Could this be PTSD?

I know from past experiences she does not want me to worry especially when she saw how upset I was last year with everything going on. She doesn't want to bring it all back up. None of us do. Thank you for this 

ParentingAutism said:

She will talk to only 2 staff who have been amazing to her.

Hi PA,

There are many positives in your daughters life and you are one of them.  You have provided a room where she can feel relaxed and safe and I am sure there are many others as you sound like a very caring and loving person.   It's perhaps not the relationship you envisioned/dreamed of with your daughter but you have selected the school who is supporting her in the way she needs.  I can understand how upsetting this could be because you'd like to bond with her in that way.  I really do feel for you.  Perhaps the relationship with your daughter will evolve into something where she can open up to you in the way that she can with the teachers at school in the future.  It may not and perhaps you'll need someone to talk with about these feelings?  Do you have someone you can talk with about everything? 

On a personal note, I phone samaritans to offload things that I couldn't say to my close circle because they would worry about losing me.  It's good in a way that your daughter is protecting you from her inner world.  She may find it difficult to unmask and what emotions to unmask incase they are worrying feelings.  I try not to lean on friends and family too much as I don't want to feel like a burden which's fine when I am feeling less negative but sometimes when it's relentless and ongoing it's really hard to navigate and exhausting to mask.  It's a double edged sword as people who love you try to fix it and that in turn can feel overwhelming as you don't feel accepted for how you are in that moment.  It's hard to know who to tell inside.  

It sounds like your daughter is a very lucky lady to be able to have some people who she can speak with and to have a chill out place to go with a mummy who obviously loves her very much.

I too have a daughter hence the reason I understand those feelings as she was diagnosed at 6 years old and is now 10.  Our relationship is not how I imagined it would be.  It's special, unique and fills me up in ways I didn't think about.  She's not cuddly which's difficult but she does snuggle occasionally.  There are many things we share and that's what I try to focus on when I'm feeling rejected because she doesn't want a hug.  We have humour and similar thinking patterns plus many other connections.  I think we are lucky to have each other. We'd be lost without each other.

I wish you all the luck in the world.  

Thank you for your response. Honestly, we don't have any support. School is good and we are working together to help her. She doesn't talk to me about what has happened and what's on her mind when it comes to the incidents. She will talk to only 2 staff who have been amazing to her. She prefers to talk to people who hasn't been part of it, like us, her family and friends. 

She always spends time in her room cuddled up in her weighted blanket and beanbag listening to music with some colour changing lights. It's very relaxing and cosy. 

The main incidents happened 2 years ago now but there were others around 4 years ago. We know from the past 2 years she struggled when it all happened but after things calmed down she seemed fine. She was upset a few months ago about it and told school about part of it. She is now upset a bit more and it seems to affect her more. She has only told school this. She's been struggling all this time and I didn't realise. I'll be honest, she is amazing at masking her feelings. She can seem like she is happy and excited but deep down, she is upset and worried. Its hard to know I missed it so I feel guilty. 

ParentingAutism said:

Could this be because she has developed PTSD

Hi PA,

I feel really sad that you and your family are facing such awful challenges.  It sounds like the school are very good at acting when your daughter needs family support but it also seems that there are a lot of triggers for your daughter with changes and life incidents.

I think whatever the reason for your daughters distress, the focus could be on building even more comforting things into her routine.  As a teenager and adult I have received various GP recommended supports which have shaped who I am and had good and bad aspects to them depending on various factors.  I think that the main and most helpful person throughout my life has been my mum.  I think the best people are those who know the triggers and comforts needed for their child.  My mum knows when I am having a hard time and I have come to understand my own coping techniques as time goes by.

It sounds like there are a lot of traumatic experiences running through your family as a whole.  Do you receive support?  What support has worked for your daughter? What does she find comforting? Does your daughter tend to let you support her or does she prefer your partner?  Does your daughter have a quiet room in the house where she goes or does she prefer to chill out with you all?

Different things work for me depending on how I feel:

1. Slightly stressed - music/doing mundane repetitive tasks/crafting/art/helping others.
2. Moderately stressed - getting out in nature/watching movies/samaritans.
3. Extremely stressed - samaritans/pacing/crying/ranting/deep breathing/rocking/humming/any stimming
4. Suicidal - samaritans/cosy heavy blankets/comforting foods/loads of reassurance/cuddles if I had a partner

I really hope you find everyones hints and tips useful and that you, your daughter and your family come through this patch of angst to find laughter and light once again.

Thank you!

I will pray for her, and I'm glad she is considering talking to someone!

Thank you so much. I love her to bits and I will do everything in my power to help her. Unfortunately she is refusing to see any professionals but I believe school are talking to her to see someone during school with a staff member she is comfortable with. She is saying no but last time they asked she said maybe which is a start. I have hope where this is going. 

It definitely sounds like PTSD. I have PTSD myself, and what you're describing are symptoms that I experience. I recommend that if she isn't already seeing a psychologist or something, she go see one to get a diagnosis and maybe start treatment therapy for it. I can tell you love your daughter very much 

oh ok, sounds like a nice outcome. thank you.

I've taken down the two paragraphs which I think led to the misunderstanding.  They weren't critical anyway.   Glad you said something and didn't just quietly take away some hurt.  

oh ok fine, i'm just being sensitive. all good!

update: please don't edit or remove your post because the info in it is v useful!

I am supporting what you've said and will take it down if you feel attacked, not my intention at all.  I will never, ever attack someone on here and I'm very sorry you felt like that.   If I disagree with people I generally ignore their post and let it go - not here for any kind of conflict, of any sort, ever.   

I can't tell if you are questioning my diagnosis/experience or simply being comprehensive in general advice on the topic, but it came across a bit like that (on two counts) so not really sure what's going on if you are having a go? No idea if intentional or not but I feel attacked.

To be clear, I went the GP route, then because of waiting list I was referred (paid for via my work's health insurance) to an appropriately qualified PTSD specialist - through initial screening with psychologists and psychiatrists at a private practice. I also advised PA to go to GP in first instance because that is the route in they are the gatekeeper.

I also did not tell PA their daughter has PTSD. I said it sounds like. That was based on my own experience and subsequent wide reading on the subject so I am an informed person on this specific topic.

I'd recommend a therapist as they'll be able to say for sure hopefully she'll get the help she needs with the right support it gets easier to manage but it's hard to over come completely 

Thank you so much. I really appreciate this. 

That sounds horrendous - you must be extremely worried.   

On the face it, like consciousbadger, I think it's worth pursuing, but the problem (for all of us) at the moment is that the UK Primary Care infrastructure is stretched almost to breaking point, so getting referred for a diagnosis may be really difficult.   

In the US, where a lot of people struggle to access proper medical care even in the best of times, there is more publicly available self-help stuff - like these, for example

 https://www.childwelfare.gov/pubpdfs/child-trauma.pdf

https://www.stanfordchildrens.org/en/topic/default?id=post-traumatic-stress-disorder-in-children-90-P02579.

https://www.cdc.gov/childrensmentalhealth/ptsd.html

All those are credible websites.

There's a tonne of internal links on the CDC site in particular, and they have a bucket-load of quite practical-looking information.

There are peer-refereed academic papers out there as well, if that's your thing.

I imagine that the recommended parenting strategies on some of these sites would do no harm even if your child was eventually diagnosed with something different to PTSD.

The most important thing your daughter has going for her is, of course, you.  Whatever she has to go through, loving parents will make it better than it would otherwise be.  

I wish you, your daughter, and your family all the best in dealing with a very difficult situation.  

Yeah but like Autism unforantly there's still quite a lot of lack understanding for it.  But hey it's just the times we live in I guess ignorance is bliss 

Thank you. We know something has been wrong. She had asked to go to the doctors, which she NEVER does because she hates it. That raised red flags when she asked. She said that the feeling of one incident which happened has been coming back a lot more, without a trigger, just happening then and there and can't last minutes to hours and she hates it. It is a painful sensation for her at times. 

School have noticed when it happens because her mood will change in seconds. She will feel the sensation or feeling in her body and she'll start laughing and giggling. Sometimes her body will start jercking and she might drop to the floor. Today it happened a few times, that is why school called.

She was chilling then she was laughing then she decided to fall off the side onto a beanbag luckily. She will become really loud, almost shouting. They describe it as like she is extremely excited even though they understand she isn't. 

ParentingAutism said:

She's had constant nightmares about it and it comes and goes during the day and feeling the same emotions and feeling as to when it happened. She constantly seems on edge.

This sounds like PTSD. I have had it, had it for six months following a shocking bereavement. I also have autism, but the PTSD was separate. I would advise trying to get some assessment, maybe GP as first call. Do you or partner have health insurance - sometimes covers counselling that can treat PTSD. Most common techniques are CBT (which I had) and EMDR (which my wife had - we both had PTSD from the same event). Just my view but I would not even mention autism when initially mentioning the PTSD in case someone uses this to undermine what sounds to me like PTSD and you then don't get the right referral. When selecting a counsellor - if it goes that far then sure mention autism too as may be relevant at that point or could get a specialist that knows about autism too. I am not a medical professional just going from personal experience. Disclaimer over. Good luck.

Thank you. I did hear before that PTSD can be common in autism. I agree that many people believe that it occurs because we were in the army or war or being abused but that's not the case. I feel like there should be more awareness of mental health because not many people understand it.