Help for a non-binary, self harming 16 year old

Hi,

I'm new to this platform and reaching out as a worried mother of a 16 year old, who I'm pretty certain has autism though we have not yet sought a diagnosis.

My child has always been different to other children – unsettled and barely sleeping from day one, separation anxiety as a baby (would not be held or cared for by anyone other than me or my husband), utter fear and then disengagement with nursery aged nine months (after lots of crying would go into a complete other-worldly daze and would not be able to recognise me for several seconds when I came to pick her up), eventually settled better with a childminder in a quiet setting, slow to speak yet hyperlexic and reading fluently by age 5, avoids social situations whenever possible, sensitivity to things like labels on clothes, intense obsessions with things like musicals, TV shows, etc, the list goes on. It wasn't until I read about autism in girls when my child was about 11 that I twigged, and then everything seemed to make a lot more sense.

Having been born female, my child has recently decided to switch to non-binary, change their name and use they/them pronouns. I've tried to be supportive of this but I worry that it stems from feelings of being different, rather than true feelings of gender dysmorphia – it never came up when they were younger. I've read that there's a huge cross over between gender dysmorphia and autism. I wonder if that feeling of not-fitting-in makes the prospect of a non-binary gender seem more attractive, as it makes it more socially acceptable to be different and be proud of it (especially at school where several of their friends are either non-binary or trans). They are using a chest binder and I worry that it could progress further to hormone treatments. 

So far, so so, but this last week, things took a turn for the worse when I discovered evidence of self harm (cutting). My child has also been avoiding food more than usual – skipping meals and not eating nearly enough. The school has also flagged that they're worried about them not eating enough. They have always been thin but they are now pretty skinny (though it's hard to tell how thin as they wear baggy clothes and refuse to be weighed). Their behaviour has become less agreeable – grumpier and less tolerant (though I realise this is not unusual for a teenager!). They prefer to spend as much time as possible alone in their room. I worry about what content they're accessing online and that they are suffering from depression. 

They are excelling academically and they are incredibly good at masking their feelings and pretending to be 'normal' to fit in, which is why not many people have picked up on their problems. They agree that they are probably autistic but they are denying that they have any problem with self harm, eating disorders or mental health (despite me giving them evidence to contrary). They won't or can't talk about their emotions and they won't see a councillor. 

I'm thinking that I should try to get an autism diagnosis as that may open up doors to more support (I realise I'll have to do this privately as the NHS is so slow). However, for a child who is refusing to admit there's a problem, I'm not sure how best to really help them in the here and now. I try to tell them that it's ok to not feel ok, and that having autism can make day-to-day life incredibly hard and emotionally exhausting, and it's understandable that they're struggling, that it's not unusual or wrong to feel bad. However, they just don't seem to want to let anyone in. I've suggested they try to talk to friends or teachers but they won't. I've booked a GP appointment but I doubt I'll be able to persuade them to engage with a doctor. 

I'm really worried that that they will develop full-blown anorexia and sink into a deep depression, all whilst hiding it from everyone who loves them. What am I supposed to do? Has anyone faced a similar situation? Or does anyone know of any councillors I could talk to who specialise in non-binary autistic teenagers, especially those who were assigned female at birth?

Any help or signposting gratefully received as I'm not sure where to turn. 

Parents
  • Well, that's a familiar set of stuff. 

    First of all, I wouldn't worry too much about an immediate 'risk' of them accessing hormonal treatment. They're hard to get, many loops to jump through, and not every non-binary person wants them. I certainly don't. Given that thus far you think your child is showing no signs of wanting to engage with medical help (a problem in itself but we'll get to that) it's unlikely to be an immediate problem. And screening for mental health problems that aren't directly attributable to gender dysphoria can be used to deny a person transition treatment if they think they don't fully understand/may be self destructive. 

    The link between autism and gender-dysphoria has many possible explanations, and it's probably a combination of several. In my very inexpert other than personal experience opinion, it is probably partly to do with the fact that gender is in at least part a social construct and autistic people can often struggle with things that are societally driven. While it took a while to realise it, I was showing many, many signs of discomfort with my gender assigned at birth quite early, but as I also didn't want to be a boy, and wasn't aware of another option. When I learnt about non-binary genders, a lot of things began to make sense. From the outside, it may appear that I was 'converted' or 'influenced' and in a way I suppose I was, but it was more about knowing what was possible. Another example of that for me was that I thought I was broken for not feeling romantic or sexual feelings on boys, until I found out it was possible to feel it for women too, and then a lot of things made a lot of sense. Quite often what appears copying others can be more about discovering the language to describe your own experience. 

    Binding! I am currently wearing my binder. One of the things you can do right now to support your child and keep them safe, is to make sure they have a good quality and safe binder. Most of the horror stories about them are due to poor quality binding or poor usage. I'm sure your child will know the theory of how to bind safely, but good binders can be expensive. One of the best things my mum did for me was help me pay for a second binder, a size up, so I could exercise (moderate only) more safely while binding. 

    Self harm. Oof. You're kid needs to at least have some basic safety stuff, but if they're at the stage where they won't admit it then stopping won't necessarily be something that they want right now, and you need to be aware of that. I'm going to give you a load of links, Some for you and some for your child. I don't know whether they'll want to engage with them, and they may have seen a lot of them already through school or their own research, but there is a wealth of resources out there. 

    Them:

    https://giveusashout.org/get-help/ Shout, a text crisis line. It's the one I use because I can't do phone calls

    https://www.kooth.com/ Kooth. Free online counselling for children and teens. Has loads of information, a forum to talk to other people with similar stuff, and text anonymous counselling with trained counsellors

    https://www.selfharm.co.uk/alumina-online-support-for-mental-health-and-wellbeing  Allumina. Apparently it's amazing, I'd aged out by the time it was really popular so I haven't used it, but I've heard many good things

    https://calmharm.co.uk/ Calm harm app. Very good ride the wave exercises, Have a huge variety of coping exercies

    https://tellmi.help/ Tellmi, previously known as Meetoo. A well moderated peer support app for a wide variety of mh and just general young person life issues

    https://www.expertselfcare.com/health-apps/distract/ distrACT. good info on seeking further support and first aid.

    https://www.youngminds.org.uk/young-person/my-feelings/self-harm/ young minds info

    https://www.themix.org.uk/mental-health/self-harm/self-harm-and-your-relationships-5681.html info on mix

    https://www.mind.org.uk/information-support/for-children-and-young-people/self-harm/coping-with-self-harm/ Mind info

    There will be more locally, these have been my go to stuff in the past, but I've found many other stuff over the years. Things like Shout and Kooth especially will signpost to further stuff.

    At some point, they have to talk to some kind of medical professional to get an assessment on the risk associated with their harming and to get briefed about first aid to prevent unwanted consequences. I know some people feel this is encouraging the harm, it's not, it's really really important harm reduction. You can accidentally get incredibly sick or die from self harm that was not intended to have that consequence. Stopping takes effort and time, and in the mean time it needs to be done safely. 

    You: 

    https://www.youngminds.org.uk/parent/parents-a-z-mental-health-guide/self-harm/ Young minds guide

    https://www.themix.org.uk/mental-health/self-harm/coping-with-self-harm-5692.html Mix guide

    https://www.mind.org.uk/information-support/types-of-mental-health-problems/self-harm/for-friends-and-family/ mind guide

    https://www.wearewithyou.org.uk/help-and-advice/advice-friends-family/self-harm-advice-parents/ 

    https://www.nspcc.org.uk/keeping-children-safe/childrens-mental-health/self-harm/ 

    https://www.children1st.org.uk/help-for-families/parentline-scotland/guidance-advice/understanding-self-harm/ 

    I also want to make it clear that the reason autistic people self harm is not always similar to the reasons self harm. This was a real barrier for me getting help  and currently I am in a position where the mh team won't see me until I get a diagnosis or not because I don't fit neurotypical treatment reasoning or models. Get the ball rolling on your kids assessment. Here are some websites on self harm in autistic people.

    https://www.autism.org.uk/advice-and-guidance/topics/mental-health/self-harm 

    https://www.autistica.org.uk/what-is-autism/anxiety-and-autism-hub/self-harm-and-autism 

    https://www.kooth.com/members.html/magazine/articles/1895ba17-bdaf-43ef-afb2-6b4f96680287 this is a kooth only one so might be for your child only. 

    Eating. The obvious website here is beat. https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/downloads-resources/ 

    I have never experienced anorexia myself, my issues with eating are most closely described by ARFID. However, if you are seriously concerned about your childs weight and it is severe enough that the school is noticing you have to go to the GP and they need to medically assess your daughter. Like physiologically, not just their mental health.

    I've watched a friend develop and then recover from an eating disorder. it is a horrific thing to watch as they continue to complain about every appointment and how they're not ill and everyone is making a big fuss enough about nothing. It took her well over a year after she was mostly better before she would admit that she had had a serious eating disorder. Generally, an anorexia sufferer will not recognise how sick they are until well into the recovery process. This is part of the illness. Beat has a lot of information and a helpline.

    I have to go now,  I hope this was helpful. Feel free to ask further questions, and I'll help as much as I can. I do have and know where to look for more resources if you need them, but your GP should be able to signpost to more local stuff.

    Good luck, you can do this

Reply
  • Well, that's a familiar set of stuff. 

    First of all, I wouldn't worry too much about an immediate 'risk' of them accessing hormonal treatment. They're hard to get, many loops to jump through, and not every non-binary person wants them. I certainly don't. Given that thus far you think your child is showing no signs of wanting to engage with medical help (a problem in itself but we'll get to that) it's unlikely to be an immediate problem. And screening for mental health problems that aren't directly attributable to gender dysphoria can be used to deny a person transition treatment if they think they don't fully understand/may be self destructive. 

    The link between autism and gender-dysphoria has many possible explanations, and it's probably a combination of several. In my very inexpert other than personal experience opinion, it is probably partly to do with the fact that gender is in at least part a social construct and autistic people can often struggle with things that are societally driven. While it took a while to realise it, I was showing many, many signs of discomfort with my gender assigned at birth quite early, but as I also didn't want to be a boy, and wasn't aware of another option. When I learnt about non-binary genders, a lot of things began to make sense. From the outside, it may appear that I was 'converted' or 'influenced' and in a way I suppose I was, but it was more about knowing what was possible. Another example of that for me was that I thought I was broken for not feeling romantic or sexual feelings on boys, until I found out it was possible to feel it for women too, and then a lot of things made a lot of sense. Quite often what appears copying others can be more about discovering the language to describe your own experience. 

    Binding! I am currently wearing my binder. One of the things you can do right now to support your child and keep them safe, is to make sure they have a good quality and safe binder. Most of the horror stories about them are due to poor quality binding or poor usage. I'm sure your child will know the theory of how to bind safely, but good binders can be expensive. One of the best things my mum did for me was help me pay for a second binder, a size up, so I could exercise (moderate only) more safely while binding. 

    Self harm. Oof. You're kid needs to at least have some basic safety stuff, but if they're at the stage where they won't admit it then stopping won't necessarily be something that they want right now, and you need to be aware of that. I'm going to give you a load of links, Some for you and some for your child. I don't know whether they'll want to engage with them, and they may have seen a lot of them already through school or their own research, but there is a wealth of resources out there. 

    Them:

    https://giveusashout.org/get-help/ Shout, a text crisis line. It's the one I use because I can't do phone calls

    https://www.kooth.com/ Kooth. Free online counselling for children and teens. Has loads of information, a forum to talk to other people with similar stuff, and text anonymous counselling with trained counsellors

    https://www.selfharm.co.uk/alumina-online-support-for-mental-health-and-wellbeing  Allumina. Apparently it's amazing, I'd aged out by the time it was really popular so I haven't used it, but I've heard many good things

    https://calmharm.co.uk/ Calm harm app. Very good ride the wave exercises, Have a huge variety of coping exercies

    https://tellmi.help/ Tellmi, previously known as Meetoo. A well moderated peer support app for a wide variety of mh and just general young person life issues

    https://www.expertselfcare.com/health-apps/distract/ distrACT. good info on seeking further support and first aid.

    https://www.youngminds.org.uk/young-person/my-feelings/self-harm/ young minds info

    https://www.themix.org.uk/mental-health/self-harm/self-harm-and-your-relationships-5681.html info on mix

    https://www.mind.org.uk/information-support/for-children-and-young-people/self-harm/coping-with-self-harm/ Mind info

    There will be more locally, these have been my go to stuff in the past, but I've found many other stuff over the years. Things like Shout and Kooth especially will signpost to further stuff.

    At some point, they have to talk to some kind of medical professional to get an assessment on the risk associated with their harming and to get briefed about first aid to prevent unwanted consequences. I know some people feel this is encouraging the harm, it's not, it's really really important harm reduction. You can accidentally get incredibly sick or die from self harm that was not intended to have that consequence. Stopping takes effort and time, and in the mean time it needs to be done safely. 

    You: 

    https://www.youngminds.org.uk/parent/parents-a-z-mental-health-guide/self-harm/ Young minds guide

    https://www.themix.org.uk/mental-health/self-harm/coping-with-self-harm-5692.html Mix guide

    https://www.mind.org.uk/information-support/types-of-mental-health-problems/self-harm/for-friends-and-family/ mind guide

    https://www.wearewithyou.org.uk/help-and-advice/advice-friends-family/self-harm-advice-parents/ 

    https://www.nspcc.org.uk/keeping-children-safe/childrens-mental-health/self-harm/ 

    https://www.children1st.org.uk/help-for-families/parentline-scotland/guidance-advice/understanding-self-harm/ 

    I also want to make it clear that the reason autistic people self harm is not always similar to the reasons self harm. This was a real barrier for me getting help  and currently I am in a position where the mh team won't see me until I get a diagnosis or not because I don't fit neurotypical treatment reasoning or models. Get the ball rolling on your kids assessment. Here are some websites on self harm in autistic people.

    https://www.autism.org.uk/advice-and-guidance/topics/mental-health/self-harm 

    https://www.autistica.org.uk/what-is-autism/anxiety-and-autism-hub/self-harm-and-autism 

    https://www.kooth.com/members.html/magazine/articles/1895ba17-bdaf-43ef-afb2-6b4f96680287 this is a kooth only one so might be for your child only. 

    Eating. The obvious website here is beat. https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/downloads-resources/ 

    I have never experienced anorexia myself, my issues with eating are most closely described by ARFID. However, if you are seriously concerned about your childs weight and it is severe enough that the school is noticing you have to go to the GP and they need to medically assess your daughter. Like physiologically, not just their mental health.

    I've watched a friend develop and then recover from an eating disorder. it is a horrific thing to watch as they continue to complain about every appointment and how they're not ill and everyone is making a big fuss enough about nothing. It took her well over a year after she was mostly better before she would admit that she had had a serious eating disorder. Generally, an anorexia sufferer will not recognise how sick they are until well into the recovery process. This is part of the illness. Beat has a lot of information and a helpline.

    I have to go now,  I hope this was helpful. Feel free to ask further questions, and I'll help as much as I can. I do have and know where to look for more resources if you need them, but your GP should be able to signpost to more local stuff.

    Good luck, you can do this

Children
  • Thank you so much for such a detailed, helpful and personal reply. It really helps to hear from someone who has first hand experience of some of the things that my child is going through, and reading your experience of hearing about non-binary and everything suddenly making sense helps me to understand how it might be for my child too.

    They are wearing a binder from Spectrum Outfitters, which is hopefully a decent one, and I've said I'll get them another one, though they always seem to be out of stock of the black ones that they want! I still worry about potential long-term damage to developing tissue as they wear their binder all day long, not just for the recommended max of six hours a day. Not sure there's much I can do about that. They're aware that it's not advised to do that. 

    I will work my way through all the links you provided, thank you. It's super helpful to have such a long list of organisations my child and I can turn to for support with all the various issues. I think the text service sounds like just the kind of thing they might feel able to engage with. I mostly want to try to sort out the eating disorder as a priority as that's the one that scares me the most. I know that once anorexia takes hold, it's an incredibly hard road to recovery. 

    I'm so grateful for all the time and thought you've put into this. You're a totally amazing, kind and wonderful person x

  • What a wonderful reply Fibonacci Squid - so informative and interesting. What you write about being non binary reminds me of some of the things my eldest said to me about non binary. That when they realised it was an option it just felt right for them. They feel more comfortable, more themselves, happier. And let’s face it we all want to feel like that don’t we? We all have the right to live our lives in the way that feels right for us - and our gender identity is a huge part of that,