of changes regarding gender but yet still not be happy because that wasn't the only source of his anxieties.
I was also a bit worried how to explain it to my husband, he would not have seen it coming as he doesn't understand the workings of our child as much as me and hasn't seen his interactions with other children as much.
What is the best thing parents can do at this point?
Alison: Don’t panic! It’s a really steep learning curve, but if your child has told you that they are transgender then they are already way ahead of you. Be led by your child, and don’t worry about what other people think.
Suzanne: I was glad that my child wasn't there to see me breaking down and crying. I got all the tears out before I saw him later that day so I could just hug him and be really cool and calm. I would say, whatever you're feeling you can talk through with them later but in that moment of 'coming out', your child will be at their most vulnerable and they don't need talk, they just need to know that you love them, accept them and are there for them. Don't worry about not having all the answers.
What are the clangers to avoid doing?
Alison: The main mistake is not accepting your child for who they are. If you’re not supportive then that leads to secrecy; many trans adolescents self-harm. Also, try to use their preferred pronouns and name – it’s hard to get used to at first but they do appreciate the effort.
Suzanne: Asking them to tell you all about their plans – they may not have thought much past telling you. Telling them they are too young or telling them all your fears - plenty of time for that discussion later when emotions are calmer. Reacting emotionally - my husband couldn't cope with the shock so he got angry. And panicking. Give it time to settle in, get yourself informed, knee-jerk reactions are usually not helpful.
Where did you start to get help for your child, and how good was this?
Alison: My daughter had already looked up all of the information we needed, so within a couple of weeks we had an appointment with our GP. The GP was supportive, and referred my daughter to the Tavistock and Portman clinic within a short space of time. The Tavistock gave us an appointment within the 18-week NHS limit, and there were several appointments before they referred her to adult services. We were very happy with the service we received from them.
Suzanne: I can't even remember the first search term I used as I didn’t know any of the correct vocabulary. I found my way to the NHS information on gender dysphoria and it felt much better having a name and a condition and something recognised by health professionals. When I told my child the term he was also relieved saying it meant he wasn't a freak, there were other people who felt the same way as him.
Within the first day I found Mermaids [support group], sent a message and got a ‘phone call back. It was so comforting to be able to talk to a person who knew about the issues we would be facing and made it all sound so normal. I was a little freaked out when she started talking about hospitals and bodily changes however – I hadn't thought that far ahead. They sent me loads of stuff by email which helped me to get some context to what was happening.
What advice can you offer about dealing with your own emotions around it?
Alison: As far as I was concerned, my child was still my child, so I just wanted her to be happy. It does help to know that you aren’t on your own – you feel very isolated until you find out just how many families have trans children. Find a support group, I started with Mermaids then went to a local support group as well.
Suzanne: Talk to people you trust, and get informed which helps with the emotions. Mermaids is amazing, especially the secret Facebook page as you can say or ask anything and get nothing but 100% support and understanding, even if you're ranting or crying at the keyboard. I was honest with my child in that I told him how I was feeling and the thoughts and emotions I was working through. I felt it was important for him to know that we needed time to process just as he did but I never showed those emotions to him. Your child has enough of their own and shouldn't have to carry yours. They should know that you are on an emotional journey with them though as it helps them to be willing to open up and talk to you.
What advice can you offer about telling extended family, neighbours etc?
Alison: Follow your child’s lead and tell other people when your child is ready. Don’t apologise, just calmly tell them that your child is now known as ‘new name’, and is transgender. Offer support and information if they want it. My experience is that everyone was very accepting apart from one person. Sadly, that person decided that they couldn’t deal with the situation and is no longer part of our lives.
Suzanne: We have been hugely blessed in that everyone has been very supportive and that our child allowed us to do it all slowly and to make no sudden changes. It also helps a lot that he was a very mature 14 when he first spoke to us and 15 before going public so people knew it was his decision and not ours. I think it must be immensely hard to do it with a young child as many people will judge the parents. That first day I told my Mum, my husband, a friend at work and my church leader and his wife. I knew they would all support me through the emotional turmoil and would love and accept my child. My husband told his parents who studiously avoided all mention of the conversation. Everything else was very slow release.
My child told a handful of friends and once he'd chosen a new name he tried it out with them for a few months, next he unexpectedly told his Explorer Scout group when they were on camp (that shocked them all and caused a minor short term panic about which tent he should sleep in!). After a few months once my child was sure about the new name I told my brother and his family and the other grandparents.
The big change came when I wanted to adopt the new name and pronouns. I'd waited because my husband was having a hard time coming to terms with the changes and was very fearful. I'd discussed it with my child who understood and supported my decision to give Dad time to come on board so we could walk this journey together and not cause tension in the family. I told my church first and very quickly then it was right to transition everywhere so I spoke to the school. After the transition was done there I began telling various people who are likely to come into contact with my child and knew his previous name. I've tried to do most of them face to face so people can pick up of my calmness and ask questions if necessary.
How quickly you should tell school, and what is the best way to approach them?
Alison: As my daughter was coming to the end of year 11 at school when she came out, she decided not to tell them as she only had a few weeks. She did, however, email her prospective college and explain that she was trans. She also asked what would be needed in order to register in her preferred name, and what support they offered trans students. I didn’t have to do anything as she wanted to deal with it herself.
Suzanne: How quickly really depends on what your child wants to do. For us it was a full year from the first note to the social transition, we really took our time and our child was OK with that. For others, the dysphoria is much more acute and the need to transition quickly is apparent.
Choose a trusted point of contact and put everything through that person. In our case it was the pastoral officer who had already been supportive of my child when they were having some emotional/anxiety issues, and who I had dealt with and knew to be very good.
How did your school react?
Alison: Her college has been fantastically supportive. She enrolled under her new name and gender, and this is how she started on the first day. The staff took her to one side on her enrolment day and told her all about the support offered, and asked her if there was anything else she needed to be done. They also have an LGBT group, and this year they have set up an additional lunchtime group for trans students. They have also asked a local charity, which supports transgender people and their families, to come along and give a talk on their work.
Suzanne: We met with the pastoral manager and she was very honest about not having been through this process before and asked that we bear with them if they made any mistakes. She thanked me for the Mermaid’s schools pack as everything was in there for them, every legal question answered, guidance on things they might not think about. It made them feel much more confident. They thought through a timeline which included training staff and changing signs on toilets and asked my child a lot about what he wanted and how he wanted people told. They asked for half a term to get things in place and we corresponded regularly over that time with her keeping us up-to-date with progress and ensuring my child was given time to think about what he wanted said.
School handled the whole situation very professionally, very efficiently and were very proactive. The toilet and changing for PE situation was sorted within days to my child's wishes, even before the social transition.
Dr Wenn Lawson was speaking at a masterclass on gender dysphoria for the National Autistic Society
Video about transitioning – Australia’s Transgender Pre-teens http://www.youtube.com/watch?v=baIDLK9G2fI
Mermaids offers family and individual support for children and teenagers with gender identity issues