Catch 22s

My 11-year daughter was diagnosed with ASD at the start of this year.  This came after many years of struggle and of being either rejected and/or misdiagnosed by professionals.  

I am looking for advice regarding two specific 'Catch 22s' that we have been battling with for some time as a family.  I'm sorry if this is a long post - disregard if you please, but I really need to get this off of my chest.  We've had no support since the diagnosis, there doesn't seem to be any bespoke helplines out there, and it's eating me up:

Firstly, attachment.  For many years, she struggled with separation anxiety.  This was mostly prevalent with me, but happened with her dad too.  It sometimes took two members of staff at the school to separate her from me.  It finally eased at around Year 5 of Juniors.  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) - but she still craves and demands my undivided time and attention when we're together.  She loves her dad, but is very, very focused on me and spending time with me.  She likes to know what I'm doing and when, and becomes very distressed if I'm ever ill and in bed.  The only exception to this is when she is watching the telly, which is very much a go-to for her - either to wind down, or as a default when she doesn't know what to do with herself.  She has a younger sister aged 8 and can be exceptionally jealous at times, despite us repeatedly reassuring her that we are being fair.  It's like Big Brother watching me.  If anything, I have more 1:1 time with her than with her sister.  However, she will invariably pick me as her 'sounding board' and lament.  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.  She will do nothing of the sort with her dad.  So for me, it's a complete Catch 22, and it seems brutally unfair.  I either brush it off and show complete apathy - which goes completely against my maternal instinct - or listen, be present and supportive, show her that I have her back, and then pay a hefty price.   What am I supposed to do here?

Secondly, structure. From a very, very early age, she has not known what to do with herself when there is downtime.  Her default is to watch telly, but I don't allow more than about an hour as I don't think it's healthy.  She will generally watch really nice programmes - Blue Peter, Strictly, Love your Garden, but takes comfort in watching and then rewatching, sometimes many times.  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 loses her temper, then either I, or her Dad, or both of us lose our temper with her as she's so rude, and the weekends are more often than not a write-off these days.  Most upsettingly though, her sister is starting to really feel it.  When it happens, everything else has to disappear as the situation demands all of our focus and energy.  She's done nothing wrong here, but she hates it and is completely bewildered by it all.  We haven't (yet) told her about the diagnosis, but I am wondering whether this discussion needs to be brought forward.  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?

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.  

I'd be so grateful for any insights, thoughts, advice.  I'm trying so very hard to help her, but the more I try, the worse it's getting, and now as a family we are all struggling in very different ways.  

Thanks so much for reading x

Parents
  • 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. 

Reply
  • 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. 

Children
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