How to help my daughter?

Hi I could be writing this about my daughter it’s  very similar story to mine. My 14 year old  was diagnosed in the summer and is under CAMHS care but her anxiety remains crippling we are now waiting on psychiatrist assessment for medication. Her meltdowns at home are horrendous. She masks all day at school so they don’t see the problems.  I don’t have any real suggestions as it’s all new to me too but know that you are not alone and you know your child best. Take care. 

No problem - you're obviously a really supportive mum and care about her very much, so that's the most important thing. I don't know where my weighted blanket came from (it was a gift), but I know it contains fibreglass - apparently that helps to make sure it doesn't get too hot if you're using it in summer.

I hope you are feeling better. I am happy to help in anyway that I can, but I am no expert and what I write is simply my perspective and understanding of how autism affects me and things I personally have found helpful. If there is just one thing that I write that helps you and your daughter that would make me happy. 

I can also identify with your experience of being ill and your daughter not expressing empathy for your situation. When I read your reply, it could easily have been written by my own mum.

There are perhaps a couple of other things to consider that link with this experience too. My autism means that I have single focus of attention. This applies to absolutely everything. I can not concentrate on more than one thing at once and my concentration is absolute. This has its advantages but also can be tricky mostly when reciprocal interaction is required. I will either be thinking or feeling... I can't do both at the same time. My attention will either be on me or the other person. When I am concentrating on the other person I loose the concept of my self and can be unaware of my reactions to them and what my face and body are doing (I can now do this but it takes a lot of concentration). This makes the expression of empathy really difficult as I will generally be thinking in a conversation/interaction not feeling and struggling to express my feeling towards their situation. I have lots of empathy and after an interaction with someone who is struggling and I have processed it and started to feel the response I can sometimes be overwhelmed with empathy and struggle with the fact I haven't shown the other person I care. Text messaging has helped me hugely in this respect as I will often now send a text to a friend after the interaction to show them that I have listened and that I care deeply about their experience. 

When in my teenage years my anxiety level was so high that I was almost continuously in sympathetic nervous system mode (flight or fight) and in this mode I could only think of myself as I was busy trying to simply survive this random and chaotic world. My nervous system also perceived any slight change as a threat and triggered my defenses (quickly reacting to anything that was different or percieved as a demand, may be another reason your daughter quickly reaches 'boiling point' ). My auditory sensitivity increased and someone coughing would make me feel angry. When I write this now I feel really guilty for the things that I did and said to my mum and wish I could take it all back.

I think you might find this book by Holly Bridges... Reframe your thinking around autism: how polyvagal theory and brain plasticity help us make sense of Autism.

It is difficult to know what will help and what will trigger without knowing your daughter and professional advice should always be sort but below are some ideas...

I find it much easier to write about my experiences than talk about them. Framing it as writing about experience is much easier for me than if someone asked me to write how I felt about something. I wonder if this is something your daughter could do. It takes away the demand of two way interaction and allows me to concentrate on what I have been asked without having to navigate the other person's responses. (might also help with accessing services through CAMHS) 

When your daughter is in a more relaxed and open state perhaps it would be good if she can identify and write down the things that make her calm and the things that stress her and then work out some strategies together without judgement. You could use a sensory preferences checklist to start to explore this that considers what sounds are calming alerting, what smells are calming/alerting, what activities are calming/alerting and having a balance for these in her day.

You may also find the discussion on this forum titled 'confused about the nature and experience of love' posted 3 months ago helpful there are lots of wonderful contributions from the community that share their mixed and varied experience of what is such an important topic that impacts on absolutely every aspect of being human.

Hope anything I have written helps...

Thankyou for your rely, it’s so helpful to hear this from another perspective.  It makes complete sense that she doesn’t recognise her emotions, for example I’ve been ill this week, she hasn’t asked how I aM or shown any concern.  This makes sense because I don’t think she knows how to feel empathy or sympathy, it upset me at first but I’ve learnt a lot this week.  She does get to boiling point very quickly which would tie in with not feeling her emotions untiil they’re too big.  She loves to draw so any help you can give me for her would be great as there is no talking to her to calm her down, I just have to leave her alone which to me fees horrendous.  Thankyou 

Hi.... I am in my late 30's and have been recently identified/diagnosed as having autism. From the age of 15 to my mid 20's I struggled with an eating disorder that impacted significantly on my mental and physical health and also the relationships with my family especially my mother, who like you really wanted to help me but I couldn't let her in. At the time I went into complete shutdown and blocked anyone that wanted to help. On reflection it must have been really frightening for my parents.

My autism means that I struggle to identify, and subsequently express emotion, I don't feel an emotion until it becomes so big that it overwhelms me and I go into complete shutdown, and sometimes meltdown. I found the interaction with others so difficult that co-regulation has been almost impossible although I am getting better at this and am so grateful for the people in my life that haven't given up when I have pushed back against them.

Like duckbread mentioned the most useful thing I have ever done is to work out how I process sensory information. The input that calms me as well as alerts me. This way I have been able to calm my nervous system and once I am calm I am then able to reach out and connect with others. There is lots of useful information on the Internet and NAS site. I would say it is important to understand all 8 of the sensory systems. For me understanding the way I process tactile, proprioception and interoception (the ability to perceive bodily sensations such as hunger and thirst but also feelings linked to emotions) has been the key to not only self-regulation but also enabling co-regulation to be effective.

Yoga, running, climbing and drawing are my main calming strategies and I need these everyday. 

If you are interested in these concepts then please post a reply and I will give more detail of my experience and my own understanding. Occupational Therapists trained in sensory integration can also help.

I do really feel for you and your daughter. The one thing that bothers me about not getting a diagnosis earlier is that I think that it would have helped the relationship that I had with my mother and given us a better chance of connecting and reciprocating the love that we had for each other.... It was always there even through the really tricky times it was just hard to feel it when my nervous system was in such high alert. 

I’m sorry to hear that you and your daughter are going through this too.  It’s heart breaking to see them struggle isn’t it.  I wish we had a magic wand that could make them see their worth, how loved they are and how important they are in this world.  I hope you find help somewhere, there has to be a happy ending x 

Thankyou so much for sharing your experiences.  It’s a great insight to how it can feel  for my daughter, I am starting to recognise her triggers, yesterday I knew there was something a bit off but missed it, next time I will know.  She apologised to me after so she obviously feels awful and that’s sad too that when your all going through this you have the added worry of how you’ve reacted.  I’ve been thinking about getting a weighted blanket for her, I will do some research on this site and get some recommendations, Thankyou again that’s been so helpful! 

Hi , I am a parent of 16 year old daughter who was diagnosed with Asperger's this summer. She did very well at school until this summer. In September her anxieties and emotional well-being started to get worst and at start of October she stopped going to school. She fell into a deep depression.

She was taken under CAMHS but there was no therapy offered only medication.

We went the private route with therapy and she started the medication but her condition worsened further and she started to get heavy meltdowns and now became suicidal.  She tried her best to engage in the therapy and CAMHS decided two weeks ago she should start to get back to school which she tried. Going back to school and the realization that school resembles future plans worsened her condition even further.

She doesn’t see a future, she doesn’t feel she can fit in, so these social and academic pressures are aggravating the situation,The only solution she sees fit is to give up.

She is now being referred by CAMHS to be taken into inpatient unit which we would like to avoid but there doesn't seem any other support out there and the risk has become to high. 

She is longing find peer support , someone she can relate to that has gone through similar situation but we have not found any such service for young adolescents.

Sorry i cant provide you any other tips as we too are going through desperate situation..

Hi. I'm not a parent, but I am on the waiting list for an autism diagnosis. I also mask and have meltdowns, usually when I'm at home rather than out in public. One very hard lesson I've learnt is that nothing anyone says or does will help me whilst I'm in the middle of a meltdown. As a teenager, I used to shout at my Mum and pull away from any effort to hug/comfort me, and I felt absolutely horrible about it afterwards, even though I wasn't doing it on purpose. I felt so angry that I sometimes worried it wasn't safe for people to be near me, even though I've never hurt anyone and never would. Now that I'm older, my meltdowns usually involve uncontrollable shaking/crying. I'm better at recognising when they're coming on too, so I take myself into a room on my own so that I don't end up shouting at anyone. It's rare that I take it out on objects like I used to (I used to kick things and throw things - never directed at anyone though). 

My partner, my and I have learnt that once I'm in a meltdown, I just need some time and space to work through it. He's able to help me before a meltdown, e.g. by recognising the signs that I'm stressed/anxious, pointing it out to me, and suggesting something I could do to relax (e.g. reading under my weighted blanket). After a meltdown, I usually come to him when I'm ready to either talk about how I'm feeling, or just sit quietly and recover. At that point, just knowing he's there for me is nice.

If you can also identify triggers for meltdowns, you can try taking some preventative action. For example, sensory issues can be a trigger for me, so I try to recognise when the sensory environment is getting too much and make a change if I can (e.g. if it's too noisy in the office or on the train, I'll put my noise-cancelling headphones on).

Everyone's meltdowns are different, so these tips won't necessarily help everyone - I'm just sharing in case any of this is useful for you.