Catch 22s

NAS75769 said:

These days she's very independent - fighting for more of it in fact (we're going for the drip feed approach as she's only just started secondary school, which so far is going very well)

Dangerous to hold them back too long though. When I was 17 I didn't know how to catch the bus home. You know why? Because when I was 12/13/14 and wanted to go places on my own my parents said no. By the time I was 17 I had no where to go. My social life such as it was was falling apart, I had no friends to visit etc. Teenagers need to learn independence early on to construct a platform for relationships outside of the family. If your child only spends time socially with a few kids all well known to your family it probably means she's only been able to look for friends with in a very small pool of kids which may be hampering her social life and development of her social skills. If she doesn't gain the independence to organise and run her own social life with out your help in the next few years she may struggle to develop that later on.

NAS75769 said:

She has a younger sister aged 8 and can be exceptionally jealous at times, despite us repeatedly reassuring her that we are being fair. 

Maybe but I bet her sister gets more opportunities outside of the family? Invites to birthday parties, sleep overs? Autistic siblings are often aware that non autistic siblings are having an easier time of life. Expect that jealousy to get worse not better. And remember equality is not treating people the same it's making sure they get the same chances in life.

NAS75769 said:

She will mention something that is making her anxious, like a friend taking her time getting from one lesson to the next, and as soon as I show sympathy and try and counsel her, it quickly descends into a huge rumination exercise.  I advise, she rejects my advice, and then we go round in repeated circles until it drives me completely crazy, and I lose my temper.

Sounds like you didn't get it. That's not surprising autistic people can be horribly bad at explaining our personal problems. That's probably the rumination exercise you noticed. Her restating the issue over and over in different ways hoping one will convey her feelings and thinking better. She will take any suggestion that doesn't seem to take all the factors she cares about into account as an indication that you haven't really understood her issue. You know why she doesn't do this to her dad? She probably doesn't have any faith (or very little faith) that he could understand. She confides in you and wants your advice, don't take that lightly.

NAS75769 said:

If we're all pottering, she's all at sea.  Completely and utterly lost and very anxious.  We try so very hard to suggest ideas, but she will invariably reject them, or interpret them as criticism. Every single one of them.

She needs a hobby. Something she can take to extremes. Something that doesn't have to be rationed. Autistic people tend to be all or nothing people. Moderation doesn't come naturally. An OK activity probably won't cut it. She needs something she finds hugely engrossing that she can do pretty much anytime she finds herself board.

NAS75769 said:

We haven't (yet) told her about the diagnosis, but I am wondering whether this discussion needs to be brought forward.

Probably but not without discussing it with her sister first.

NAS75769 said:

We try and plan weekends, but we are an ordinary family with lots of jobs that need doing.  We don't have any family locally, but we try and chat with them on webchat when we can.  Again, how can we extricate ourselves from this toxicity?

What about friends. It may be hard to accept but a lot of the things your daughter needs right now are found outside of family. She needs a life outside of your family as well and visiting friends or going on trips with groups is not a bad thing for her to be doing on weekends. Think youth clubs, organised trips / activities etc. But they have to be things she enjoys in order to motivate her to confront the anxiety she'll likely feel about interacting with new people.

NAS75769 said:

Back at the start of this year, we gently made her aware of a diagnosis through reading a book together, but despite our best efforts she still feels a lot of shame and has a severe lack of self-esteem.  The above two Catch 22s are only making this situation worse, and we really need help in pulling her out of this. She gets herself completely stuck, and it's like she can't get herself out of her hamster wheel thought patterns.  We so want to help her, but we just don't know how. 

It seems to me, if I had to guess, she's only just starting to comprehend how different she is from everybody else. The antidote to the anxiety and lack of self esteem this causes is of course to show her that different doesn't have to be bad. But this requires more than words or affection. It requires demonstration. She must find the places in which she can excel, take risks with out constant humiliation and succeed in her efforts.

The ability to navigate human emotions with elegance and maturity is difficult for any adult, parent, let alone someone who's experiencing the world as unjust, feeling misrepresented and continually misunderstood, who most likely cannot identify emotions, classify and then understand how to contain them. Perhaps it's just a word, but I might reserve "toxic" for criminal behaviour. Gaslighters or intentional abuse. Not my child. Maybe mine... but for autistics pragmatics matter because we might not ever have the brain wiring to read between the lines which means we cannot be loose with language, unfortunately. 

Autistic Individuals, by default, tend to have hyper-sensory awareness and hyper-sensory feelings. Emotions, are also sensory experience like the receptors we have to sense light or sound, smells, or feel a wound on our skin. The formula is this: Perceptions + Understanding = Summary X, which produce Emotions. That understanding always involves a "relationship with". So young children will feel a sense of injustice and maybe even worthlessness from a lack of protection when someone takes a ball from them. Or takes food off their plate without asking. Something has been stolen from them OR they were worth stealing from. But they've yet to learn how some humans are not worth crying over and that a ball is just a ball. At that age, that element has far more value, so they'll be in tears as if someone nikked a priceless tiara and they'll never be able to afford another.   

As a parent, it's so much easier to stay calm around a 5 year old who is in a puddle of tears over something that - isn't trivial to them (nor should it be trivialised), but you know it'll be OK. We can allow their mess for a minute and it doesn't change our emotional state in the least. We can fix that.

Negotiations with older children, or even with immature and uneducated adults, who have pieces of the information creating a sense of unfairness or hopelessness or despair, this is different. It becomes entirely frustrating. The first problem is one's experience is very real. How do I affirm your experience and also help you gain perspective in order to change the outcome of the summary you've made and hopefully change your emotions? How can I help you assess what you really are feeling, and help you feel safe working out what's internally happening with me.

Trust is established in several ways. One is when I attempt to speak in the way you communicate so you'll want to listen and it will make sense. No one likes misunderstanding unless it's in a play and humorous. Another is by attempting to understand and help identify what you're going through. But basic trust is established by patterns, by being dependable, by helping to create agency, by being involved. In a situation like this one needs resilience and patience, which is much easier when we can for see the outcome. 

The first problem is understanding that her world is so confusing. She needs Science and Art. She needs projects and vision and the elemental ground-up comprehension to build these so she is focused on something productive at weekends. If you don't know what she's interested in, try lessons in anything and everything. Maybe a DIY electronics club or music or something to become skilled at. 

The second problem is simple. Regardless of what she's expressing or complaining or negotiating or "ruminating", I would only respond with "How can I help". Simple. She may not know. You may have an answer, but she may be looking for something entirely different. Autistic individuals can have the capacity to work out the very Systems in Play. Not just a surface exchange. We don't need to know that one's eyes are blue because it's genetic. We need to know how the biology and DNA turned that information on and how it impacts the rest of the body and if there is a sequence to generations. Rumination is across the board a sign that we have the capacity to work out a system in play and the desire. We lack knowledge, wisdom, maturity, the science behind the matter. It is not actually rumination. Rather it is an extension of monotropism, of a natural hyper-vigilance of a drive to become an expert in a field. 

The more everyone understands the capacity of who she can become, how she processes, experiences and perceives reality, it will possibly make it easier for everyone. She doesn't know why there's this attachment and why it's too powerful for her to command. I'm making a WILD guess and asking if there's a possibility she can sense her - most likely nuro-typical sister, is easier for you to identify/relate with and the only way she can handle the knowledge that she may never feel the same bond, is by trying to 'control' that chaos and heartbreak by negotiating a personal connexion alone. As a mother, I went through times where my son was acting like his father, it felt disconnected and I just had to continually tell him he was worthwhile. Do small things to make him feel worthwhile. Things changed over time, and now he's so much more like me (or I'm like him - he's taught me so much!!)

One thing that will help is perhaps not just an Emotions Wheel, but learning to dissect those emotions and where they're coming from, I can't stress how important this is. I hope some of this helps. 

My younger daughter, who is autistic, had attachment issues with her mother, but when circumstances - at around 2 years of age - meant that she was with me and her older sister on many evenings, while her mother worked, these became much less. She was unhappy to begin with, but soon found that I was quite fun to be with. 

For circular arguments, I would assert control. Always answer questions and give advice, but once you have made your views known, be firm that the subject is now closed and move on the other things. 

Both my daughters became avid readers at a young age, reading fiction opens up new worlds for children. They have never been bored if a book was available, when there was nothing else going on activity-wise.

Have you given your daughter any examples of highly successful autistic people. This would probably help with her self-esteem. People like Elon Musk, Anthony Hopkins and Daryl Hannah are all diagnosed autistics, and such luminaries as: Albert Einstein, Isaac Newton, Michelangelo,Picasso, Mozart and Charles Darwin, all showed autistic traits.