I need help and guidance!

Often there’s not much choice but to withdraw - because when things get really bad mental health concerns have to take precedence. We’ve been in this position too - in fact we’re in it now. Throughout my son’s education getting suitable help and support (particularly for his Selective Mutism) has been a constant battle that we’ve basically ‘lost’ time and time again. Most people don’t want to remove their children from education - but it gets to the point where being in education without your child’s needs being met is actually harmful to their health. 
parents sometimes have to take that big step because if they don’t the consequences could be severe. 
my son had a period of school refusal at one point - and I was surprised it didn’t happen earlier to be honest. The way things were for him at school I was amazed he kept going in for as long as he did - he showed incredible courage to keep going in when he couldn’t talk to anyone - along with all the other difficulties of being autistic in the school setting. 

We removed her from school because she was being relentlessly bullied and the school were not good at dealing with it. She was refusing to go, her mental health was in tatters and we were getting threats of court and fines due to her attendance. She was at the point of having suicidal thoughts, we did what we thought was best for her to protect her at the time. We went to the GP, got next to no help, we have accessed mental health help, it is her peer support worker that has sent in the referral for assessment. We accessed help for education, got referred to a particular college course to start this year, they have support in place there too. She does spend some time with her friends, she is also part of a drama group, and does voluntary work. I did say all that in in my previous post. 

I’m sorry, I don’t really understand how to reply to your comment. I can’t speak for her feelings as I’m not her and she doesn’t talk to me a lot about feelings.

It's good to hear that things are looking more positive and that she is now in the system for an ASD assessment.

A lot of what you describe sounds similar to how I was at her age. Not fitting in, disliking any physical contact, silence when something is wrong, needing to isolate in my room a lot.

Darlz said:

She has this big fear of failure which stops her from doing things. I find this one frustrating because it can be something as small as opening a tin with a tin opener. If she’s not sure how to do it she will make up silly excuses as to why she can’t in order to get someone else to do it. If she’s pushed to do something she will get really upset.

This particular bit from your original post suggests a PDA prolife, part of the autism spectrum. The official title is Pathological Demand Avoidance, although many autistic people don't like that title. More information is available at https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pda/parents-and-carers and it says the following:

The distinctive features of a demand avoidant profile include: 

• resists and avoids the ordinary demands of life

• uses social strategies as part of avoidance, for example, distracting, giving excuses

• appears sociable, but lacks some understanding

• experiences excessive mood swings and impulsivity

• appears comfortable in role play and pretence

• displays obsessive behaviour that is often focused on other people. 

I think removing a child from school due to anxiety isn't a great move. It doesn't help them in the long run. All that happens is you teach a child to remove themselves from anything that causes them anxiety and doesn't teach them any coping strategies. They become removed from the world before too long. You have a daughter who has little or no friends, shows signs of mental health problems, is home educated so spends all her waking time with family. She is awash with hormones and seems she has little privacy to her own thoughts and emotions. A child who retreats to a bathroom - a room with the only lock - feels they are being bombarded by people and questions. She may not want to talk about things at that given moment and because it suits you. It sounds like she needs a trip to a G.P. to source some help for her mental health, support to go to college and some social life away from the house. She needs to breathe.

If she was diagnosed on the spectrum the same routes would be taken. Autism isn't an excuse not to do life.

You do not talk about your daughter's rights or feelings.  You only talk about your own feeling - that your daughter is 'not normal'.

That sounds really positive - I’m glad things are improving and that your daughter is on board with the assessment etc. My family are also a little similar to yours in this respect! It’s not easy is it? But we get through it all together - in time! Good luck x 

Thank you! She’s been referred now for an assessment, although obviously it will be a long wait for it we have been encouraged to access support and go forward as if she has a diagnosis for now.

We have discussed autism, and we have realised over the years that she has some uniqueness that we have worked around and found solutions for! She’s happy to be assessed, I think a positive diagnosis will help explain certain things. To be honest, our whole family is a mixture of differences and mental health, a bit chaotic! I think that’s why it’s taken so long to get moving with the assessment, we are used to adapting and accepting!

That sounds amazing - huge progress! Good for her! 

It is difficult to support our children when we are struggling ourselves - I very much relate to that situation! My son is also such a wonderful, kind, caring gentle soul - and he struggles so much with everyday life. It’s hard to watch our children struggle so much isn’t it? At least you are there for her though, and together you can work on improving life for her. What matters is our children’s happiness and well being - they might struggle with the simplest everyday things but the key thing to focus on is finding ways to help them live a fulfilling life where they can be happy and feel safe. 

If your daughter is willing I would suggest you both ask your GP to refer her for an ASD diagnosis. Many of the things you describe here sound very autistic to me - they seem very familiar to me. Both my children are autistic and I am also autistic btw. 
Your daughter sounds like she is having an incredibly difficult time. Don’t blame yourself and don’t blame her either. Let her know that your 100% on her side and that you’re going to do everything you can to support her. She’s obviously very unhappy and anxious and needs a lot of love, understanding, kindness and support. Have you talked to her about autism? How does she feel about it? 

A bit of an update. Having got nowhere much with the GP (so hard to see anyone!) we accessed the iRock mental health service, my daughter has had some peer support sessions and at her last one the support worker came out to say he’s referred her to CAMHS for ASD screening due to noticing her traits. So the ball is rolling! The point of access guy sent me some links to support to access. I feel a bit mixed, glad somebody has helped, and at the same time worried about what it means.

 In the meantime she’s enrolled in college again for September, which is incidentally a course for supporting kids with special needs so I’m hoping this will go better than last year! She’s continuing her drama group and put on performances, has started coming to play softball with me (which was my adult time) and is volunteer working at a community library which she enjoys. So I feel like things are looking positive right now :) 

Darlz said:

without anything obvious to go on I am dithering

Dither no more. None of us can diagnose and we wouldn't try, but there's enough screaming here to say that lass needs a proper assessment.

And, no. No part of this is your fault. You've done your best in the circumstances, and it has taken it's toll on you. But she can't go into adulthood so afraid like that, and she will unless she gets a proper assessment and the right assessment and right support while she is technically still a child.

Be tiger mum and get that for her now, but at the same time be kind to yourself. You are just doing your best 

The Lorna wing centre is very expensive. Other private psychologists prices vary, but are lower. As I always say, choose someone who specialises in ASD or has a special interest in it. The best recommendations are from families like your own, so do some research within your community, and ask a lot of questions (for both NHS and private experiences).

We do realise you were only talking about the negatives!

Good luck with the GP visit.

Thank you so much for the replies. I think I just need to feel like I’m not making something out of nothing, looking for things that aren’t there. Just writing down the things I could think of in my post helped me to realise there are things there that are negatively affecting life and neither of us know how to move forwards (with things like education or future work) so we’re stuck in a rut. I need to get help as I don’t have the ability to deal with everything without crashing down myself, I will go back to the GP. I would love to be able to pay privately for an assessment, I was reading about the Lorna Wing Centre which sounds so good. I just don’t have two grand! First step, GP. I’ve got to get my head around sorting out her functional skills exams too. 

Edit to add, as I’ve written about the negatives I wanted to say that she is a lovely caring girl who has actually mostly been my easiest going child, very generous and sweet and not a nasty bone in her body. She stands up for people and loves animals. Just adding some balance!

From what I’ve read, you have plenty to go on!

Write down a list of ways that your daughter struggles, and go back to the GP and ask for an assessment.

She’s school age, so the first thing they do is dismiss it, and send you to the school nurse. We’ve been there. You will need to go on and on and on until you get that referral.

Get a letter from the SEND department at the school outlining any issues they may have seen.

If you are able, you could actually fund an assessment yourself privately. This would be a much quicker route.

As for you, I suggest you start informing yourself about ASD, and how it may present in girls. Watch some YouTube videos as well, so you get a bit more insight into how life is for someone on the spectrum.

I know how you feel, because I’ve been there. You think the behaviour is often intentional or that she’s being difficult on purpose. You’ve done your best to bring her up, and that’s all that you should be concerned about. You’ve done nothing wrong. She isn’t misbehaving. The both of you (and the rest of the family) have a lot to learn, and that’s ok. You will get your head around it, and things will become clearer and easier to deal with. Eventually. 

Gosh, there's so much here!

I can tell you the modern change in lighting can give me low level anxiety to severe anger. It's unjust, this enforcement of LEDs. However, it's actually not illegal, if you have a light sensitivity to get halogens. Have your daughter join https://lightaware.org and email them to get a card. I have rock lamps and halogen lamps and you can even get tinted lenses to deal with them, which can be helpful. 

The world has become oppressive in the assault on human senses. The same lighting and sound levels I find on public transport or in cafes, shops, etc., are used to torture prisoners. One thing that can make a highly sensitive person or autistic individual unique is the inability to Dull the Senses - in some more recent medical papers, it's suggested this has to do with the Oscillations in brainwaves being different. But it can also have something to do with our brains being over-active, meaning - it can take us far longer to learn disciplines due to the sheer amount of overwhelming 'stuff' happening in our brain, and/or 'stuff' we're intaking from around us. This ties in with the ability to mature at the same rate as our neurotypical peers. Here's what I've read and it Begins with: The problem with language. 

Psychoanalysis (since the late 1800s) has realised that autistic individuals have had difficulty with language (we have modern neuroscience to back this up now). Most Typical humans tend to use the parts of their brain which deal with language and meaning much more than autistic-wired individuals, who might be using imagination and picture-thinking far more for reasoning (as an example). It's also been shown that autistic brains can make far more symmetrical hyper-connexions in their brain than their peers and tend to catch a lot of detail, but here again, not highly focused with language/meaning. https://www.huffpost.com/entry/autism-brain-symmetry_n_5841d0b1e4b0c68e0480b469/amp Sometimes I think of the autistic brain like an escape room. If a Neurotypical brain has one puzzle to solve to open a door, the autistic brain will have several and then a few surprises to work out, decode, step around, roll out of the way. 

Language is used to "encode", command, it is a building block for society and used to instruct neurotypical western culture to suppress desire and transfer that desire into civilised behaviours. This transfer of desire is a prerequisite to Maturity and happens when the brain is using the language/meaning reasoning compartment in the "typical" way. This is like writing code into a computer. This also requires Dulling ones Senses, and for some reason it does seem that the Typical brain is wired to handle desensitisation. The Autistic brain is not. We need external objects to protect us: tinted glasses, ear plugs, Human friendly sensory aesthetics. This can mean cleaning products with out added chemically made scents and clothing not made from petroleum (polys, nylons, etc. - stuff which would turn to plastic and melt to your skin in a fire). The skin cannot breathe in these either. 

If your daughter isn't talking about a situation, she may not have the language to express. I was incredibly silent until my mid 20's. I watched Dancer in the Dark and it frightened me. I decided to not stay silent. But it would be another 10 years before I felt like I was actually starting to get a handle on my words matching what I was trying to convey. I currently love dictionaries. I love opinion column writers (journalists with a bit of ethics who really know how to squeeze the pragmatics from words because their job depends on good communication). The next thing to note is the inability to identify emotion. The first time I realised I couldn't do this was in a therapists office at 28. This woman is quite informative: https://www.instagram.com/thearticulateautistic/

Sometimes the biggest block for us which first needs removing is the for another to assume they don't know us and simply want to. My mother fed me to the wolves at 17 (expected I would move out and 'make it' on my own) and we don't have a relationship. I was FAR TOO young to work out the world and was abused and experienced things I shouldn't. Thankfully, I also had a desire for wisdom and education but where I may have a hyper active intellect, not everyone will. 

I would say the first thing to do is never force a process. Just be available. I've always said to my son, How can I help? and now he says it to me.

To be fair, I just threw out my tin opener as it wasn't opening tins properly, bad tools are pointless and dangerous. 

I needed to learn to do one thing at a time, to completion... or everything left undone, not put in its place, all loose ends start screaming at me and suddenly I'm overwhelmed and frozen.

I needed to be allowed space to breathe and process in order to feel open to learning. Yoga was helpful - anything kinetic in which we connect to the self. Allow her room to decompress and to maybe find one thing she can be responsible for - a task she can always complete.

Help her learn to identify emotions - this can be crucial for her to have a feeling of power when she feels powerless and wordless. Hope some of these help!