I need help and guidance!

Hi all. I am struggling to decide or know what to do for my 15yr old daughter. She isn’t diagnosed autistic and I hope I don’t offend anyone by sounding like I’m looking for an online diagnosis.


Basically, she’s struggled with bullying through secondary school which has ended with us removing her for home education in Dec 2020 (I have two other children who are home ed). She struggles massively with anxiety, it was a problem at school which made sense with the bullying. But over a year later the anxiety is still affecting her quite a lot. She tried to go to college to do core GCSEs last Sept but only lasted two days. And I struggle big time trying to get her to be productive at home.

She has struggled with sleep for a long time. She doesn’t have many friends at all, has struggled with friendships (but her friends have acted like complete idiots so I see the fault is with them rather than her). There was never anything obvious to seek a diagnosis, but she’s always had “oddities”. Some sensory issues with clothes at primary school. Dislikes physical contact. Has always said she doesn’t fit in. As she’s gotten older I am worried about her, she doesn’t seem to want to grow up. I don’t blame her, but most teenagers want independence, to go out, more serious relationships etc whereas she is so childlike in some ways. She doesn’t like people and prefers to isolate in her room. At school she would feel suddenly exhausted, lights would make her feel sick, she would stop talking to her friends until she felt better. She used to say these were panic attacks, but they didn’t sound like typical panic attacks.

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. She hates to touch the dishwasher, cloth or bin and washes her hands a lot. If she spills something she calls for me to sort it out rather than do it herself.

Another thing I have found frustrating is her silence when something is wrong but she won’t speak. This happened yesterday, nothing obvious had happened but she went to her room and wouldn’t talk to anyone except to quietly say go away to her sisters when they asked what was wrong. She completely ignored me. Eventually she barricaded herself in the bathroom. She’s done this in her room quite a few times, she’ll sit in front of her door so I can’t open it and won’t speak to me. As long as I know she’s safe I will just leave her alone and eventually she’ll appear as if nothing’s happened.

These behaviours are frustrating for me, sometimes I feel like I’m still looking after a small child not a nearly 16 year old. I swing from feeling that it’s my fault, that I’ve encouraged this helplessness by caving and doing things for her, to feeling like it’s just not normal behaviour and I’m failing her by not getting some help or advice. I’ve been to the GP, referred to CAHMS but sent back, pointed to a mental health charity and told to refer to the school nurse service, who never replied to me, or just told to go back to the GP. My own mental health problems mean I am struggling to cope with everything to do with this, and I end up completely indecisive and disorganised and very stressed and am letting my daughter down in the process. My boss was the one who said I should look at getting her assessed, but without anything obvious to go on I am dithering.

 Can anyone here help me to decide whether I need to pursue an asd assessment, if anything I’ve said above would be pertinent? Sorry it’s such a long post!

Parents
  • 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!

Reply
  • 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!

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