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

Thanks so much for your reply Ann. It's very reassuring to hear from someone who has been through a similar experience to my child and come through the other side. It's lovely to hear that even if your mum didn't know it at the time, you found her support and care to be helpful. That gives me encouragement that I'm doing the right thing.

I'll try to find out whether my child finds the sensory experience of eating a challenge in any way. I will also try to encourage them to do some more reading about people's experience of autism and how it might explain their struggles. 

I really appreciate your help and advice and it's also hugely helpful to read about different people's experiences, thank you. It's lovely that you're now in a better place and have managed to build back a close relationship with your mum again :)

Hi, that does sound like a difficult situation- not sure I can help but here are a few thoughts. I think like other people have pointed out, keeping the lines of communication open is very good so that hopefully they feel that they can come to you for support when they are ready. Realising that they are autistic could be a very big step- it can be quite confusing/unsettling to realise that you are autistic but it can also help with self-acceptance, better understanding yourself and managing some of your struggles. If they are comfortable with it, it might be helpful to get a diagnosis. I am not sure if there is more specialised support available for autistic teens (for adults unfortunately there is very little), but a diagnosis might at least give you some answers and also can be used to get some adjustments at school if necessary. I was actually only diagnosed now at age 25 after years of mental health issues, including low mood, anxiety and issues with eating. When it was first mentioned to me that I could be autistic, I did not know anything about the female phenotype and thought 'I don't need yet another diagnosis/label to add to my long list of diagnoses which don't seem to fit'- however when I started reading/learning about autism in women it made so much sense and I am very glad that I have been diagnosed and am now aware. Do you think it could help them to find out more about being autistic/ autism such as by connecting to other autistic individuals or reading the experiences of autistic people? 

In terms of them withdrawing to their room after school, that on its own is not necessarily concerning and might actually be an act of self-care. As an autistic person, it can be very important to have time alone to retreat and recuperate especially after having to mask and be around people all day at school. 

In terms of eating/food: it's concerning that they are not eating enough- it could be anorexia nervosa but it does not have to be- issues around eating/food are extremely common in autistic individuals and it is not always anorexia nervosa. I have personally struggled with digestion, eating/food for a long time now, though I definitely do not have anorexia and my eating issues are more linked to being autistic (ARFID type issues, need for routine, anxiety, sensory sensitivities) and I was in fact misdiagnosed with anorexia nervosa which was very damaging. I am not saying that it is not anorexia- the fact that they do not want to be weighed could be a red flag, though not necessarily.  When we are stressed/anxious eating is often one of the first things that goes (either undereating or overeating or eating same thing over and over) and not eating might not be linked to a desire to loose weight. The difficult thing with issues around food, especially anorexia nervosa, is that sufferers are often in denial so it can be very difficult to talk about (I've sadly met and known a lot of people suffering from eating disorders including anorexia nervosa)- I presume you have tried talking to them about it. Here are some other reasons that could impact eating: At school, could it be that the cafeteria is too loud/the environment overstimulating or the food offered there is not to their liking or that they feel anxious about some of the social dynamics that take place at lunch time? Are they not eating well at home as well as at school? Could it be digestive issues (which can be exacerbated by anxiety/stress)? Or due to stress/anxiety which can cause lack of appetite? Sensory sensitivities to certain foods? Could you maybe say to them that you are concerned that they might not be eating enough and whether there is anything that could be done to make eating easier? It's a difficult call as with eating disorders it's important to get help but if the person is not willing to engage, that also is not helpful and sadly in my experience the eating disorder services have very little experience with autistic individuals and therapies are often not taylored at all to their needs, which is shocking given that one in 5 women with anorexia for example is autistic. It might be that the food issue is a sign of stress/anxiety and struggling in general- it sounds like they have a lot to deal with at the moment- hopefully once they feel less overwhelmed the eating will pick up again. 

It must be very hard to watch as a parent- I know my mum has had a very difficult time watching me struggle for years (and especially watching your child loose weight etc can be so scary as a parent) and she felt powerless to help and I think often felt like she couldn't really help or make any difference. But even though she couldn't tell at the time, knowing that she was there and supportive and concerned/worried about me was a great help- Just knowing that there is someone around that cares is already a great help. We did get into arguments too about my struggles at times (especially eating issue etc). which was sad- I think my mum was just so desperate to help but sometimes I felt 'under scrutiny/attack' or I got frustrated that she couldn't fix everything like she did in the past when I was younger (which I know was very unfair). Now we have grown very close again. The reason I am telling you this is because I want you to know that even if you feel like you do not know how to help, you are already being a great source of help to your child, just by being there for them, being supportive and caring. 

I really hope you find a way forward. Realising that they are autistic could be a huge step. With time it can just get very exhausting/overwhelming and just too much to cope with to try and survive as an autistic person in a world built for neurotypicals especially if you do not understand why you are so different and struggling- I think that is something that confused me- why did I seem to cope for so long and then just couldn't any more? I think it's quite common that autistic people mask and cope and go on until at some point they just can't because the years of masking/ struggles just build up. It's helpful to understand this as it is easy to them go and self-blame and think 'but I used to be able to put up with this and do all these things/ get on with life- why can I not do it now? Why can't I just pull myself together and be fine and why are things that appear so easy for others so difficult? Self-blame can be so destructive and hard to get rid of. I really hope you manage to access some more support. It all takes time. Having a loving, understanding and supportive parent already is one step closer to success.

So sorry to hear you’re going through such troubles with your 16-year-old. The severe anorexia combined with selective mutism sounds incredibly hard to treat, and unbelievably worrying for you. I wonder if there are any specialists who have experience in treating anorexia in people with autism, as I would think she would benefit from someone who understands both conditions in order to find a way to break through to her.

Others here might have been through similar things and might be able to give you some pointers - maybe it’s worth opening a new thread (if you haven’t already) and asking. There seem to be lots of really lovely helpful people here who are willing to share their experiences and advice.

I really feel for you hope you manage to find a treatment that works. Sending you strength through the airways  ️

My youngest has Selective Mutism - so solidarity with you there. Being autistic so often comes with other issues (such as Selective Mutism, eating disorders, OCD etc) - and it creates a complex situation where getting the right support is incredibly difficult. I really wish there was a separate branch of Mental Health services specially designed to support autistic people with their complex needs. My youngest has many interconnected issues and I feel he needs a holistic approach. Sadly that kind of support just isn’t available on the nhs in most cases. 

I have stumbled across your post while looking for help for my own 16 year old daughter, who shares some of the difficulties you describe in your child.. My daughter does not experuence the gender dysphoria you describe  but she had very similar developmental, social and sensory problems, and has a diagnosis of severe anorexia which has been resistant to treatment partly because her social anxiety and selective mutism makes it difficult for her to engage with help. I feel undiagnosed autism is contributing to her difficulties.

Im so sorry you are going through this and I really hope you find some useful pointers. I'm sorry I can offer any support ideas myself but I understand the worry and sadness that your childs struggles must be causing you. I would say seeking specialist eating disorder support should be an urgent priority though, as my daughter became very ill, very quickly. You can usually self-refer to local NHS services.  Hoping other replies yo this might be helpful for me too.

I have stumbled across your post while looking for help for my own 16 year old daughter, who shares some of the difficulties you describe in your child.. My daughter does not experuence the gender dysphoria you describe  but she had very similar developmental, social and sensory problems, and has a diagnosis of severe anorexia which has been resistant to treatment partly because her social anxiety and selective mutism makes it difficult for her to engage with help. I feel undiagnosed autism is contributing to her difficulties.

Im so sorry you are going through this and I really hope you find some useful pointers. I'm sorry I can offer any support ideas myself but I understand the worry and sadness that your childs struggles must be causing you. I would say seeking specislit eating disorder support should be an urgent priority though, as my daughter became very ill, very quickly. You can usually self-refer to local NHS services.  Hoping other replies yo this might be helpful for me too.

I wasn't aware that binding more led to potentially more complications if they ever want surgery. I will make sure my child is aware of that, thank you and will try again to gently suggest they have some days off. I can imagine it must be hard to do if they feel uncomfortable with the way they look without a binder.

Thanks so much for your response Kate Kestrel. How wonderful to have received help from both a young person as well as from a parent who has been through similar experiences – I couldn't have asked for more. It's great that your young person felt so much happier being non-binary. I can't say the same is definitely true for my child though – there were maybe a couple of weeks after they 'came out' that they seemed generally happier but although they say they are relieved to be known as non-binary, they now seem generally less happy on the whole (grumpier and less enthusiastic about everyday life). Maybe that's underlying depression though and they would be unbearably unhappy if they were still identifying as female.

Your advice about not ‘pushing’ them to get help sounds sensible, thank you. They are generally very resistant to any form of pressure and will dig their heels in over most things so I think there's probably little point in trying to force anything. It is so hard to do though because every inch of me wants to do something actively positive that put them on the road to recovery, but that doesn't really seem to be an option right now. I will try to just keep talking to them, signpost them to some of the places that Fibonacci Squid recommended and try to remain open and supportive so that I can be there for them whenever they feel ready to access some help.

Thanks so much again for your reply – it really helps to not feel alone in all of this.

Spectrum Outfitters is great! They're who I use, but yeah they are out of stock a lot because they are so popular. There may be a bit of a wait.

Binding is never going to be 100% safe. Our bodies just aren't designed that way. 8 hours is the maximum that I've been told but it's probably less for still developing bodies. The way I manage this myself is that I do longer days, but fewer days in a row. This isn't perfect, but it means when my brain is on a bad day I can wear it all day and if it's a slightly better day or I'm not going out I'll have a day completely free. This isn't great, but it's better than all day every day and even if you are doing only 6 hours a day you're still supposed to have a day off once a week ish. But that is always easier said than done. Maybe an idea to bring up with your child about this which they may or may not know already, is that the more you bind and the less you care for your chest tissue, the less effective/safe/clean/easy top surgery is. It's very far in the future for me and probably them too but if they're binding they've probably thought about it and sometimes when I just don't want to recognise my chest additions it's the only motivator that keeps me binding safely. If they're not aware of this, they should be made so.

I'm glad you found the links helpful, I've had plenty of time to collect them over the years. Do let me know if you need more 

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, 

That’s a lot that the two of you are dealing with - I’m sorry. So stressful. You’re obviously a loving mother who wants to do everything she possibly can to help her child - and (as I know from experience) it’s incredibly painful to see your child struggling and to not know how to help. If they don’t want to engage with getting help it’s so difficult to now what to do. One of my children is non-binary - so I have some experience that relates to yours. Both of my children (now adults) are autistic, and I’m also autistic. 
The main thing is that you do all you can to keep the lines if communication open, and that your child (I’m only using the word child for want of a better word but of course they are an adult now at 16) knows that you are 100% there for them. They need to know that you ‘see them’, respect them, respect their choices and their ability to make their own decisions - even if inside you’re not sure that their decisions and choices are doing them good. We need to be compassionate and drop the judgement. It sounds though that you are already doing this. 
There are no easy answers, no quick solutions. But as long as you keep that relationship positive, and keep the lines of communication open (as much as they are willing to anyway) then you in the best position to help them. As young adults there is no point in ‘pushing’ them to get help - I think pushing always results in resistance. 
In terms of being non-binary - I had concerns too about some aspects of this and whether there were a lot of complex causes leading to the feelings of dysphoria that might be unresolved and not ‘answered’ by being non-binary. When you don’t feel that way yourself it’s a difficult thing to understand. For my eldest though they have made it clear that they are much happier being non binary than they were before - so for that reason alone I am supportive of them in their choice. I won’t lie - I have found it difficult at times. But I love them and if being non binary makes them happy then that’s the most important thing. Once our children become adults it’s their journey and not ours - and we have to learn to accept and step back. We can be there for them, and love them - but our role definitely changes. But if we keep the communication open, let them know there’s only support and love and not judgement and criticism - then hopefully they will still be able to connect with us and turn to us when they’re ready, and be able to accept the help we are so eager to give them when they need it. 
It’s so hard to see our children struggling and suffering - we love them and we desperately want to ‘fix it’ for them. I really feel for you and your child  - and it’s obvious that you’re doing everything you can. Being a young autistic adult is often very difficult. You’re both doing your best - that clear. It’s great that she has friends - that’s a huge positive. 
I’m sure you’ll both find your way through this in time. Let them know you there for them day or night - and hopefully they’ll turn to you for support when they feel ready. They’re obviously very intelligent so it’s likely they’re very aware of what their issues and difficulties are - and they’ll be working their own way through this - and will seek help when they feel able to take that step. But they have to be on board with this - and there’s not much you can do until they reach that point. Try to be patient - and give them space. 

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