Ideas for structuring/helping through the days.

Hi, 

My 16 year old struggles when out of the routine of education I.e. the weekends. We are really struggling because before this year she enjoyed many things; theatre (watching), tv documentaries, the cinema, walks, taylor swift, harry styles, craft things like pottery painting, crochet, making things such as bracelets etc and would be happy to mooch around shops or museums and loved to try new things often at her own request.

She was admitted to hospital in April for refeeding after what I strongly feel was experiencing autistic burnout out after 2 years of ED with little understanding from professionals or school and longer in terms of hormone changes/covid/struggling socially etc and gcse exam build up.

She is incredibly bright and picks skills up with ease. My feeling is that when she is at college it is taking a huge amount of energy to engage, focus and do all she needs to do academically (I suspect she has some adhd traits that she masks along with her diagnosis of autism which she rejects) and even more so socially and therefore when she is at home she is exhausted and does not want to do anything as needs to rest and recalibrate. She is in a routine of listening to podcasts and not sitting down until after 8.30pm. It is unclear if this is ED related or routine orientated.

The problem is that she is starting to feel a bit stuck/lost and this is causing her increased upset. She volunteers that she does not like feeling 'trapped' by bad weather and being inside but equally she has refused to go outside or in the car or to engage with any activities since this time last year unless it is once a day or for college/apts. Any form of activity, even watching TV is not engaged with- it feels to me as though it isnt "allowed" like a self punishment but she states that is not the case. From the limited info she can share with me, she states she does not know why this is the case and my absolute guess is that when she became burned out and unwell last year it became a routine that she has forgotten the reason for but does not feel it safe to break. I dont know how to help her and she won't talk to camhs (and I understand why, she lacks trust in most people). She only has her dad and I as adults who are around and I feel this isnt helpful for her either sometimes as she has no other influence or support.

I wondered if anyone had any ideas on gently helping her to move forward in a way she wants to. She may only be able to cope with college at present and that is fine and I continue to stay with her, where she is and what she needs but when she expresses she wants to go out or do something but also does not want to, it is hard to find the right approach. It can also be distressing for her brother should we need to go out as a family (extremely rare nowadays) and she is so distressed  at being in the car for example. I should stress that these struggles were never present before last year at this time, she never showed signs of sensory discomfort or being routine orientated but did show a need for clarity and planning. 

Any insight or advice would be really welcome!

Parents
  • I struggle with doing things even if it's things I want to do during burnout. I struggle with demands, expectations and pressure. That's from myself or from others. Eg. A suggestion of watching tv could be perceived as a demand so I wouldn't do it. It's an automatic response, fuelled by autistic anxiety. Feeling trapped is something I massively struggle with. I need to be in control of myself and my environment, if not then the anxiety increases and I am unable to function. For me what helps is 'planting the seed' rather than a direct suggestion. I've no idea how to do that with a 16 year old sorry, I'm an autistic adult, also with an ED (which gets worse during burnout). 

Reply
  • I struggle with doing things even if it's things I want to do during burnout. I struggle with demands, expectations and pressure. That's from myself or from others. Eg. A suggestion of watching tv could be perceived as a demand so I wouldn't do it. It's an automatic response, fuelled by autistic anxiety. Feeling trapped is something I massively struggle with. I need to be in control of myself and my environment, if not then the anxiety increases and I am unable to function. For me what helps is 'planting the seed' rather than a direct suggestion. I've no idea how to do that with a 16 year old sorry, I'm an autistic adult, also with an ED (which gets worse during burnout). 

Children