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
  • 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 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.

Reply
  • 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.

Children
  • 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 Muscle Heart

  • 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.